raising redheads

mid week randoms.

2012-02-08T08:56:00.001-06:00

Before I start this post, officially, I would just like to say that the following photos are probably my new favorite group!

We have a new girl in our house. A little girl with a binky! And a side pony. And she is dressed (not in jammies.) This is a whole new lady...

I believe we are on the mend. Mabel is still a little 'off' but she is definitely starting to feel familiar to me again. After sickness, the kids always have an odd feel to them. With the redheads, I could always tell when they were coming out of it and were going to be 'normal' again. Mabel's 'normal' is touch and go so it's a little more difficult to judge. She did get two of her back top teeth through so we are thankful that is over!

Yesterday I mentioned that therapy is becoming quite difficult for our girl. It can be discouraging to see her get so frustrated especially when there isn't a great deal of progress being made. Well, maybe that's the wrong way to put it. She's getting a little stronger, for sure, but ultimately we aren't seeing huge gains. We are praying and possibly thinking of taking a break or at least cutting back on one therapy a week.

It's a difficult decision for me and it weighs heavily. I have heard of parents whose children have a diagnosis that limits their mobility, strength and endurance who decline therapy each week because ultimately it is more upsetting than beneficial. That makes sense. If Mabel had a disease that we knew would stop her from walking, I wouldn't push for her to do so. It becomes overwhelming and discouraging.

However, we don't have a diagnosis like that--or of any kind--so we want to give her the best chance to do great things. It can be at a high expense for us, emotionally, but if it pays off in the long run it will be worth it.

I am so blessed by the people in our lives and the wisdom they share with us. They love our girl and work with her week after week with such grace and patience. They come into our home and brighten our day and ultimately, our lives. I am so thankful that God has allowed me to share in this journey with the people that were so delicately placed in our path. It's extremely humbling.

They sure love our girl! This is Beth, Mabel's occupational therapist. She wears red most weeks so that Mabel can see her better. She sweeps our girl up and snuggles her for as long as she needs to in order to calm her. She sneaks snuggles and smiles. She never forces Mabel to do anything and is so calm and gentle. She is a breath of fresh air for Mabel. I watch her rejoice in our triumphs and often times, join in our grief when it rolls in the door. She has seen great days and experienced really bad ones. She knows our little lady inside and out and has truly become a key part of our care team for Mabel.

Speaking of Mabel...

she is delightful.

This morning I visited one of my favorite blogs. It's written by a mother of 7 children. 4 are her biological children and she has adopted 3 (one baby and 2 older children!) from Africa. I adore reading about her life in tid bits and watching her children grow.

But this morning as I opened the page, I felt something a little different and always unexpected. She is expecting baby #8. It is amazing and wonderful!

Yet my first thought was, "sigh. she has all healthy children...of course she can go on to have more..."

I hate thinking this way and feeling such strong feelings of jealousy and sadness. It's a mixture that stings and fries me to my bones. Immediately I dismissed my own feelings to congratulate her family because truly it is a wonderful blessing. It's just one that we will not experience again and that is just one more thing I have had to take time to grieve...

Daniel and I fought yesterday. It happens often but it reminds me how truly isolating being a mother can feel...especially to a high needs/special needs/medically complex child.

My mind is prepared for the worst.

His mind is stuck in the very superficial present.

We aren't quite sure how to mend the two.

Deeply considering seeing a therapist to sort through some of it [&& I'm thankful he's more than willing to do that.]

We love one another incredibly but this is a road we have never traveled. We are bound to get it wrong somehow every day but we know it's worth working at--for all of our children and each other.

We head to Chicago tomorrow for some follow up appointments. Mabel's eyes will be re-checked and alot of questions will be asked. I hope that after tomorrow we will have a better understanding of her vision.

Her g-tube button will also be replaced which I'm not looking forward to. After this appointment, we will be changing it at home every 3 months. Can you say yuck?

Did I mention she's taking a binky?

I mean honestly...how cute is this?

Her suck is finally strong enough to keep it in, which is a huge milestone in our opinion. Plus, she has teeth to bite it so she does cheat a little but who cares, right?

It's Feeding Tube Awareness Week this week. I have been posting a status and photo on facebook each day, hoping to educate people a little more. Maybe take away the fear and the anxiety around the tube itself and show that it really is super normal to us. It's been such a huge help for our family!

Did I mention she has a binky? Ah yes. I believe I did.

Ok, enough randomness today. There's a sweet girl crying from the toy room and a young boy lifting his daddy's weights in the living room. I'm afraid one is going to get hurt and one is about to vomit. You know, pretty average for 8:30 am on a Wednesday.

I'll leave you with this:

You're welcome.

How is Homeschooling Going?

2012-02-07T14:04:00.000-06:00

Homeschooling is coming right along. Our days are less planned out and coordinated than I originally planned but I am ok with that and so is Nora. She is learning so much!

We are praying and talking about some options for schooling in the fall-for Nora's 1st grade year. It's a possibility that she may go to the Christian Academy. It's a possibility that she may stay home again. At this point, she has expressed a desire to go to school and Uncle Jake goes to our private school so this would be a good option for us. We will continue to pray and keep it an open conversation, depending on the Lord's leading to guide our way.

Of course it is never what I had envisioned-sending my children to school. wanted desperately to keep them home and teach them myself. However, it was never my plan to have a sick baby either. My plans are nothing and His are already aligned. We are trusting in His will no matter what that means and I am finally ok with that.

In the meantime, we are working hard on math and still reading like a champ. Braden is still learning his letters but most of his learning is in the every day things and less on paper.

I am loving teaching them and they are incredibly smart and gifted.

God has enormous plans for our little redheads [and their little sister, Mabel too!]

I just pray that they be open to His plans and learn very early to let go of their own.

It would have saved me so much grief if I could have submitted to this idea much sooner in my own life.

------

Mabel's GI appointment went well yesterday. We are starting her on some meds for her reflux and hoping that this will help eliminate some of her puking. We will also be having a 'gastric emptying study' done on her to see how quickly or slowly her stomach empties. Otherwise, things are good.

Except therapy. Therapy isn't going great. She's resisting everyone except me.

It's sad and upsetting.

Thanks for praying...

Happy Tuesday.

treat. yourself.

2012-02-06T10:10:00.000-06:00

If ever you want to treat yourself, plan a Valentine's Day Open House and invite all of your friends to come. Indulge yourself with chocolate, cheesecake, cookies and truffles that make you high inside. Add to it a table full of candles and scents that send signals to your brain that all is right in the world and another table full of bags that can be embroidered for any purpose under the sun.

It is then that you will feel love and warm and butterflies.

It is then that, for a moment, all really will be right in the world.

That's what my weekend consisted of. A house decorated with reds and pinks and friends who walked through the door wearing the same. They just kept coming and so did the treats. We laughed and sat and ate for hours. Getting ready for the day took me back to a familiar place. A place of home making and party throwing. It felt normal. I love throwing a party of any kind but this one was especially enjoyable. The house was warm with company and there was a perfect ambiance of lighting due to a number of candles in large hurricanes being lit. No one else probably noticed those details but it was in them that I felt most proud because it was cozy and soft.

At the end of the party, everyone gathered in the living room. We were entertained with crazy big kids and passed a fussy Mabel around to comfort as well.

If you know me at all, you know that this moment of me smelling toes is so typical it's almost not even worth posting...

The kids were gone to Nanny's for most of the party but were thrilled to come home and be able to eat our snacks. Brother didn't know mama was watching...and then he caught my eye.

Ash set up her Thirty-One products and Rache set up her bows and Scentsy.

Those parties are both still open if you are wanting to place an order. Email me and we can set ya up!

This year I've been really proud of the ways that I've learned to treat myself. It's been in the little things, of course, but it has come to mean so much to me.

A magazine and a long bath.

A Dr. Pepper mid morning.

A big cup of coffee late at night.

A new nail polish color.

And most recently, salty && sweet delight!

These cupcakes were a massive pain to make. They looked darling and no one ate them. Thanks guys.

Thanks to Rachelle for brightening my ~~day~~ week with a spring-like bouquet that makes me smile just thinking about them.

What else makes me smile?

A little girl who is feeling better and can smile back.

A brother who carries on family traditions...

Morning bites of sweet potatoes.

And having daddy on vacation for an entire week starting today!

What makes me less happy?

A trip to our GI specialist today.

A one day trip to Chicago on Thursday for a repeat eye exam and a g-tube button change.

With the busy week ahead, I think I'll slumber back in my mind to this weekend and all the fun I had preparing, visiting and reflecting. I cannot wait to do it all again.

It was a true treat to myself and hopefully to all who came.

still breathing.

2012-02-04T09:21:00.000-06:00

I'm still here. I'm still alive.

We're making it. It's going to be ok.

These are all things I have had to tell myself daily for the past 3 weeks.

I'm still breathing. It's not so bad.

It's going to pass. You're going to be alright.

And I am....

still here. deeply blessed. extremely tired, but making it.

And so is Mabel.

Alot of crying. Alot of sadness and frustration. Alot of pain (literally).

But we're doing ok and we will survive.

------------------------

Today is our Valentine's Open House.

It's from 3-6 pm at my house.

If you'd like to come, please do! It's open to anyone.

We will have a dessert buffet.

And Scentsy, Thirty-One Bags, and Harper's Halos to choose from.

It's a day to pamper yourself and relax with friends.

If you can't make it but would like to order something from one of the above vendors, please contact me either by facebook message or email (rameelin @ hotmail dot com.)

They would love to have your order as well!

Hope to see you here.

I'll be back with photos tomorrow or Monday.

Busy week ahead of me. Appreciate your prayers as always.

Photos from the Phone [Friday.]

2012-02-03T10:23:00.000-06:00

Cinnamon Roll Morning.

Sweet potatoes for my sweetie pie.

Special Delivery for someone I love! Can you guess who?

Starbucks && bangs.

Toast for lunch.

Teething babe.

First time she has seen us in the mirror! [a big moment!]

Steak N Shake!

What a week! What did you do?

pain.

2012-02-02T08:31:00.001-06:00

It's been a really bad couple of weeks.

Most moments have been spent carrying a floppy Mabel over my shoulder and praying under my breath that the Lord would quickly help this pass.

What is 'normal' baby stuff, like teething, seems so enhanced with our girl.

Think about it--a 'typical' 18 month old who is teething is usually up and active; busily entertaining themselves and therefore easily distracted from the constant pain and distress of the huge teeth busting through their gums...

But not Mabel.

She is weak and tired; exhausted from simply being awake. Not being held means a trembling body and usually increased seizures. Holding her tightly means an achy back for mommy but a quiet home.

Sweet moments with Mabel; less time for the redheads.

Thus the constant pull I feel between special needs and the practical needs of my older children.

That alone can be agonizing for me. The guilt weighs heavily.

Mabel is extremely 'chokey,' as I like to call it. She can't take a drink without choking and ultimately throwing up but she is throwing up her tube feeds almost immediately as well. We meet with her GI doctor on Monday but honestly, it couldn't come fast enough.

Initially we saw huge improvements with her g-tube. Now, we feel like we've taken 10 steps back.

The sound of her choking from her crib is haunting. I lay in bed and worry about things that no mother should have to. Is she aspirating? Will I know if she is? Will she get pneumonia because she isn't strong enough to fight it...

...and on and on and on.

The last few weeks have proven to me how deeply I have grown emotionally and especially spiritually. It has taken a good year to bring me here but I am stronger. I am more equipped. I am less afraid and more proactive. I am depending on the Lord and not on myself. I have truly released my ideas of control to Jesus and have allowed His peace to rush over me in situations that use to take me under.

Everyday I am learning more about Mabel and how to take care of her. I am learning more how to take care of me and allow the Lord to saturate this home with His goodness and mercy.

As I stood rocking Mabel in my arms in the dark a few nights ago, I prayed quietly in her room and I felt the Lord meet me there. He always meets us where we are, but sometimes where we are is not welcoming visitors.

For the first time ever, I am truly open.

For the first time ever, His Word rings true to my spirit.

I have read it my whole life and yet it is now that I understand it.

Did you know it took me almost an entire year of not opening my Bible before I felt like I could again? I'm not ashamed of that. It's not as if I didn't read the Word because I have; almost every day. I have taught the children and counseled others and depended on verses to pull me through each day.

But MY Bible; my favorite, personal copy of the Word was closed for a very long time. And in that, I truly formed a living, breathing, conversational, intimate, and personal relationship with Jesus.

I cannot speak for others, but as much as I thought I knew our God before--I know Him so fully, and wholly now that it can't even compare. And I feel sad for my former self.

You know, the self I have grieved for so long?

This new self has grown into someone who has something so much greater than my old self ever had.

And when I opened MY Bible last night in a dark, quiet parking lot-I felt the Lord softly settle into my spirit and meet me there. I am in this dance with Him that is close and protected. It feels very delicate and gentle. Before this journey with Mabel my relationship with Jesus was completely opposite. In fact it was bold, loud, reckless and unashamed.

Now it is more careful, more sacred, more quiet.

Now when the dark rolls into my home and the nights seem unending, I truly feel the Lord near and I know He's here with me. I truly know that He's the only one who cares more for Mabel than I do and He knows each moment before it happens. He is prepared in great amounts to care for this child while I am sleeping or weary. He is in control and although I don't understand all that feels helpless and terrifying, I can lean on Jesus to bring peace.

Peace. Peace. Peace.

I would never want anyone to go through the things we have gone through this year. But I know that my faith has been simplified and enhanced through a situation that has been heartbreaking and draining. I know that it is the exact thing that I truly needed in order to experience all that I have been speaking about to others for so many years. But what I was saying was somewhat empty compared to the fullness of this Love with Jesus that I have now.

I didn't know that it was empty. It felt real and alive and perfect for that time. But now, in this time, I am humbled to know the Lord in the way that I do and I can only hope that all of you get to experience it in such a vibrant way at some point in your journey as well.

And maybe you have. I would love to hear about how your life changed and your love affair with God was re-defined.

Hoping for better days ahead.

Hoping for new teeth and less pain.

More sunshine and less rain.

But in the meantime, my hope is truly not in those things at all but in the One who holds my future in His hands.

I am weary but I can rest in God alone.

2012-02-01T09:20:00.000-06:00

It has been an 'essentially normal' morning in our house today.

If by normal you mean having the boy wake me up at 6 am saying he's sick. He carries on for 10 minutes freaking out and then falls back to sleep with the garbage can next to the bed. All the while, I believe he was sleep talking and walking. As soon as I get him back to sleep, my mind starts racing and I realize I can't breathe out of my nose. At all.

So I get up.

And then Mabel wakes up.

She continues our normal morning by crying. Choking. Puking. Choking some more.

And then I give her a bath.

I dye my hair [yes, again. 3rd time this week.]

I give myself a bath.

She continues to cry.

All of this by 7:30 am.

It's currently 9:10 and the redheads still aren't awake. I'm so jealous.

Mabel's still screaming.

Good thing yesterday was a close-to-perfect day around here.

It was 60 degrees outside and we took advantage of it!

Mabel and I had a WIC appointment, which is always interesting.

I won't go into it.

But when we came home a special gift was waiting. Special thanks to Pawpy and Eileen for buying our girl this new seat. I always wanted one but knew she couldn't sit in it.

Now she can!

For the last 3 weeks, Tuesday has been pizza night with the girls. Rache, Katie and sometimes Jeni have been coming over in the evenings and we eat, talk, eat and talk.

I have really started to look forward to our time together each week.

Last night as Rache was leaving I hollered '...night; love you.' as I carried Mabel up the stairs for bed. Harper yells back, "I love you Mabel."

Shout out to my bestie and shout out to hers.

Presh.

Crazy is made on days like today.

Welcome, crazy. I embrace thee.

What choice do I have, right?

stuck.

2012-01-31T09:09:00.000-06:00

I'm feeling stuck.

My nose is clogged. The baby is crying. The redheads are grouchy.

There is nothing more to write about today. It's 9 am and I've already been awake for far too long.

All I'm hoping for is a hot bath, a Dr. Pepper, a break from baby cries and maybe some time outside.

[it's supposed to be 60 degrees today!]

I'm feeling stuck today and there's not much more to say.

i care about rare.

2012-01-30T10:26:00.002-06:00

It was such a good weekend to take a break from writing and to just "be."

Be in the midst...

of the mess. the pain. the joy.

Almost monthly I go internal for a good check up of my soul.

Friday night Rache and I went to a women's retreat at a local church for a little refreshing.

It was so well needed. A good cry brings a good breath. One that is deep and runs through your lungs like the chilled air on a cold run. You can feel it burning and it makes you want to stop yet it is equally invigorating and energizing. It's just enough to push you forward to the end of your race and you feel replenished as soon as you are done.

That's what a good cry did for me this weekend. It pushed me forward.

I returned home to a sick, teething, crying Mabel. She spent 2 out of the 3 days this weekend in hysteria; crying and fussing around. I slept with her jerking, seizing body on top of mine Friday morning and felt the reality and severity of her little life rush through my body like a drug. It's incredibly scary to let my mind escape me and meet up with harsh truth of Mabel's little life and what it might mean for our future.

She always wants me but this weekend, mostly she was perched on the shoulder of whoever would carry her.

Very little sleep was had by all.

I was told by my boy that I was 'his one and only girl.'

I was also told this morning as he rounded the corner at the bottom of the stairs,

"Mommy. You have crazy hair.......

but it looks beautiful."

I hugged him and greeted him with a good morning, buddy. Just as I do every day. That is one thing about my life and myself that I will never regret. No matter how bad the night before may have been, my children are greeted joyfully each morning and that is a really good feeling. I may fail a million times throughout the day but I am determined to daily remind them how thankful I am to wake up and greet them.

They are all I've ever wanted.

Daniel was home for more days than usual over the weekend. I am so thankful for his help. Although I typically have to tell him how to help me, he is pretty quick to do so.

I was supposed to be a part of a Rare Disease blog hop today as part of the group that I support when we 'Wear that we Care' for World Rare Disease Day. 30 days from today (February 29th) we want more people than ever to be aware of how significant rare disease is in our generation.

Spreading awareness is incredibly important to me. In fact, it's become my mission to stop the ignorance and raise the bar on the information that people are receiving or not receiving about rare disease.

However, I just didn't have it in me to sit down and write a whole post about it today. I did that last week.

The statistics are clear. There isn't enough research. There isn't enough funding. There's very little advocating happening.

There's only people who are suffering and the people who love them doing this dance between joy and grief; good days and bad.

Children are dying (almost 30% of children with a rare disease will die by age 5!)

Also, 1 in 10 Americans suffers with some form of a rare disease. That is over 30 million people which means that is more than the total number of people living with cancer worldwide.

And yet we're still here--talking about 'rare disease' and how we need to raise awareness.

It infuriates my mommy heart and breaks it all at once. It feels so very unfair.

But here's what I do know--I have a great hope that research will progress. I have a great hope that with the help of people like you, we will raise awareness and funds that will throw our nation into a more educated state. One where there will be an increased urgency to see the faces of children who cannot help themselves, and therefore step up on their behalf. Sadly, there is little time for most of these children.

We are without a diagnosis, but many of our friends are living with the reality that their children will die at a very young age due to a disease that is considered rare yet quite frankly might be easy to research or even cure if the support and funding were available.

Don't they all deserve a fighting chance?

Please visit and 'like' the Global Genes Project's Facebook Page to get involved.

Mabel and I are good friends with the people there and we would appreciate your support!

Remember to "Wear that you Care," by wearing jeans to support World Rare Disease Day. Take photos and tag the Global Genes Project when you upload them

Have a knack for creating?

Donate a bracelet to the 7000 Bracelets for Hope campaign. You can bring hope to a child or family who is living with a rare disease. Mabel and I received our bracelets last summer!

For more information, please visit www.GlobalGenes.org and www.RareProject.org to learn more.

I'm all about justice. And this feels very unjust. There is too much 'rare' for my liking. Please join our fight and help us spread awareness...

For Mabel.

For Ethan.

For Stevie.

For Olivia.

For all the man children who don't have a voice but have a life worth living.

We can make a difference!

Photos from the Phone [Friday.]

2012-01-27T10:22:00.000-06:00

Happy Weekend, Friends.

[all of me]

2012-01-26T09:26:00.000-06:00

Click here ----> All of me by Matt Hammitt:

Best song for this journey. Hands down.

****

Afraid to love

Something that could break.

Could I move on

if you were torn away.

And I'm so close

to what I can't control

I can't give you half my heart

and pray He makes you whole.

You're gonna have all of me

Cause you're worth every falling tear.

You're worth facing every fear

You're gonna know all my love

Even if it's not enough

Enough to mend our broken hearts

But giving you all of me

Is where I'll start

I won't let sadness

Steal you from my arms

I won't let pain

Keep you from my heart

I'd trade the fear

Of all that I could lose

For every moment

I'll share with you

You're gonna have all of me

Cause you're worth every falling tear.

You're worth facing every fear

You're gonna know all my love

Even if it's not enough

Enough to mend our broken hearts

But giving you all of me

Is where I'll start

And Heaven brought you to this moment

It's too wonderful to speak

You're worth all of me

So let me recklessly love you

Even if I bleed

You're worth all of me

You're worth all of me.

You're gonna have all of me

Cause you're worth every falling tear.

You're worth facing every fear

You're gonna know all my love

Even if it's not enough

Enough to mend our broken hearts

But giving you all of me

Is where I'll start

Love Poem.

2012-01-25T10:37:00.000-06:00

These are the gifts

that have been given to me.

Tiny in nature

but precious, you see.

They hold the key

to my changing heart.

Building me up

not falling apart.

Their lives are ignited

by greatness and love.

They are like precious stones

sent from above.

Never for granted

I take these days.

I adore each moment

ever passing in haze.

They hold so much wonder,

such simple delight.

Looking with questions

I pray I get right.

I beg God for mercy,

plead for His grace.

Lord, please let me teach them

and show them your ways.

These moments are passing

so quickly, so swift.

I breathe them in deeply;

they are such a gift.

Children with wonder

and smiles so bright

Make my heart heavy

to just get this right.

Raising these children-

whether yours or mine

Is my greatest adventure,

my moment in time.

I pray for each daily,

it is my joy to bear.

I want to grow wisely,

each child with care.

Look at their eyes,

be patient and know.

They are growing in goodness

some fast; some slow.

But each with a purpose

and each with a plan

Each will know Jesus

I know that will stand.

Beside them each day

and praying all night.

It is by His mercy

and not by my might.

They will remember

and thank me someday.

For loving them fiercely

and guiding their way.

The many faces of Nora Elaine.

2012-01-24T22:26:00.001-06:00

I have really watched my girl blossom this year. She has many different faces for all of her little thoughts and emotions and is quite animated. Let me share with you some of her many faces from this year...

Happy. [hugging herself.]

Surprised!

Her "mad at bubby" face

Embarrassed.

"A little bit shy."

"A lot Shy"

"Shocked."

Smiley face.

"Fighting with Bubby."

"Fighting with Uncle Jake..."

"Smells Harper dirty diaper..."

When she gets in trouble...

Shocked. (again)

"Thinking hard in school..."

"When I'm surpised at my birthday party."

"Fighting with bubby.." (please note the layering of clothes!)

Tired.

"Thinking hard in school..."

"Mad."

Surprised.

Being a model...

Nora, we just want to tell you how much you bless our lives and this home. You bring me so much laughter and joy. You are funny, smart and absolutely beautiful.

Someday I know that you'll thank me for these photos of you in your dirty tights and house slippers.

You are my sunshine girl.

2012-01-23T12:54:00.001-06:00

An estimated 350 million people worldwide suffer from one of the 7,000 different types of Rare Disease.

Do you think that it doesn't affect you? You're wrong.

Even if it doesn't directly affect you, if you're reading here you can no longer say that it doesn't affect you. You know Mabel. You probably know others. It affects everyone because we all have genes.

Every one of us.

We each have mutations to those genes.

Every one of us.

Are you a mom who is planning to have more children? Is that a possibility?

If so, take a long look at your husband and yourself and know that within you both are genes and mutations that could possibly create a child with a rare disease or syndrome.

Discouraging? Upsetting? Frightening?

Maybe so. But true.

Oh so very true.

Please don't let the thought change your mind. Have children!

And embrace them fully; whether healthy or unhealthy. Sick or well.

But please go into it being educated. There's no longer an excuse.

Kelle Hampton said once in a video from her blog that we need to help create a world where children who are different are celebrated and not just tolerated. It's true, don't you think?

What a beautiful world that would be.

Did you know that many moms who had the option of knowing Mabel's symptoms prior to birth would have aborted her before she had the chance of breath? Can you imagine?

I love the idea of a world where all little children know what a G-tube is and embrace it. They are not only ok with it but ask where there's is. I would love a world where people didn't stare and wonder when a child's body is moving frantically about because they lack the control to hold it still and steady. I would love a world where parents felt empowered to educate others about special needs and others would feel the urgency to act on their behalf; realizing that they too could be affected at some point.

Because 'special needs' or 'sick children' are not just given to special parents or parents that can handle it. God didn't just hand pick a few select people to fill the roll. It's really more like rolling the dice. It's a gamble. Anyone could be where I am. Anyone.

And that means you.

Rare disease affects everyone. And therefore, everyone should feel the need to act.

We should all want to stand up on behalf of those that are affected because we never know when and if disease will strike. Much like death, I believe disease is no respecter of persons. Age, race, gender.

Whether born within or grown into--disease strikes quickly and unexpectedly. There is no true way to escape it or even prepare for it but I believe we can educate ourselves about it and be involved in changing our society into one that is more accepting, more knowledgeable and more compassionate.

These children who suffer are sisters, friends, daughters, sons, uncles, brothers, nephews, neighbors. They are sitting in the back of your church or are absent from service because it's flu season. They are loved deeply by their families and are worth your prayers, time, money and effort.

For now I hope you are reading this while your 'healthy' children are running quickly through your house, not listening and being a bother. I pray that you recognize the gift you have been given in them.

I do.

But only now--only after I've had to look at my own 'unhealthy' child in the face and fight away fear and anxieties that I didn't know existed.

I'm begging you--please don't wait until you're affected by rare disease to stand up and appreciate what you do have and fight for what you do not.

You can help us fight for Mabel and a diagnosis!

By spreading the word about rare disease and helping us raise awareness, we are gathering warriors who are willing to fight with us in a battle that is long and exhausting.

I can assure you that we would [will] do the same for you, if you needed [ever need] us to.

You have my word.

For now, we are preparing for World Rare Disease Day at the end of Feb.

If you work in a place that would allow you to wear jeans for a cause for one day, please consider rare disease to be that cause. Everyone can pay a dollar or a donation and the money could help go to a number of different organizations that are in this fight as well.

"Jeans for Genes"

If this is something you'd like to do, please email me [rameelin @ hotmail dot com] and I'll get you ribbons to hand out on the day along with more information.

"Mabel's Able" is now officially a not-for-profit organization and we are thrilled. I'm in the process of getting a paypal set up so that we can accept donations at any time. Please help us spread the word because money raised means more children who have the hope of a diagnosis, better therapies, monetary needs being met for families, etc. These are huge things that are so close to our hearts.

Rare Disease isn't as rare as we would like to think. For now, you may consider yourself blessed to not be touched by the devastation, hurt and crisis that comes with the territory. I pray that you never have to experience it. But if you do, there is hope.

There are people who will stand up with you. People who will care enough to include your child and rally with you for a cause that actually means something.

For us, it means everything.

Please share our facebook page, "Raising Redheads" on your wall and encourage people to visit this blog. Please ask them to invite Mabel into their lives so that they will get involved too.

Our little girl not only deserves life, but she deserves a diagnosis.

She deserves for people to rise up on her behalf and fight.

Won't you join me?

[[if you or someone you love is affected by rare disease, please write me. I would love to hear your story and feature it here in the month of February.]

2012-01-22T10:08:00.000-06:00

I sing to Mabel every night.

"Dance, Dance wherever you may be. I am the Lord of the dance, said He...

I'll lead you all, wherever you may be; I will lead you all in the dance said He."

And I think of her.

It's been 6 years today since the Lord took Nanny to Heaven.

I write about it every year.

Did you know that I adored her?

I did. I can remember laying in her bed as a little girl and asking her to wrap her arms around me (the same way Nora asks me to do now) and she would. She would rub my back for hours. I remember the way she smelled and how her skin felt. I remember her laugh and the funny things she said.

Despite where life took her, she loved deeply. Her heart was huge and giving.

Life wasn't good to Nanny in alot of ways. There were people who were good to her--and I pray I was one of them, but life was hard for her emotionally.

She had many brothers and sisters that were much older than her--all who died early. She buried them all, along with her parents well before I was born. Most of them were addicts of some sort and died terrible, young, unnecessary deaths.

And yet, Nanny loved.

Nanny & Pawpy's only son, my Uncle Bo, died just a few short months before Nanny did. He was an addict too. He died young and tragically. Nanny loved that boy; much like I love Braden, I assume.

[and I'd give anything to hear her say I'll make it.]

I just know in my heart that she couldn't live without him. It was just too much.

I'll never forget the way that Nanny picked her thumbs when she was nervous or the way her nails looked when she grew them long. She wore a pretty opaque color of polish on them and her skin looked like porcelin. Even at her very worst, I loved her greatly.

Even in her deepest despair, she was strong and brave. I watched her hold my Pawpy's hand as Uncle Bo was carried out of his house and I saw the anguish on their faces. In my heart I knew then that she wouldn't live long without her boy.

Some times it doesn't even feel real to write about her not being here.

And I can't believe how hard it is sometimes, even after all these years.

Some of the hardest parts of raising these children has been knowing that she hasn't gotten to be a part of that with me. And it angers me that some who are here--and could be a greater part of their lives--choose not to be.

She would have loved them so much.

Aunt Suni and Uncle Bo were born one year apart--to the day!

They were wild and mischievous and tested her every single day. If I had just one wish, it would be to spend even 5 minutes asking her to re-tell those stories of how she made it through.

I suppose what's most important is that she did make it through those hard years of raising small children and she was a wonderful grandma to us.

I believe she prided herself most in that.

The day that she died 6 years ago was actually quite beautiful.

Mom, Jeni and I went to the hospital to see her. She had been there 2 weeks.

On this particular day we brought a curling iron and we did her hair. Shortly after we left, Pawpy came and spent the afternoon with her. I would like to believe that he reassured her in that moment, whether in his voice or by his love, that it was ok to go on to Heaven.

She rested well and I think we all felt really great knowing that we got such intimate time alone with her.

6 years ago I learned that death is no respecter of age or of persons.

It was a valuable life lesson.

God has an ultimate plan and thankfully eternity is the reward.

Nanny was a mother, grandmother, wife, aunt, and friend.

She knew that I was pregnant with Nora, so she was also a soon to be great grandmother.

Clinging to my memories today and cherishing her for all she was to me.

---------

Happy Anniversary to my parents.

Just look at all you've created--a family who adores you and stands beside you.

♥

house happenings.

2012-01-21T10:34:00.003-06:00

Did you know that my greatest fear in this journey was being told that 'everything looks essentially normal' with Mabel? It was.

Since I got the call from the geneticist saying that everything 'looks essentially normal' I have felt a huge peace. I already faced my greatest fear. It was awful. We know it's not true and we will always pursue finding a diagnosis for our girls symptoms but facing that call was a really big part in moving forward for me.

Obviously there are moments that are incredibly painful in the realization that we are still very much in this with our girl--and that we will always be.
She is seizing more frequently, leaving us 'essentially' back at square one. She is still crying excessively at night. I feel sad in waves like when we are out shopping and I see clothes that I would love to put her in, but know that her body is too awkward for them. It's in weird moments but mostly [finally] I feel better.
There is a peace that only God can give [that He has given.]

Our house feels mighty cozy lately. Painting the kitchen orange was one of the best choices I ever made.

It's like embracing an autumn breeze every time I enter. I mean, seriously.

Mornings aren't usually my favorite time of day. In fact I used to loathe them. However, on winter mornings the sun shines into our yellow living room just right and I feel awake.

I mean, really awake.

Simple craft idea: Buy a Valentines Day gift bag. Cut it to fit a frame (size of your choice.) Keep it plain or look through a magazine for a quote or photo that you love to go on top. Voila!

Speaking of frames: Duh.

Decorating Idea: Frame your child's artwork. It's a masterpiece, right? The creepy, redheaded strong woman on the left--why that's me, of course. The bottom photo is Jesus on the cross and the pigtail girl with two sets of eyes and massive lips on the right--that's Aunt Rachel.

I re-decorated our downstairs bathroom with Daniel's guitar items. I'm not finished yet. I think that some red is in order which means painting sometime soon. You know I like a good color change [this is why my hair is yet again a different shade this week. This is the 3rd time && it's brown.]

(but that's beside the point.)

We watched the movie "Courageous" finally. It was pretty amazing.

It lit a fire in my husband that I haven't seen in quite some time. We all get in funks, don't we? This year has been especially hard for him but I know that he will bounce back and do even more amazing things for God. One other time in his life did he experience something like this and it was when he led Jimmy to Jesus. Jimmy died knowing and serving a living God because Daniel listened to his calling and took the time to speak to him about Heaven. We all have the capability of doing better and you never know who needs you to...

The kids ask me every day what this sign means.

I always tell them:

Love. Love. Love....Greatly!

Nora and I made 'snowflakes' awhile back and they are still on our windows. Another easy craft that you can do with your kids. They look pretty, and are easy.

My main point in posting this picture, however, is to show you the little amount of snow we have accumulated. This has been the calmest winter in a very long time.

Ah, yes. A touch of spring. Just enough to keep my spirits lifted as I'm doing dishes [7 times a day.]

What's making me happy right now?

Vanilla Latte coffee mate.

A nude shade of lipstick that is simple and chic.

Waking up to the smell of burning wood.

Olive Garden bread sticks. omg.

American Idol auditions.

What's making you happy right now?

Rough friday

2012-01-20T13:51:00.000-06:00

It has been a bad morning. A really rough morning.

Screaming baby. Big kids talking nasty to one another [and me] and lots of yelling.

Days like today are hard and long and exhausting.

But I can't help but sit back and laugh. I mean what else is a mom to do when she walks into a room and her baby screams for her loudly every single time. Of course I laugh when my baby who 'can't see me' or who 'doesn't hear well' looks right at me and flails her body around like she's dying because I don't pick her up. I laugh because I sneak around my own house like a ninja in hopes that she doesn't hear me or catch a glimpse of me 10 feet away. It's ridiculous really.

...

But it's all I've wanted for 18 months; for her to recognize me and desire me above anyone else. And finally she does. She really does. Greatly does. Always does.

And I slither through a room hoping to avoid her cries of affection because it can be so draining.

If I'm in another room and she hears me talking, she loses her mind. I mean the most aggressive, ear piercing scream you have ever heard. Sometimes if the big kids talk to me, I ignore them and don't answer for fear that if I speak she will scream psychotically for me. Pathetic, right?

And again, I try desperately how to navigate the world of 'special needs' with high needs.

Mabel, my friends, is officially both. Special Needs && High Needs.

Apparently so is her 4 year old brother who did NOT stay with his Aunt Jeni last night. At around 11 pm, he told her that 'he hated staying at other people's houses all night' and that 'he would wait by the door for someone to come and get him.'

So Daniel did.

And I woke up giving him chocolate milk as always, proving there really is no rest for the weary.

The fire is going. It's bitter cold in this house. The kids are restless and I've cleaned as much as I can. Hoping for some time to relax and just enjoy the day.

And my super heroes. Braden is batman and Nora is, once again, Bumble Bee.

Sigh.

words.

2012-01-19T17:52:00.000-06:00

I left the house today by myself. I needed to get out and enjoy the quiet. Refresh for awhile. It was lovely.

I came home to a quiet house as well. Kids were having rest time in their rooms and 2 hours later, they still are. They've been cuddling alot lately. We caught them snuggling up in our bed late last night and then again this morning on the couch. Precious.

Speaking of cuddling, when I came home today in the mid-afternoon my girl was wanting me. Her eyes cried out, "Let's take a bath and lay skin to skin like I'm a newborn again..."

So that's what we did. And it made my day. [and hers.]

There is something magical about our girl's smile. She has a mouth full of big ol' teeth and her breath, although it smells like citrus, is exceptionally kissable.

I talked to Krystal on the phone today. She's doing well. We spoke about contentment and how beautiful of a place it is to dwell there. I can honestly say that I'm there.

I'm there in my orange kitchen. I'm there with lots of little kids running wildly around me. I'm there singing to my girl in the late of night as I rock her to sleep. I'm there early in the morning when I'm cuddling my boy. I'm there when I'm dancing. When I'm crying. When I'm questioning. When I'm sure or unsure.

I'm in contentment with the Lord and therefore, in every area of my life. It hasn't been easy but today I can say with assurance--I am there.

It's as if the child in me is screaming out, letting my hair stand on end and jumping as high as I can.

I am free. Free. Free.

Free as these children are teaching me to be.

Today was like my perfect Sunday, except it's Thursday.

This boy has never slept anywhere except his own bed with that Bob the Builder blanket. Tonight, however, he is staying all night with his Aunt Jeni because he's 'a big boy.' Indeed he is. Hoping he will really do it...but I'll sure miss his morning cuddles. I will not miss being woke up before the sun rises just to fetch him chocolate milk.

It's taken me a couple hours just to type out this post.

I stopped to cuddle a girl. Chase the big kids.

Clean our bedroom. Do some laundry. Watch a couple minutes of a movie.

Kiss Daniel. Take pictures of a mouse [dont ask].

And now, worship music is playing from our dining room and I feel that contentment seeping in.

Loud, running kids who do not listen is still the most wonderful sight. It's still the greatest sound.

I feel so rich right this very moment.

Happy ~~Sunday,~~ Thursday friends.

----------------------------------

Poll for women of all ages:

Steven Tyler-- Hot or Not?

Mom and I have our opinions and since there is a 20 year age difference between us, we are curious to see what other women think of this rock legend. I'll tell you what we think in a couple days.

Share here or on our facebook page!

2012-01-18T09:56:00.001-06:00

Our girl turned 18 months old 2 days ago! I can't believe it. In a few short months, she will be two. It seems like I just had her and yet she is growing.

And it's true--she is actually growing. She hit the 16 pound mark this week!

She has perfect, un-used baby feet. They are soft, and delicate just like a newborn. I love her feet.

Did you know that you can now 'follow' my blog just by typing in your email address on the right sidebar? Check it out. If you aren't officially following, I would love for you to join so that I can see who is reading. Also, if you haven't--please like the Raising Redheads Blog on face book. This gives me a chance to interact with you guys--which I'm all about!

It's a super cold morning here. The weather has been a bit bi-polar this winter. In fact, last week I had the kids out for a long walk and jumping on the trampoline one day and we were sledding the very next. Usually by mid-January I'm itching for spring, but thankfully it hasn't been too bad of a winter so far. I'm excited for spring-don't get me wrong, but I'm far more cordial with winter than I have been in the past.

We have been inside alot. I try hard not to get out if it's unnecessary. It's a ton of work to get the big kids dressed and ready for anything but besides that, I just worry about Mabel during this flu season. Germs are not our friend so you will almost always find us in this house. We have all we need right here and most days I'm ok with that.

It's strange; Old Ramee was a busy, busy lady. New Ramee quite likes the solitude of home and pajamas. It feels nice to have settled into this comfort inside of myself.

Honestly, as long as I get to look at these [and smell them] a few times an hour, I'm good anywhere.

weekending.

2012-01-17T10:49:00.000-06:00

Weekends are for wintering.

Snow ball fighting.

Sledding.

First times!

Posing & Cuddling.

Bundling.

Playing. Snow Angels!

Yawning.

Enjoying. All things winter!

Weekends are for hiding away. Tucking in close & kissing.

Weekends are for love. Playing. Hot chocolate. Loud music. Company. Sleeping.

Cold skin. Hot baths.

Weekends are for cooking. Easy bake and brownies.

Our first snow delivered and we ate it up! How did you enjoy the white?

Guest Post by Rache. [2012 version]

2012-01-16T08:50:00.000-06:00

Hi everyone. It's Rachel again. I'll be signing autographs just as soon as this post is published. Please send your favorite picture of me with a self-addressed envelope and I'll be sure to get it signed and mailed back to you. In all seriousness-how awesome is it that this blog has taken off the way it has? The audience is expanding and growing and I cannot believe how many states and even countries now are reading "Raising Redheads." I do believe that allows me the privilege of being somewhat famous now. So there.

In all seriousness, I've been telling Ramee for awhile now that I wanted to guest post and put some thoughts out there. I wanted to write again since my last one was roughly 9 months ago. I wrote about the "new Ramee" and tried introducing her to you, her readers and friends. I tried to encourage each of you(myself included) to not be afraid of this new Ramee, or her new life, ideas and things to say and I know alot of you took them to heart, and some of you steered away over time, maybe still scared or really busy. That's all ok. I just wanted to come back again and talk about some things that maybe Ramee would never say herself, but mostly they're things that God has impressed on my heart as of late to share with you readers, who I know are trying your best.

Looking back over those last 9 months I see that alot is different now. Mabel is no longer swaddled. Ramee no longer can maintain all of Mabel's seizures on the charts she was creating, and I am not blogging from her toy room. Instead I am blogging from my apartment. Someday I will share my OWN personal story of what led me here, but to be completely frank, I'm still carrying my new found friend, Shame with me. Ya know how Ramee has a friend called sadness? Mine is shame. Embarrassment. Disappointment. Failure. --All of those were friends I did not ask to make, someone else made them my friends and that's the story I will someday tell but in the meantime, I am blogging from my apartment which means that I no longer wake up in the madness of Ramee's everyday life; I used to though. And that's where I was blogging from 9 months ago.

Mabel for the most part has stayed the same besides not being swaddled anymore-literally. She still isn't sitting, walking, crawling, rolling, looking directly at anything, or having a seizure free day. Mabel has really been consistent. Being consistent is really important-whether in school or in work, in prayer or in parenting. To hang in there and maintain what you've got going the best you know how! In the beginning of anything, it's always easy. Always! You have a new found drive, a passion ignited! You have found a cause or a resolution that you are proud to proclaim or to be a part of. At the end, it's always easy too. You have crossed the finish line and you have achieved your goal. You ran the race or you aced the test. It's the middle--that'll get you every time. The middle is really uncomfortable. You feel every ache and pain of running that race, your ankles are bowing and your forehead is drenched. At this point it'd just be easier to bow out-gracefully or not. You are spent and your energy is depleted. I feel like this is relevant now more than ever in Ramee's life. Our beginning took root 8 years ago and there is no end in sight, but that darned middle-it's not easy. I come to you from the depths of the middle of my friendship with Ramee.

I must first say that I am hoping our friendship is not intimidating. We were not just birthed friends out of trials in our lives this past year. We have always talked everyday. I have lived with her and she has lived with me. I have stayed in her grandpa's basement catching mice, and her sister has slept on an air mattress in my living room. I say all of that not to toot the friendship horn, but to just say that we have always been this close-Mabel alone has not spurred this on. Don't ever let the idea of ME "always being around" make you feel like you can't be-I don't EVER want that to be felt by anyone. Maybe none of you feel that way and it's all in my head, which is also a great possibility HAHA.

But here I am in "the middle" of my relationship with her and it is wonderful and I would never want to be anywhere else than wherever she needs me-but it's not always easy here in the middle. It takes effort and it takes energy to maintain any relationship, especially one that is wrapped tightly around a new reality and a mysterious child. My energy is depleted from my own everyday chaos, my own emotions and circumstances, let alone trying to be of any kind of encouragement. But I am trying my best not to fizzle out and leave her stranded. To be frank, I force myself on her. There, I said it. It's true. I barge in in the morning and I leave late at night. I stay for dinner and sometimes I bring lunch. Most days she lets me in, but I think there might be some days she holds back and that's alright too. I know that consistency means probably the most right now to Ramee. Whether she answers texts or calls you back..don't be put off. If she doesn't accept your dinner invite--still go out of your way to ask. It means alot to her but just know that there are alot of hard days and some really good ones thrown in there too. Bare in mind that a day out will require alot. She will either have to tote 2 children with her or arrange for them to be watched. Plus Mabel. and her meds. and her tube supplies, and Mabel will eventually get over stimulated which will result in having to leave wherever you are. So maybe just take her a Dr Pepper and sit and talk in her orange kitchen.

My Harper girl(or Harp, as we like to call her) sees Mabel everyday and I know she knows something is definitely different. Just tonight at dinner Harper was waving to a little girl at the next table over and tears came as I imagined that little girl would be Mabel if she could actually sit at the table, or eat for that matter...but she can't and so Harper says "tube" when Ramee is giving her her medicine in the gtube and Harper worries about where Mabel is. Harper pushes Mabel upright when she starts to fall. She yells "NO Mabelllllllll" at her when she starts her night cry. What I love most about their friendship is that Harper expects nothing from Mabel, she knows Mabel doesn't have much to give back to her-she too has just learned to force herself upon her. Here's a toy Mabel, and she shoves it in front of her. Sit up Mabel, and she pushes her up. She has made it a point to, whether Mabel is "special" or not, to still maintain a normalcy with her, she just forces herself upon her as if nothing were going on with her.

I wish we could force normalcy upon Ramee as well. Tell her how your kids are doing at school. Invite her to your daughters dance recital. She might not come, but do it anyway. She might not have alot to give back, but she still wants to be involved, I know that. I speak from experience in knowing that the feeling of needing to "tread lightly" about your "normal" child is there. I get that. Harper is there every single day and I can assure you that for the most part I am sensitive to certain things, and tuned into alot, but I really am free in talking about what Harper's doing, her everyday stuff, her milestones, etc. It's okay because that IS my life. Harper did come down the stairs on Christmas morning and she did go sledding today. My life is not any less important simply because it's on a different path, and neither is anyone else's. I want Ramee to stay with me though. I want her to stay tapped into who she still is. She IS Harper's Aunt Ramee! She was at some point your child's photographer or pilates instructor. She still is a party planner and a woman. For Christmas I got Ramee a new cookbook binder to replace her old one filled with her recipes. I wanted her to remember the Ramee who loves food and cooking for her family. I don't want her to lose sight of who she is when it would be so easy to just immerse yourself into the new and say goodbye completely to the old. So... remind her of who she is. I know some of you have some really embarrassing high school stories and pictures so by all means, let's plan a day to just get to know that Ramee. haha. Sorry Rame, I never got to meet her so Im interested ;)

Even as I type this I am leary of my words, but I'm going to post it anyway and pray I'm using the right "terminology." I got her a card this past week and on the front it said "This too shall pass, Maybe like a kidney stone-painful and slow but it will pass." It was meant to be funny because when I first came here I developed a .5 mm kidney stone that I had to be put to sleep for(true story) to have it BLASTED out of me. I also aspirated and had to be intubated but whatever, that's besides the point. What Im saying is.. I gave her that card to just encourage her that her "sad day" would pass, but then as I left her house I immediately thought-"Great Rache, you just gave her a card that said it would "pass" -Mabel is her child forever-this is NOT going to pass-UGH!" I say all of this to let you know that I too am kind of nervous about what I say or hesitant. I retract words and say alot of "well.. you know what I mean!" I usually just say it though. I love her and she loves me and I know that SHE knows at the end of the day I would never say anything to intentionally hurt her. Ramee doesn't need, nor does she want, friends or family who are living in bondage of what they may say wrong. You can be sensitive, but please don't be silent. Again, I know firsthand how sad the silence is in the dead of night when no one is calling, the texts have stopped coming, and there are no cards in the mail. It's deafening really.

I believe more than anything that Mabel deserves to be surrounded by people that adore her. You can be baffled by her, intimidated by her, or even unacquainted with her-but I think she should be surrounded by people who love her tirelessly. She deserves friends, even if they are walking, talking, in therapy too, or jumping in mud puddles-these are the people who will one day be her age in school, in society, in the workforce and I believe that we have a responsibility to teach our children to help kids like Mabel-they will inevitably be helping to raise her. I was just telling Ramee today how tight knit this town is. It is the picturesque town for making memories-a sledding hill, a homecoming parade, football games after you've long graduated, etc. If this town is to remain as close as it is now, and I believe it will, then we should be tuned into this Mabel Audrine and made aware of her life here with us. As a mom especially, most of us know how important and how fun it is to see our children socially interact and develop these childhood friendships-they're the foundation for alot of memories. Whether those memories will appear "normal" is besides the point, they remain memories nonetheless. My heart breaks for Ramee as a mother because I know the desire I have inside of my own self to watch Harper talk to other kids or look on in amazement as she shares a toy. These things are near and dear to a mommy's heart. I don't want them to ever be stolen from Mabel.

Getting the chance to step in and blog every now and again about what it feels like to be here, where I am -really close, but still not close enough to truly truly relate. I don't like that word relate when it comes to special needs parents. I hate it actually. I feel like if we all waited until we could "relate" to someone in order to be there, we would all be doomed. The fact is, you don't have to relate in order to care. I am dipping in and out of both worlds , the inside where I know so much and feel so much, but the outside where I am attempting to be a voice for those of us, family included, who don't know what to do or how to even be present again for this family. I would encourage you to just put yourself out there and do it. Whether it feels odd or awkward or embarrassing or really fluid-just be available to them. Not only to Ramee, but Daniel as well. Some of your husbands or brothers simply reaching out to Daniel could make the most profound difference. Women tend to rally around one another and form a bond, men are usually more hesitant to put themselves out there, but there is no reason that men cannot step up and root for this special needs Dad, who is also navigating new waters.

　Coming together is a beginning. Keeping together is progress. Working together is success. ~Henry Ford

I love the above quote because I think it speaks so boldly about coming together, staying in it together, and making it to the end together. Join in on the race- the race for an answer, the race for friendship, the race for joy, the race for peace, the race to God's will, the race for more laughter, the race for understanding. If you're like me though, the idea of racing and Ramee put together never end in my favor-we all know her idea of a leisurely walk is never leisurely ;)

Love you Rame. Trying my best to be your voice as you use yours for a greater purpose.

Rache.

special needs for my God.

2012-01-15T10:49:00.001-06:00

She takes my breath away. I honestly wake up and feel desperate for her. I can't wait to sweep her up out of her warm crib and wrap her in my arms as she crinkles her nose and smiles gently. I watch her intently and memorize her every expression. When I say I am desperate for her, I mean it. I am.

And lately [finally]--she is just as desperate for me. Some call it separation anxiety and although I agree to a point, I can't help but understand her state of panic. I'm her steady. She feels me, smells me, has learned to see and hear me the way that she does and she depends on me. For everything. I am the one person that she needs to survive and she knows it. And that's how I feel about her. I can't live without her and I'm not sure how I ever did. I feel this way about all of the children, of course, but this dance that Mabel and I are doing is unique and brilliant. I burrow myself into her and she does the same with me.

What I realize that I'm learning daily in my interactions with Mabel--mothering her, snuggling her, caring for her--is that as much as she depends on me, I want to be dependent on the Lord. As much as she has to trust me to get her from place to place, I want to trust God to do the same for me, in all I do. As much as Mabel cries out for me when I leave a room, I want to do the same with Jesus. I want to long for Him, cry out to Him, be so incredibly desperate for Him that I cannot breathe or function without His presence.

Don't get me wrong, all children need their parents and have to trust them to get them through each day to an extent. However, most of our children begin to be self sufficient by at least 18 months of age and they depend on us less and less. Harper is almost two and she can tell Rachel that she wants a drink, a bath, if she's tired, etc. Mabel cannot do these things. She cannot express to me what she needs. She simply has to trust that I know and that I love her enough to provide those things for her. What a perfect example of how our relationship with the Lord should be. And yet she knows no other way, which is why it is so pure, so innocent, and almost perfect.

I can't always verbalize to Him what I need. But He knows anyway.

I can't always reach out to Him when I need to. But He's there still.

I can't always drink in His goodness, at least not without choking, but He finds a way to nourish me regardless.

I'm in no way comparing myself to God by taking care of Mabel. In fact, it's just the opposite. I want her to represent me in this scenario. In fact, it's rather simple if I dare say--

I want to be a Special Needs child in my walk with God.

I want to be less self sufficient and more God dependent.

I want to depend on Him more and more and myself less and less. I want Him to bathe me in mercy, feed me until I'm full, carry me when I am weak, lift me up when I can't move on my own, wrap Himself around me when I need comfort, prop me up when I cannot sit, rock me when I'm tired and encourage me every step of the way.

I want to be desperate for Him in such a way that I cannot fathom one moment without Him.

-----

There is a story circulating on facebook about a little girl who is in need of a Kidney transplant. I haven't read the official article but it is irrelevant really. The problem is that the children's hospital where the small girl was being seen was going to refuse the transplant because she is 'mentally retarded.' Some people have clarified that she, in fact, has many other life threatening conditions and therefore the hospital wasn't refusing based on her mental status but rather other issues. However, people are outraged and so am I.

Whether this story had any truth to it didn't matter to me. It made me think about our future with Mabel and how scary it truly could be for our sweet girl. We live in a society that tends to look at children and adults with disabilities as 'less than' or of less worth than "healthy" people. It is sickening. Mabel's life is worth no less than anyone else's--no matter what. She is just as worthy of life, and care as anyone else.

Where am I going with this?

Once again, I dare to say that our God has a much different outlook on these children than our society does. In fact, I'm sure of it.

They have got it all right, in a sense. They are a beautiful representation of our Lord and what it means to be dependent on Him, fully and wholly. If we will open our eyes to the things that their little lives may teach us, it would be astounding.

Mabel teaches me every day what it means to be better. To trust more. To judge less. To accept grace. To try harder. To rest. To just enjoy breathing. To smile. To fall into the arms of my God fearlessly.

Because I watch her and I study her. I see how whole she is in her spirit and it is a gift. It is absolutely a gift. Mabel's life serves such a huge purpose and I feel like because she is here and she is mine, I have to share her with each of you so that you can learn from her as well.

One day with Mabel really will make you understand God in a whole new way. Some of you may feel intimidated by our situation, but please don't. Please come in and hold our girl. Please come in and smell her skin and watch her giggle. Please just experience what God has put here for greater things that we can even imagine. She will change you without even knowing it. She will attach herself to your heart and not let go.

Special Needs in our world is not the same in His.

I'm longing for the spiritual likeness.

favorites.

2012-01-14T10:02:00.000-06:00

I am so enjoying our Raising Redheads facebook page! It gives me a whole new way to interact with you and touch base about your lives as well. I love it. Awhile ago, I was asked to write about some of the people that inspire me. It humbles me every single time one of you say that you are inspired by what I write here. It has always been my intention to bring glory to God while telling our story. At first it was the mundane day to day of raising young children and being a fun, spunky stay at home mom. Now that our lives have taken a drastic turn from mundane to chaos and sometimes even sadness, I am overly touched my your enthusiasm, encouragement and support. You have been so faithful and caring. I want you to know we appreciate and love each of you dearly. It is always my hope that through this page, someone will walk away with something powerful that God revealed to them, whether it be through my writing or not.

With all of that being said, here are a few of my favorite bloggers who have inspired me not only in the last year but for many years now. They are all beautiful, wonderful women and I encourage you to grab a large cup of coffee, get comfy and get lost in their stories. You are sure to walk away different--guaranteed.

Stephanie Nielson: The NieNie Dialogues.

Stephanie is a young mother of 4 children (soon to be 5). She is Mormon. She and her husband Christian are madly, passionately in love. I have read NieNie's blog for many years and loved her joy of life.

A couple of years ago, Stephanie and her husband were in a private plane crash and she and Christian were both badly burned. Stephanie's body was burned more than 80% and she was in a coma for many weeks. Since her recovery she has had many surgeries and has continued to have an incredible outlook on life.

She is amazing.

Kelle Hampton: Enjoying the Small Things.

I started reading Kelle's blog this year. I have so related to her in alot of different ways. She gave birth to her second daughter, Nella, 2 years ago and right away was thrown into a life that she hadn't planned for. She embraced it right away but not before experiencing agonizing sadness. Nella was born with Down Syndrome. Kelle blogs daily about her life with her girls. She is currently right in the middle of a huge fundraiser for Down Syndrome-trying to raise $200,000 before Nella turns 2 in just a couple weeks.

You'll enjoy this blog for so many reasons, but most of all, the reality behind it.

Angie Smith: Bring the Rain.

I started reading Angie's blog long ago, shortly after she buried her 4th daughter, Audrey.

Angie's husband is part of the award winning Christian band, Selah. She is an incredible homeschooling mom who loves the Lord and is deeply devoted to her family. She is an author (both books I have read and adore.) You can read her journey with baby Audrey and about her trials and triumphs since their lives changed forever by visiting her blog. She is sure to encourage your walk greatly!

Tiffany Darling: A Moment Cherished.

The other women I have mentioned are amazing but Tiffany is an in-real-life [online] friend. We spend time speaking through email and text and she encourages me daily. Tiffany is a homeschooling mom of 3. Her husband Jim is a pastor. They are a young family who recently adopted a sweet little boy, Jamesy, from Ethiopia and are in the process of adopting a little girl as well. Tiffany's life was changed drastically this year in more ways than one. Not only does Jamesy have a medical condition that is very similar to Mabel's in alot of ways but her oldest babe, Cadi, was recently diagnosed with a rare disorder as well.

Tiffany is a strong, faithful, sweet spirited woman and dear friend.

If you're looking for a gentle voice to add to your reading list, please visit Tiffany's blog and follow her journey. It's bound to be beautiful.

------------

These are just a couple of my favorite blogs. If you'd like me to, I can absolutely share a handful more.

As always, thanks for loving me and supporting me in such profound ways. I'm forever grateful every single day. Today I woke up feeling pretty sick so your prayers would be greatly appreciated. Also, if you're in an area of snow like we are-please be careful! Rache and I both fell hard on the ice yesterday and are feeling it today. My plan is to stay in, under some blankets with at least one child all day. Let's see if they'll cooperate with me [doubtful.]
Happy Saturday!

snow day.

2012-01-13T10:04:00.001-06:00

It feels months over due but I'll take it nonetheless.

After a week of evaluations, medicine adjustments, increased seizures, decreased pooping, insurance calls, possible curvature of the spine, definite delayed gastric emptying, phone calls and welcoming my friend sadness back into the house--I was beyond ready for something refreshing and exciting.

Snow is my absolute favorite thing in the entire world. It's no secret.

I woke up feeling child-like in my excitement yesterday and by 8:30 am, already had the kids up and dressed to join the adventure. Cold as it was, we only stayed out for about 25 minutes but they loved every second of it. Nora lasted much longer than Braden, who came in crying and wanting hot chocolate.

We made it, enjoyed it, and said 'cheers' to our first snow day of the winter.

Technically this was Mabel's first snow. Last year she was still sleeping all day every day and she was far too little to be out in it, so I was determined to at least sit her in it this year.

She didn't seem to mind [of course.]

Happy First Snow, baby!

I packed up sadness into the pockets of my pink snow pants and decided to let him off at the bottom of the sledding hill. He'll return again soon, I'm sure, but it is always nice to send him on his way. At one point I wasn't able to let loose of his company. In some sick way, he was all I had to hold on to. But lately, I have discovered that a little bit of distance has been good for the both of us. Sadness is always welcome here. He feels familiar and has seen me through many of my most terrifying days. But he doesn't need to stay anymore. He can visit and go. So today we parted ways and I said, "Farewell for today, sadness....I'll be here when you return again..." I felt him let loose and leave as I swallowed in the coldest air I have ever breathed.

As I walked up the hill with my ~~big~~ little girl, I watched her face and memorized it.

She loved this day. She loved this snow day and sledding with her mama. This is what it's all about. Letting sadness go so that I can enjoy these moments with my children--and really enjoy them.

There is nothing like the softness of a snow day. The beauty of the white is so light and refreshing.

Yesterday was the day that I said goodbye to sadness and welcomed consciously happy moments for the week. Despite the other stuff going on around me [as always], I enjoyed yesterday's white for the beautiful things that it offered. 25 minutes of clear, quiet, happy.

My snow day.

jealous god.

2012-01-12T09:28:00.001-06:00

How many of us have said it?

I want to serve God, but...

That was me today. Just thinking out loud and blatantly saying that I want to serve God, Honor Him, bring glory to His name, but not at the expense of my child. Not at the expense of my family, my marriage, my home. Why must it come at such a cost, Lord? Why must serving you and bringing glory to you be so difficult and trying?

And then, I was reminded by a sweet and beautiful voice of reason who just happened to be sitting across from me: Because we serve a jealous God.

And He is saying that it may come at a high price. It may cost alot. It may be at the expense of my child's life or quality of that life. It may come at the cost of all that I once envisioned. But no matter how it comes about, He will find a way to bring glory to Himself.

And that is what I have always wanted.

It's just that when I used to read about our Lord being a jealous God, or a selfish God I thought alot like many of you are probably thinking in your walk...

"He's jealous for my time. Reading my Bible, attending church, witnessing. He's jealous of my time with Him and will grab my attention somehow. He'll convict me for my time."

[please imagine me saying most of the above quote in a somewhat sarcastic manner. It's only appropriate for the magnitude of what I'm about to say.]

I'm here to tell you something dramatic and life changing. Something that I'm having to learn the hard way and want to share with you in hopes that you won't have to experience the same.

The Lord is jealous of your LIFE, dummy.

The faithfulness of the above mentioned things matter to Him but they only pale in comparison to the every day of who you are. The ins and outs of what you have to offer our God.

He isn't jealous of Bible reading time. He is jealous for all day, every day, turn-to-me-in-the-darkest-hour time. He is jealous for wake ups and good nights and everything in between.

Our God has a plan set in place for your life already. It was in motion long ago. It matters very little to Him the plan that you have made for yourself. In fact, maybe that plan has become part of your idol and the Lord has much to say about that. Maybe the plan you made was all part of your friend, Control's perfect outcome. God isn't a fan of your friend Control.

He's a fan of Himself. God. Holy One. Only One.

Almighty.

So get a clue.

Forget trying to please God in the middle of a routine or a plan. Try living for Him always. Try seeking Him desperately. Try loving Him wholly. Try reaching out for Him only.

Try letting go and letting yourself be jealous for Him as much as He is for you.

Because it's alot.

It's so much that He will change EVERYTHING if He has to just to reach your nasty, broken, messed up heart.

And I know from experience.

He will change EVERYTHING and it will be a beautiful, chaotic, tragic symphony of perfect jealousy between you and the living God. A God who will use anything to turn your heart into that which pleases Him.

Something incredible happens when you give up yourself and allow the Lord to be selfish for you. Suddenly you see things much different. Suddenly you are on the outside of a giant bubble that encompasses everyone and every thing else.

-----

I have had a couple of you make it known to me that you are questioning God because of all that is happening with Mabel. I want to reassure you that I have never-not ever doubted our God in this journey. Questioned His purpose? Wondered about His plan? Yes.

But what's beautiful about it is that He will use ANYTHING to be caught up in a dialogue with you.

Has Mabel and the questions you have about her led you into conversation with God?

If so, then His purpose may be fulfilled in you and that is ok with me. In fact, it's brilliant.

I just want you to be clear that He isn't wanting to draw you away from Himself but the fact that you would speak to Him, wonder what He's up to, and think about it is a beautiful and powerful thing.

If we begin to recognize the Lord as the selfish God that He is--in all of his masculinity and strength, we will soon have a different perception of this King who adores us.

He is [righteously so] Jealous for your Spirit.

He is oh so jealous for your Life.

Give in and give it to Him.

Surrender your life and allow Him to work in the depths and crevices that you didn't even know needed filling. Because He will. He will fill them so completely full of Himself.

They will be overflowing with God.

The beauty in the surrender is all that follows....

No matter how saturated and heavy it feels--it is the most beautiful type of full you can experience.

Fill up today, friends, and breathe Him in.

He loves you. He is jealous for you.

He is near.

Friendship.

2012-01-11T10:32:00.001-06:00

I've always had many friends in my life. I have valued friendships and learned greatly from each of them. Many times, I have prided myself on the ability to share life with many people, all who are very different and even bring those friends together to build new friendships. It has been very fulfilling for me to love so many amazing people and to have them love me in return.

Over this past year my idea of many things has changed. For me, friendship has been redefined by two babies. I watch them-in all their purity for one another and I have learned how unselfish they are. I have learned how faithful and true they are. I have seen just how able they are to carry one another and how they do so out of complete and total love for each other. They need nothing in return. They are the perfect example of friendship and love.

How blessed would we all be to have just one friend so faithful and true--let alone a handful.

I feel incredibly blessed just to watch this friendship in each element and circumstance and see how rapidly and aggressively it blossoms. Their love for one another is untouched. Unchanged. Unaffected.

It's a beautiful reminder of our Lord and the people He has brought into our lives.

I am so thankful for these little girls.

2012-01-10T18:29:00.003-06:00

If last night was any inclination that today would be my favorite day, the proof is in the ~~pudding~~ cookie dough. We played UNO in front of the stove while the aroma of fresh baked chocolate chip cookies lingered. Although I knew the cookies wouldn't turn out [because they never do]...we still indulged on the dough and each other's company.

Later in the night, Mabel started her night cry and I was sure that it was going to be a long, sad night all around. But then I swept her into my arms and rocked her as I sang in the dark of night. Soon, my baby was asleep in my arms with her mouth wide open and I sighed with great appreciation. What an awesome gift I have been given and what an awesome God to entrust her to me.

Then, I woke up at 11 am and looked beside me where my husband had placed my coffee from an hour before as he was trying to wake me. The day was warm and promising. We dressed the kids and headed out the door to enjoy 60 degrees in January. I watched Mabel swing in amazement. She looks bigger than she did a few months ago.

Daniel jumped with the kids and soon after we took a long walk as Nora rode her bike through town.

Brother made my day when I looked up and saw mittens on his hands but no socks on his feet. Makes sense to me.

I watched my kids in the freedom of our day and thanked God for the opportunity to homeschool. I thanked God for the sunsets we've been having and for the upcoming snow we may experience. Mostly, I thanked God for today. Simply. Beautifully. Today.

Sister rocked the sweetest boy cap. And I adored it.

Today was my favorite day in a long time. Such a long, long time.

Kids were kids. I was mommy. God was God. And all aligned just right.

Sort of like it did for Nora last night when she gave her brother a wedgie in absolute perfect form.

What a great favorite day.

What a great, great day.

Filing it away in my heart for safe keeping.

wedding recap.

2012-01-09T12:50:00.000-06:00

Our friends, Steve & Abrian, got married this weekend.
Abrian made a beautiful bride and the redheads were both in the wedding, along with daddy.

We enjoyed being dressed up together.

There were moments when I felt like "Good life" by One Republic was serenading our weekend. When I see all of my children together, I can't help but gasp in amazement.

Driving into a town unknown between the wedding and reception with two babies riding dirty in the backseat and my soul sister beside me was by far the calmest ride I have taken in a very long time.

It gave me time to reflect. On love. On being undiagnosed. On marriage.

And then the sky opened up with a lollipop-like canvas of color and all was right in the world

My boy looked so handsome. And as he prayed with his head down across from me, I felt like God was really pulling through for our family. It is a moment like that, in all of His reassurance, that can change everything for a person.

Darling, Dainty, Delightful little girls in their innocence and beauty reminded me of all that is spectacular and good about this life. This world that is not my home but that I am living in...

What a sight for a mommy's eyes.

It's been almost 2 weeks since we got the news that was no news and I feel strangely at peace with it all. The Lord is quickening my heart to the quiet and the calm. I am settling into this place of stillness and it feels right with my spirit.

Just as Justin Bieber rang in the New Year singing "Let it Be..."

'And when the night is cloudy, there is still a light that shines on me. Shine on til tomorrow. Let it be!"

"There will be an answer...let it be."

But in moments when I find myself in the middle of a long, hard, deep fight with the man I love who is also Mabel's dad, it is sometimes more difficult. He screams that he can't change this for me and I fall to the floor in anguish, curled up like a newborn in his arms of love that are oh so forgiving. And I am once again reminded that this marriage has changed time and time again. I sat and watched the innocence and hope of new vows and I peeked out of the corner of my eye towards the man I love.

It was a sweet reminder that although this is not what we had long ago dreamed, it is still our life and it is still wonderful. The surrender is far greater now but it is equally as worth it.

We wish Steve and Abrian many years of happiness and hope that the Lord will bless their marriage and make Himself known in all the ways that are important.

Every day is hard but if you work at it, when you are in the fight of your life you will feel the nudge of that oneness holding strong and battling for you. We hope to always help guide you and encourage you in your new journey together!

red red red.

2012-01-06T22:19:00.000-06:00

Whoever said that redheads can't wear red...lied.

Redheads can do whatever they want. In fact, you can all do whatever you want. We don't live in a world that should involve such silly rules and regulations on who you are or who you want to be.

Wear red lipstick. In fact, find the exact right shade by trying on many different ones first. It's fun. You're a woman. Enjoy it!

Wear red nail polish on your fingers AND your toes. You'll likely feel sexy and energized.

Or maybe not.

But either way, your nails will be painted and you'll feel good about that.

When Nora saw the very first photo above, she said "your lipstick is too bright. that doesn't look good."

That defeats this whole post, Nora. Thanks babe.

Speaking of other funny things that the kids have said lately:

Just now Nora told me that all the little men in her mouth were having a party and were making it hurt.

Hmmm? Germs, maybe?

Daniel said to Braden last night at bedtime, "Hey do you know what's cool?"

Braden replied quickly (because he is far too smart) "The fan?"

And he was dead serious.

hahahahaha

-----------------------------

So today was a Murphy's law kind of day. Mabel was great. In fact we have a new bedtime routine that has resulted in no night cry for the past two nights! I'm so thrilled and hopeful that this is really going to work for us. But back to the awful day...

Daniel wakes up at 2 to start getting ready for work and notices that the kitchen sink is completely backed up with food and water from our garbage disposal. I mean COMPLETELY backed up. So he decides to stay home and try to handle that situation...

In the meantime, I'm supposed to drive the redheads an hour & a half away for a wedding rehearsal for a wedding that they are both in tomorrow (as is Daniel.)

The redheads get car sick.

I can't see to drive at night because I have nystagmus and my eyes shake and I can't focus and it's dark and my null point is up so my neck starts to ache and on and on and on.

But I try anyway because we really need to be at the rehearsal.

I got lost.

Like really, really lost.

...and turned around and came home...

With a pounding headache, a sick kid, and awful cramps.

Awesome.

The sink is not fixed. Our friend, Jeremy, who just happens to be a plumber is going to do his best to fix it tomorrow. Here's hoping...

Onward to wedding weekend.

Photos to come.

Please--for me--wear red this weekend (and then post it on our raising redheads blog facebook page!)

I'll do the same♥

No binky!

2012-01-05T09:35:00.000-06:00

It's been 2 nights and this is day 3 of

NO BINKY!

It's been like a withdrawal process and it's actually pretty sad but the boy is 4 and I'm so proud of him!

More to come later, but just had to make an official announcement!

Letter to the redheads.

2012-01-03T09:25:00.000-06:00

Nora and Braden,

You have no idea how much I love you.

We have had a hard couple of days. Even though I pray you won't remember times like these, I am always afraid that these moments--these bad days--are what will define our relationship, and I hope not. I hope that above all else, you will remember the tickling and the dancing. I hope you'll remember the smell of cookies baking and the sound of my laughter.

Not the sound of anger or yelling. Not the sound of frustration and exhaustion. Those moments are ugly and these days are long. They are oh so long.

Nora, baby...you are testing mommy a little more each day.

Although you are learning alot and we are doing some great school work, at the end of it all I feel defeated most days. I know it's worth it because I see in you so much growth and so much beauty. It's always worth it. But your getting smarter and much more bold in your approach to disobeying me day after day. It's hard figuring out a balance of loving you fiercely and disciplining you gently.

Brother...oh my boy.

You still hang on me like an infant most days. You are incredibly needy right now, as always, and it's overwhelming. So all in all--not alot has changed. Only now, you're much older and I'm trying to remind myself of that. You yell at me often and have very little regard for what I say in general. You are absolutely in your own world most days and don't care to come out of it to listen to a word I might have to say.

But when you do, it's so rewarding for me. You're witty and funny and incredibly smart. In fact, so smart that it's almost scary.

I'm not writing these things in order to justify my moods lately. Rather, I'm writing to remember these days of being locked away tightly in this house with you.

I see you from sun up until well after sun down. I breathe in the smell of you and it's small.

It's such a sweet reminder of how little you still are.

Truly.

I want you to know that as your mom, I feel so many deep things when I look at you.

First of all, I feel tremendous guilt. I feel guilty that I have to give so much time and attention to Mabel and her care. It's time that used to be devoted solely to you. There was a time when my only purpose was waking up and playing the day away with you both. I felt lighter. It was easy.

I think in so many ways, I have closed myself down even more as a mom to you both because of the guilt that I feel. It should be opposite but I just cant live up to the expectation of the mom that I had in mind all those years ago and so because it feels impossible, I have given up trying.

Not always...but some days.

Which leads to more guilt.

Nora-I feel guilty for yelling at you. I'm your mom and you disobey and yet I still feel this extreme, immense, excruciating guilt for correcting you.

It's hard; this mom business.

Braden--I feel guilty that you're the only boy I'll probably ever have. I say probably because God is God and ultimately I live according to His will. But the thought of not giving you a brother is hard for me. I feel guilty because you are so much like me in so many ways and I just think you're going to be very misunderstood.

I can tell you something that I will never feel guilty for, though--defending you.

I will always fight for you. You deserve that and so I pray for you every day and your bright, loud, vibrant spirit.

There's so much guilt at the end of each day that I have to literally ask God to cover me with His mercy in order to start again tomorrow. I constantly feel like I only get one chance at this and I better get it right. Yet, without the Lord, I wouldn't stand a chance...so I depend on Him.

Lately, He and I are quiet with each other so it's been a little more difficult. But I know He's there and I know you both know that He is. So I think we'll all be ok.

There's alot resting on my shoulders, guys.

I can't wait until the day when I can say so much of this to you and you'll both understand. I want so badly for you to just look at me and know how hard it all is for me to parent you day after day and how strongly I want to do well at it. It's all I have ever wanted to do and I just desire to be great. I want to be a mother that you are not only proud of, but passionate about and thankful for. I want to be a mom that loves God visibly--so much so that it shows up in you.

I pray that every day.

Thank you both for loving me unconditionally. What is so wonderful about you is that you are so different from one another in so many ways. You challenge me but without you, I wouldn't be fulfilled. You do that for me and it's incredible. You are both such a gift and I know just how blessed I am.

I want you to know that I do not take you for granted. I love you both more than I could ever explain and I wish that I didn't have this whole long, draining process that I have endured to shape me into the mom that I now am. I believe I am better in so many ways but please be patient as I am still grieving the mom I really wanted for the both of you. She is much different now and sometimes it's hard to look in the mirror because as I don't recognize myself-I pray that I can come into this new me before you ever know any different.

I want you both to know that my love for you is so deep I could die just thinking about it. I love Mabel incredibly but never more and never less than either of you. You're all formed so tightly inside of this heart; in each particular room settled just for you. I feel guilty for the attention that Mabel needs right now but I need you to hear me when I say that I don't feel guilty for having her OR for giving her the greatest care I can.

She, too, is a gift.

Special, unique and purposed for all of us.

Just like any new gift that is complex and without instructions, I am learning to navigate your sister. I am learning to balance the act of her care and your childhood. I may fail miserably some days but I desire to be great at all of it and I believe I will be.

I know I was made for this. I believe God gives 'special kids to special parents,' but only in that each of you are just as special as the next. Parents, in general, are special because this is no easy feat.

This is hard, grueling, draining and consuming.

It's the one thing in this world that you want to get right and be great at and yet you never feel quite good enough. But again, we serve a God who is bigger than I, and He is the ultimate Father. I trust that He will just continue to mold me until He comes again and we can live under His care for eternity.

Until then, there are going to be days when I mess up time and time again. Please know that it torments me far more than it will ever affect you (I hope.) Please know that I don't take those moments lightly.

I think about them, dwell on them, pray about them and think about them some more.

But I will always apologize when I'm wrong and I will always try to do better the next time.

I hope you'll learn to do the same someday.

I pray that you both have an understanding of integrity, discipline, self control, and compassion. Even more, I pray that you will learn the wonderful gifts of mercy, forgiveness and grace.

These are things that come in small forms, like apologizing after a hard day and things that will come in huge ways like when your life gets turned upside down. However it is that you experience them, I pray that it is life changing each and every time.

I am humbled by being your mom every day.

I wake up and feel so blessed just to be able to start over fresh and new. I feel humbled after each act that challenges me or each time one of you tells me that you love me. You forget quickly and move on and I love that. In fact, I want to be more like you in that way.

I'm so glad that God chose you for me and me for you.

I'm so glad we have these precious years together to grow and learn.

I may never be able to express to you how much I love you but I promise that I am trying every day to show you.

I hope you feel that.

You bring me the greatest joy.

I love you.

Mama.

Cold thoughts on a non-holiday.

2012-01-02T16:38:00.000-06:00

We welcomed winter yesterday.

Until then, it had been fairly warm outside. I was taking walks, the kids were bundling up and playing, and we were coming and going a little each day.

But yesterday the chill blew in from each old window and bit our bones. I wore two sweatshirts and we gathered blankets that were strewn about.

It was cold, cold, cold.

I knew winter by his familiar cloak.

My children become much 'different' on a winter day than any other. And quite honestly, so do I.

We had all been awake far too long and I ended the day with yells and guilt. That never feels good.

We just finished Christmas yet the kids 'have nothing to do' and so they're right where I am the entire day.

They refuse to take naps, they refuse to eat, they refuse to listen.

And I refuse to medicate myself.

So the end result is impatience and the loss of focus on my part.

When a day like yesterday rolls around it leaves me thankful for new mercies everyday.

It leaves me incredibly grateful for a God of grace.

It also leaves me profoundly angry in ways that I choose to never express-only to the person who happens to be with me in that moment (which is one of 3 people who have managed to stick it out with me this year.)

Did you know that most people don't have the endurance to just be around?

Life goes on for them and they are entitled to enjoy it. Embrace it. Live it.

And they just can't pull it together to show up when you need them to.

That is painful and lonely in the late of a cold night.

But it's true and as I'm growing, I'm accepting that alongside the rest of it...

------------

I got Mabel out of the bath today and she smiled up at me with a mouth full of really big teeth. I swaddled her in a towel and carried my 18 month old newborn down the stairs. I realized that she is being nourished only by a bottle and a few spoonfuls of applesauce or something of the like each day.

The days are passing and she remains the same.

Sometimes when I hear people say things like, "I wish they wouldn't grow up so fast," or "I wish they could stay this way forever," I cringe and wanna punch them in their face.

That was a little angry and very exaggerated but really...

You don't want them to stay this way forever.

You want them to grow.

Be careful what you wish for.

------

My happy for January 2nd?

The redheads laughing in the toy room right now & the sound of it.

Although I cherish these little moments, and will inevitably miss them as they grow and develop, I want that now. I want it more than ever.

It makes me happy--for today.

And that is all I can ask for. What a blessing.

***

I was in Wal-Mart a few days ago and overheard a man say to another, "That is retarded!"

The other man laughed and said, "Nah, that's in the genes."

I don't know what that means exactly, but as they laughed I felt helpless.

It's neither accurate or appealing.

Appalling for sure, but not funny.

...If I decided to add another resolution or idea for 2012, it would simply be:

Be Mindful of Others.

Because truly, everybody is going through something. And it just takes a little bit of effort, and compassion to be awake to it. I hope this year I can continue to grow, change and learn how to be more mindful.

More aware. More thoughtful. More compassionate.

OF EVERYONE.

Did you know that most people are considering today a holiday?

It's not though, really. So that's weird.

..........

It's cold yet again today and my tired body is giving way to it's persuasion.

Off to snuggle close to the laughter that is making me so happy.

2012-01-01T09:08:00.000-06:00

New Years Eve was interesting.

If sitting at home on facebook and watching everyone else's ignorance unfold is interesting.

We spent the night at home, with our children, Rache & Harper. We made homemade pizza and had brownie-cookies with chips and pop. It was business as usual for the most part except we let the kids stay up until 11 to watch the ball drop on TV (because we are on central time.)

Throughout the night, I checked into facebook and looked closely at the resolutions that were being made.

To lose 10 pounds, to eat at home more often, to find love, to clear life of negative people...

Everyone has their own goals and their own ideas of what they want for their lives.

It just strikes me as odd. I woke up today and nothing felt different. I can't tell it's a new year, only a new day that feels very similar to the days before. For me, every day is about trying to better myself in some way so that I can operate in joy, be a better mother and discover God more deeply.

I asked Daniel if he had a resolution and he couldn't think of one.

My friend, Tiffany, blogged about how in 2012 she is focusing on Self Control; not a list of resolutions, rather one word that is hard to tackle. I thought about it for a long time and can't think of one word that may define 2012 for me.

Other people listed silly things, or things that felt silly to me because all I can ever think about in situations like this are the mothers who lost children to disease in 2011 and they're only resolution is probably just to wake up tomorrow and breathe.

My eyes have been opened to a world that is unlike this one. It is unfair and potentially damaging to your spirit. It's sad and lonely and yet enlightening and powerful.

It has made me realize that no matter what 'resolutions' I make for my year, my days, my life...ultimately I am not in control anyway.

So for me, I have decided to focus on finding happiness every day...in some way. In something.

And not for my children. Not for my husband.

For me.

Joy & Happiness inside of my spirit, every day.

...this naked Barbie in the background of this photo makes me laugh. Day one of happiness--check.

Sometimes silly happiness is the best. Maybe that's what I mean after all...

Finding joy in the simple things and the silly things again.

Not taking every day so seriously and letting the sad be outweighed by the funny or mundane.

Because this year has the potential, just like the last, to bring alot of sadness and confusion.

So in the midst of the hard days, I am setting out to find happy.

Silly, Mindless, Joyful, Crazy, Happy.

Maybe the 'ignorant' resolutions weren't so ignorant after all. Maybe they all have the right idea. Focusing on something of so little importance may be the key to taking my eyes off of the harsh reality that can sometimes be my life.

So we'll see. Maybe I'll document my happy for you all each day.

If we look around, the world is full of it.

Happy New Year, friends.

Welcome, 2012.

2011 year in review.

2011-12-31T13:27:00.002-06:00

2011 was quite the year in the Larson home. It came like a rushing wind and is leaving like a soft breeze. Wanted to remind myself of the year that changed everything for our family.

January started with a haircut for Nora. Long hair (little girl) turned into short hair (big girl.)

January was also the month that Mabel started in Early Intervention.

February was the last month that we have any photos of Mabel laying on her tummy. Since this month, she has stopped doing this completely.

I officially opened RameeLin Photography Studio in our house! It was a year of blessing for my little business!

March is a memorable month for me because it was the month that I felt sadness take over. Seeing this photo brought to life alot of my fears about Mabel and made me incredibly sad and fearful.

In March, we had Mabel's first EEG that gave us a seizure disorder diagnosis. She started her medicine that same day.

In April, we celebrated Harper's First Birthday!

May came flooding in and we celebrated with summer activities!!!

May was also the month that 'Mabel's Able' was born. Since then, it has become an official not for profit organization and with the fundraisers we have had in 2011, we raised over $3000 for different causes! It has been amazing and inspiring!

In June, we officially started summering! Lots of sun, lots of water, beach trips and more.

Mabel continued in Early Intervention and we saw her grow stronger during the summer months.

July was a huge month for our family!

We held a 4th of July party that included so many of our friends and family.

Mabel had her first birthday!!!

This was also the month we met with the retinal specialist in Chicago regarding Mabel's eyes. We got her 'vision impaired' diagnosis early in the month.

We celebrated the kids' birthdays! Nora turned 5.

And Braden turned 4 (in September...but we celebrated together.)

We met with our genetics team for the first time in the July heat.

August was spectacular in so many ways!

We held our first ever "Mabel's Able 5k Race' and raised about $2000 for research for rare diseases and mito. So many of my friends showed up for us and supported our efforts. This was a turning point for me in alot of my friendships and defined much of the rest of the year in many ways.

In September, we took our annual trip to the pumpkin patch. We watched the seasons change and embraced the cooler weather.

October was surgery month. Mabel had her g-tube placed.

It was a long, hard, exhausting month for our family.

The kids and I buckled down on school work and turned the studio back into a classroom. I officially stopped taking pictures.

We celebrated Halloween with spider man, a giraffe (not dressed up here), snow white and a spider!

In November, we celebrated Thanksgiving at Famous Daves and my 27th birthday.

In December, Mabel got her AFO's.

The kids sang in their very first Christmas program at church!

And we celebrated the birth of Jesus with a great Christmas!

This year I have been to more Dr's appointments than I can count, have lost friends and gained new ones, I have learned more about research and DNA than I ever knew I could, I have wrestled with God and loved Him new, I have made seizure records, and emailed with genetic counselors, I have felt victory and loss.

My marriage has been tested, my hair color has changed almost weekly, our kitchen changed colors as well. We traveled many miles, we embraced change, we felt lonely and we felt surrounded.

2011 was a great year of sadness and frustration for me.

It was a year of growth and solitude.

2011 was a year of quiet and being inside of myself. This year I learned that no matter how much I give to others, they aren't always going to do the same when I need them to--and that's ok.

I have learned that people are good, genuinely and some people aren't good at all.

I have learned that medicine is still far behind and research is lacking.

I have learned that I am capable of teaching my children to read!

I have learned that I am a good mom, even in the chaos.

I have learned that a good cry is greater than a good Dr. Pepper--and that's big of me to say.

I have learned that exercise is far more important than I ever knew and I learned to truly appreciate the gift of breath.

I have learned that the gentle gift of listening is the greatest gift anyone could give and I appreciate those who have listened.

I have learned that prayer is powerful but God is sovereign and I'm better for knowing that.

I have learned what the word GRACE really means and I am so grateful.

2011 was bittersweet for me but I am thankful to see her go.

I am hopeful that 2012 will bring great victory in many areas and even if sadness accompanies it, I now know I am equipped to handle it. I am doing a lot of reflecting today, but then again I have done that every day this year.

Ultimately this is what I can say about this year...

2011 was a year of quiet reflection, strong growth, incredible change, painful reality, and remarkable love.

Here's Hoping that 2012 is that and so much more!!!

♥

Genetics Update.

2011-12-29T09:33:00.000-06:00

We all think that our children are the exception to the rule but I am here to tell you that my Mabel girl truly is the exception.

And in her case, it's disheartening because every one deserves an answer. Everyone deserves a good fight. And Mabel's symptoms just seem to be the exception to a diagnosis at this time. Whether it's another day, another week, another year--for now, we are holding a precious mystery and learning to accept that as it comes.

Genetics called a couple of days ago with the results from a comprehensive mitochondrial DNA test performed on Mabel's muscle biopsy.

As always, we have news but it may be nothing. Or it may be something.

And there's no way to know for sure. And that's about the gist of it. Except that's just not how it should be, ya know? It's just not how it should be.

Basically there is a variable present in every single one of Mabel's mitochondria that is rare.

Ya think?

It is seen in 1 out of every 2700 people in the mitochondria database that was used.

This particular variable was seen in both healthy and unhealthy people in the database so it's really quite hard to determine whether or not this is causing Mabel's symptoms.

There is another option that may help give us some better insight but it weighs heavily on me.

They could test my muscle (because mitochondria are formed in the mother's egg) to see if all of my mitochondria have this same variable. If they do, it is likely that Mabel inherited the variable from me and because I'm healthy--it would be unlikely that this would be causing her symptoms.

However, if I only had a couple of mitochondria affected, or maybe even none--then it would be more clear that hers was not inherited from me and therefore may be spontanious. This would make it more likely that this is causing her symptoms, but not necessarily definitive.

I sat on the floor of my bright green bathroom and I felt my chest draw heavy.

I just knew this was going to happen

"In the future there may be more tests that line up with Mabel's symptoms. As research progresses we will know more and be able to test for things that maybe aren't on the table right now."

And in the meantime?

What if Mabel's symptoms progress faster than research? Faster than medicine?

This is likely, by the way, considering that they haven't come very far.

In all of the case studies that I have researched, there is almost always close to half of the patients who have an unknown or rare variable that they just don't know enough about to help make a diagnosis.

This isn't to say that there aren't other things that we have considered.

Maybe Mabel doesn't have a mitochondrial disorder after all. Maybe we should do the nerve testing. Maybe, we just keep doing what we're doing and hope for the best.

The genetic counselor made it clear to me in the beginning of this that there was no way that they could ever tell us that Mabel does not have a mitochondrial issue. There just isn't enough research to prove or disprove it.

And now, after most of the testing has come back (we're waiting on one more)--she's still telling me that same thing. There's just no way to know for sure.

I know that it may be easy from the outside to look at Mabel and just tell me to enjoy her for all she is. And believe me when I say that I do! But I also feel a sense of urgency when it comes to the health of my baby. My sister and brother may have children.

My children will have children.

We deserve to know for Mabel and they deserve to know for their futures.

We have a baby who, without heavy medication, seizes 85% of the day...

Whose ears are not hearing correctly...

Whose vision is impaired drastically...

Who cannot eat by mouth without choking, gagging, or throwing up most of the time so she is G-tube fed.

We have a baby who cannot even poop without the help of medicine and who has braces on her little legs.

Whose muscles do not have any strength,

Who is allergic to milk, soy and many other things.

And yet there is not enough research to give us an answer as to why?

Why? How? Why?

I'm having a hard time processing some of that and although I'm frustrated and sad in many ways, I knew this was a very real possibility. In fact, I have read so many accounts of children who have unknown mitochondrial disorders, some who have only been diagnosed clinically and some whose parents stopped testing altogether because there just wasn't enough research.

I'm not sure that I'll do the muscle biopsy on myself. At this point, it isn't going to give us a clear answer either way. It may help eliminate some questions but they aren't going to call me and say that this is absolutely causing Mabel's issues. There are some mitochondrial disorders that are easily diagnosed and my heart breaks for the parents of those children.

We are on the other side of that--having no clear answer and that is heartbreaking as well.

Here's what I know for sure--

God has directed our steps this far and He will continue to do so.

As He leads me, I will follow and will never give up until He tells me to do so.

Today isn't the day to give up though.

We're going to take some time to pray and be still.

I've learned that it's ok to be mute with the Lord for awhile and just listen.

We're going to take some time to think things through and love Mabel, stepping away from the game for awhile. There will always be tests to run and things to do.

For the first time in a long time, I feel ok with doing nothing.

Did you know that the Bible says that when we are faithless the Lord remains faithful? It does!

[2 Timothy 2:13]

Right before this verse the Bible also tells us that if we endure pain, we will reign with the Lord. How amazing!

Although it is painful, we will endure it because Mabel is worth it. She's worth finding an answer for as well. We may never know what is causing her symptoms or why things are the way that they are but I am confident that our God will show up in a mighty way for our little girl. He has always proved Himself faithful to us and I haven't lost sight of that-even in the sorrow, confusion and pain.

I'm drawing close to Him today and asking His breath to cover me. What a sweet, gentle breeze it is. What a soft place to fall.

This too shall pass, I believe, but for now this is my journey...my sweet dance with Mabel.

I will forever be grateful for what the Lord is showing me now.

Right here. Right now.

They are answers far more important than any medical test could ever reveal...

anniversary.

2011-12-28T14:47:00.000-06:00

10 years ago I fell in love with a young boy.

He was handsome, yet dangerous. He had a plan for his future and he vowed to fit me into it.

We were 17 years old and head over heels in love with one another.

7 years ago, on this same day--I married that man.

He had followed his dream and I vowed to follow him.

We had a 6 pm ceremony on a Tuesday night and 300 people showed up for us.

Today, 10 years later, I still feel blessed that he chose me.

We fight every day but we love each other deeply, intentionally and fiercely.

We have changed drastically and we make mistakes constantly but we haven't given up yet.

The boy that I fell in love with all of those years ago has changed a million times over. I have seen him to war and home again, through traumas that have altered him, and held him as he cried over his sick child.

I know he looks at me and sees how different I am as well.

Our love looks far different now than what it did. I am attracted to this man in new ways--in all the ways that count. I am frustrated by him, ravaged by him and passionate about him.

But not like I once was.

And yet...it all still feels perfect.

We chose to do life together, not knowing what life would bring us. However, regardless of what life brings us I know we wouldn't change a thing. It's been a great 7 years with many ups and downs but today I am thankful for this man and who he has become--probably more this year than ever.

Happy Anniversary, Babe.

I love you.

hearing follow-up.

2011-12-27T13:33:00.000-06:00

Hope you all had a wonderful Christmas celebrating our King! We sure did, and although I have a million photos to share, they are not currently on this computer. I'll catch you up soon.

Sadly, my Christmas bliss ended abruptly this morning.

I took Mabel for a follow up hearing test. She hasn't had her hearing tested since we confirmed some loss last October. It felt so weird going back to the office today that practically started our journey. Being told that your baby can't hear is a very scary thing but in hindsight it was the most gentle news we heard all year. I was anxious to go back today and see how things had changed...

Unfortunately things haven't changed much. In fact, the sweet audiologist explained that Mabel's ear drums are wiggling, which is a good thing. This means that we know sound can get through. But going further in the testing it appears as if the nerve endings may have some damage that is causing the sounds to muffle or stop when coming back out.

She said that she got a slight reading on the middle tones on one ear but not as good as she would like to see. These are the sounds "e" "o" etc.

The tones that are important for us to hear when it comes to interpreting speech and being able to learn to speak weren't responsive in Mabel's ears--neither of them in fact.

We did two diagnostic tests today and now they are referring us to a pediatric audiologist who will probably want to do a sedated ABR to give us a conclusive diagnosis. At that point they would go forward with hearing aids, if that is something that will be helpful, or any other treatment that may be necessary.

As always, this news is hard to hear yet leaves me hopeful that it is yet another piece to a very important puzzle that is still very much a mystery.

Mabel is still very much vision AND hearing impaired and until today I was hopeful that the latter statement was untrue.

Today I feel like we are back at square one in many ways. The first appointment, one year later.

And this is probably how Mabel's little life will go.

Appointment, follow-up, follow-up, specialists.

One year later and we are continuing in a circle that feels unending.

I never get used to hearing a Dr. deliver news that seems so foreign to my spirit. I never get used to smiling and nodding with a fake smile as if everything is ok or fine. It's isn't.

None of it is or will be.

It's unfair and it makes me so angry--on so many days in so many ways.

Thankfully I serve a God who is big enough. A God who formed Mabel perfectly in my womb and I believe that she is exactly how she was created to be. I know He can handle my fears, sadness and even my anger . so I'm resting in that today. And hoping that He helps reveal our little girl's mystery sooner rather than later.

For today I am thankful to be surrounded by the redheads and my smiling girl.

I am thankful for the promise of this New Year and all it may hold for this family and yours.

2012--what do you hold for me?

Christmas Eve.

2011-12-24T13:35:00.001-06:00

Merry Christmas Eve!

Many of you have seen our Christmas card photo but for those of you who have not, we wanted to share.

We are so looking forward to Christmas in the morning and celebrating the birth of our Savior and King.

Today I am cleaning, we are baking cookies for Santa and getting ready to head to Grandma and Grandpa's for Christmas Eve dinner this evening.

I am still having some weird breathing issues. Although the ER told me that they believed it was anxiety related last week, I wasn't convinced. I went back to my family Dr. this morning and the nurse practitioner said that it could possibly be some inflammation around my lungs. We are going to try a steroid to see if it helps because the anti-anxiety medicine hasn't.

At this point, I'm going crazy just not being able to get a satisfying, feel-good breath.

Hoping to feel better before morning.

Hope your day is filled with the excitement of Christmas and the wonder of miracles.

I know ours is.

From our house to yours--

Merry Christmas with love.

painful thoughts.

2011-12-21T13:14:00.000-06:00

The day before yesterday was a kitchen floor kinda day.

I found myself there--sobbing and shaking--after looking at Mabel and realizing, once again, that I have a child who is not 'typical,' who does have major medical issues and who the Dr's just can't seem to figure out.

She was having a very 'mito' day as we like to call it around here...because once again-even if they can't confirm mito in Mabel, we feel like we can.

She was so tired she didn't crack a smile. She only ate by mouth 3 times and that's because that is all she was awake.

Her cheeks flushed for no reason and she couldn't hold her head up.

...and so neither could I...

Sad. So very sad.

Do you know what's hard?

*When I put Mabel in her swing or bouncy seat and I have to adjust her arms because otherwise she sits like a scarecrow with them straight out.

*When Mabel falls straight to the floor while trying to sit up and laughs about it because she doesn't feel pain.

*When a perfectly put together mom at McDonalds makes the comment under her breath that "That baby is too big to be in that kind of carseat..."

*When Mabel throws up so often and so much that I just sit and watch her until she finishes without moving at all or being alarmed.

*When I read a story to Nora about a bear who cannot hear well and she always chimes in that 'neither can Mabel...' even though I've never told her that.

*When Mabel searches so hard for me, but her little eyes just can't get it together to find me [but she smiles anyway.]

*Knowing that Mabel can't run down the stairs on Christmas morning like any other 18 month old might do. She won't even know it's Christmas. She doesn't even realize what toys are or that she's getting any.

Those moments are hard. And they don't go away even though time passes and the rest of the world resumes. Those things that would sadden any mom's heart, weigh heavily on mine. Some days they hit me harder than others. Some days I can't explain my sadness or my inner grief. I can't and shouldn't have to.

[Special thanks to Rache for just hugging me as you walked through the door and saw me sitting there, expecting nothing from me. You always just let me be. And I appreciate that. You never say "things will be ok." "She's getting better!" "God's handling it..."
Because you know that in the moment I just need you, your hug and the quiet. I love you for it.
You're the greatest friend.]

She's teething so we were up last night at 2:30 am with the first seizures I have seen in almost 2 months. It was pretty devastating but I'm hoping we have seen the last of them for awhile, or at least after her teeth come in. Poor girl.
-----
In other news, Mabel's Able is officially a not for profit organization! We have our own bank account and paypal and it seems very official. It's been a long time getting everything the way we wanted it and needed to have it set up appropriately. It feels amazing! There are already some things brewing for fundraisers to kick off 2012--one of which being a scentsy sale!
Who doesn't love Scentsy?

If you have any other ideas or would like to head up a fundraiser, please let me know. You can email me directly at rameelin @ hotmail dot com
or email us at our official email: mabelsable @ hotmail dot com

Exciting stuff! And I'm so incredibly grateful to all of you who have helped us this year by donating, fundraising and stepping up for us. We love you all for it!
---------
Christmas shopping today with all 3 kids for their dad, Krystal's baby shower and wrapping tomorrow evening, visiting with friends on Friday and then Christmasing all weekend.
Excited it's finally here. Hoping to make the best of it!

weekend recap.

2011-12-19T09:55:00.001-06:00

It has been a good weekend.

Daniel and I had date night which included dinner, sitting in a hot tub and more shopping. We're finished finally.

We had a family Christmas party which was fun and festive.

Yesterday, I got to sleep til noon thanks to Daniel and my mother in law. It was amazing and very much needed. When I woke up, it was time for the kids to nap so we got to watch an entire movie together with only a few interruptions by the boy! It was amazing.

We finished the weekend by taking the kids to the festival of lights an hour away.

[Self: If you are reading this in 2012--DO NOT DO THIS AGAIN!]

Although the kids enjoyed it when we finally got there, it was alot of yelling, pinching, hitting, screaming on the way.

Nora wore the mask the entire time. And then she had to pee so luckily we found a port a potty but otherwise we were trying to get her to wear Harper's diaper--which she wouldn't.

Braden talked in his loudest voice yet about every display we passed.

Harper did the body thrust when we were getting her back into her seat and then did the shrieking cry that is awful.

The light show ended after about 10 minutes and then we had to head back home, but not before Mabel barfed everywhere like the rivers of Babylon.

There's nothing on the radio except for Christmas music which is a little bit contrary to the sound of our voices as we are all yelling at one another in van packed with 4 kids and 3 adults.

Wish we would have had a video camera to capture the Christmas magic but lucky for you--we did not.

I don't know why we insist on doing it every year when we know it's going to be miserable but I suppose it's one of those 'special traditions' that we want our kids to remember. In the meantime, although it was highly memorable (in all the wrong ways), it wasn't quite magical.

------------

Our wiener dog, Heidi, that you've all read so much about, went to live with Jeni.

Jeni's conflicted and doesn't know whether she's now Heidi's mom or her 'Aunt.'

Oh boy.

We have been driving the kids around town to look at Christmas lights every week for the last couple. Last week we spotted a 'Santa pig' and all of it's babies in some one's yard.

The van got completely silent (which was hilarious in itself)...

then Braden says, "Awkward mama pig and her babies."

Priceless.

We also passed a yard that included a lighted gnome that resembled Santa.

Nora was disturbed.

"Um, Santa wears red. What's he doing wearing green?"

Hilarious.

---------------------

Woke up with a stomach and back ache. Think I may have a UTI. Heading to the Dr. this afternoon. Thanks for your prayers.

Mabel went right to sleep last night with no crying. Not sure if the massive puke wore her out or if the melatonin is starting to do it's job. Here's hoping.

Again, thanks for the prayers!!

Happy Monday.

2011-12-17T23:27:00.001-06:00

We started officially Christmas partying today!

It was a fun time. Good food, pretty make up, and Santa.

A woo woo girl dressed in her Santa best. She's delightful.

And we really enjoyed our afternoon together.

We are going to see the Festival of Lights tomorrow night since daddy is home with us!

...and are getting excited for Christmas with my family.

You choose your family, you know?

And Braden and Nora are sure glad to have one another!!!

That's all.

Had a great date night with my guy and am ready to sleep in tomorrow morning.

♥

Hope your weekend is well!

Simple Love.

2011-12-16T13:28:00.000-06:00

Sometimes I forget the simple innocence.

The meek, quiet, ability to love and be loved.

Sometimes I forget the reasons for it all. The magic and the wonder cripples me.

And sometimes I am right where I'm meant to be and I remember...

This. Is. Love.

stanley.

2011-12-15T09:42:00.000-06:00

Many years ago, on this day, my grandparent's lost a son. Their youngest boy; Stanley.

I'm told that he had the kindest heart and a gentle voice.

He was a just a teenager--Jake's age and looked much like Jake.

It was a terrible accident involving snow and a tractor.

Ten days before Christmas and life came to a devastating, unthinkable stop for my grandma and grandpa.

I've heard countless stories about the day. I've heard my dad's reaction from my mom and bits and pieces from grandma.

Just recently, grandpa sat in my living room and made it clear to me (in a loving way) that even when I write these hard and sad things on my blog about all we're going through with Mabel, "I haven't lived the worst."

It was refreshing to hear him say it--because I validate that and it's true.

I fear the worst but I haven't lived it.

And also because I don't know if I've ever heard him acknowledge the pain that Stanley's death must have caused him. How it changed him. Shaped him. Transformed him.

I know Grandpa is reading now [Hi Papa Dan!] and I want you to know that in all the ways that I can understand you better than before, it is now. I haven't grieved the loss of a child and never want to have to endure such tremendous pain, but I have felt my chest turn inside of me in anguish over the unknown and felt sadness that is very real.

It's not the same and I know that. But at this point in my life, I can honestly say that I can look at grandma and grandpa and understand what life must have been like.

Life before Stanley's death and then life after it.

I hugged grandma as she walked out the door that day and she said that it doesnt matter how many years pass, the pain is still wirh her. People don't understand that.

I told her I can understand it.

It's as if time passes and people forget that you have endured (or are going through) something awful. Their lives go on around them and you become an extra in your own life, rather than a main role.

I hurt for Grandma. She raised 3 boys. She was and is a good mom.

I'm not sure, if at the time, she got enough credit for just making it through those days that were the worst of her life. I'm not sure if she had someone to talk to, the way I'm blessed to have. I'm not sure. I hope so. I hope she had people who loved her deeply, wrapped themselves around her and pulled her through that time.

I feel sad for Grandpa. I can't imagine the pain, guilt, grief, frustrations, sadness and utter despair that must have accompanied his years like a full load of luggage strapped to his back at all times.

But what I do know is that they lived through it.

I don't know how they did, but they did.

Despite the emotions and sorrow that filled their days, and changed their lives--they survived.

I image that every year, as the sky grows grey with winter, grandma feels the sting of remembrance. I imagine as the first snow falls, grandpa feels a bit heavier with sadness. These are reminders that come every year of a time when life changed forever and their son went on with Jesus.

What a great hope, however, that they'll be with him again!

A beautiful, clear faced boy that is theirs.

--------

Grandma and Grandpa,

If I haven't said it before I want you to know now--

I am so sorry that this day has to come each year as a reminder of the day that you lost a son. I wish that every other day could be a beautiful reminder of the amazing young life he lived. He was vibrant like Jake, right? If so--he must have been amazing. I think he would have loved Braden.

I want you both to know that as I have watched you over the years I have often wondered what kept the two of you together and so strong. Now I know for certain, because in a very different way I'm experiencing it in my own marriage.

Grandma, no matter how bad things must have been, you had to have looked at grandpa with a knowing. He's the only one that understands the pain. He's the only one who lost a son like you did. He's the only one who was with you in the dark of night and the early morning light that was probably mocking your every moment.

You had one another and that was really all that mattered, because the worst had already happened and the hardest was already endured--together.

That brings me so much comfort. It brings me so much hope.

Daniel and I have 3 beautiful children. None of us know the hour at which the Lord will take any of the people we so desperately love, even if it's a child, and I know that.

This year with Mabel, I have had to research things that all involve very painful scenarios for her life. I think she's going to live and thrive, but none of us know for certain, do we?

But in all of it, I have looked beside me at this man I love and who is Mabel's daddy and I have realized that it doesn't matter what happens. She is mine. She is his. And we will do this thing together, no matter what that means.

I want you to know that I recognize the pain. I understand the amount of work it had to have taken to pull through each day--together. It couldn't have been easy and it probably still is not. But you have helped me to see that it is possible to endure tragedy (of any kind) and come out loving.

Grandma, I know you have a special place for my boy and especially for Jake. I know why and it's ok. I love the way you love them so fervently. Most people don't understand the gift of loving so intimately the way you must understand it.

Grandpa, this year I see that you have come to love Mabel in a sweet, delicate way that is full of hope! Grandma has told me and you have shown me that you are rooting for her every day. Thank you for that, grandpa. Thank you for loving her, believing for her and praying (even if it's silently) for our girl. I love you for it.

I don't ever want you to think that when this day rolls around each year that your baby is not thought about or loved. I think of him every year and wish that I had the chance to sit with him at Christmas dinner and share my life with him.

He lived.

His life was significant and I hope you know that.

He didn't just disappear. His life had meaning and we all think about him.

I love you both. You are so strong and deserve far more credit than you receive. Thank you both for speaking into my life lately and for loving me enough to support me through something that is minuscule in comparison to what you went through all those years ago. Your words and encouragement mean so much to me.

Love you.

rainy day blues.

2011-12-14T11:26:00.000-06:00

I woke up crying this morning. Literally, tears streaming down my face-not wanting to face this day. There's nothing new about today. It's the same day I have every other. It was just a feel-sorry-for-myself, stay in bed, buckle under the covers kind of day. And yet, it never can be because there is life to live. Children to raise, breakfast to make (or doughnuts to give), gtube to clean, vacuuming to be done.

Nora took this photo from my cell phone early this morning. I wake up and take just a few minutes to check my email, facebook, other blogs and such while I eat my cereal and drink my coffee. It's a faithful routine that works well as the kids usually watch cartoons for awhile when they first wake up.

Some days longer than others. Some days I can't get them to sit still at all.

This week has been sort of emotional. There is never one true trigger but as my favorite neuro nurse told me that she's retiring this month, I felt my shoulders slump a little in despair. It was the first time that I realized we are going to lose people along the way [in this journey] that we grow to love and almost depend on. I mean when Mabel turns 3, her therapists, who have become my friends, will just be gone. And what then? I depend on those therapy sessions to pull me through each day and often times, they do. We'll have new people enter our lives and join the team, of course, but it is a sad thought knowing how fleeting each part of our lives truly are.

I talked to God last night on the way to the grocery store. I explained to Him how I felt so out of sorts with Him. I used to think that the more faithful I was, the harder I prayed, the more fervent and desperate my cry was--the greater He would pull through for me. That was my idea of faith.

That has all changed now.

God is sovereign. He wants my obedience but He needs nothing more. He needs no desperate plea. It isn't going to take one good pounding of my fists and stomping my feet in utter despair for it to all turn around. If that's all it took, it would have happened many fits ago.

So my faith has changed.

Now--my faith lies in Him.

...it has nothing to do with me...

Remember how many times I've called myself 'Jacob' throughout this year? I've blogged about Jacob wrestling with God and how I've done the same on more than one occasion. Just recently I finished reading Angie Smith's new book, "What Women Fear." [By the way, if you want a FANTASTIC read--please consider this book! It was life changing for me!]

Anyway, in the book Angie writes a chapter on Jacob as well. What struck me about the whole chapter was her recalling the limp that the Lord left Jacob with, even after He had changed his name to help him remember that he was a new man after he wrestled with God that night. Israel walked away with a limp to remind him of the night he refused to let go of God. God didn't give him a pendant or a medal to remind him. He gave him something permanent.

After reading this, I was able to speak to a dear friend of mine and remind her that even in our struggles, as we wrestle with God, in a sense we should look forward to the limp. Because my wrestling still isn't complete. I am not letting go of God until He fulfills His promises and I know that He may not do that just now--just so I will continue to hold fast. And I'm beginning to be ok with that. But when it's all said and done, I wonder what will God leave me with to remind me of this time when I wrestled with Him and walked away in victory?

My life has been completely altered. This pendant around my neck symbolizes so many personal things for me but most of all, it is the alteration of my spirit.

My love and adoration for a God who has given me a zest for life, despite my sadness and deepest fears. He is still here, faithful and unchanging.

My life has been altered but His plan has not. He has known all along.

There is a great peace buried in that for me.

--------

Every time that I 'limp' in this life, I want to be reminded that God won. After the wrestling, after the questioning, after the pursuing of a God who is personal--

He is still going to win. His will is still above mine.

I want that reminder each and every day, no matter what the cost.

We all need to be reminded, don't you think?

small updates on mabel {no real news.}

2011-12-13T19:52:00.002-06:00

Yesterday Mabel had a routine follow up appointment with her neurologist. As long as she is having seizures and being treated for them we will see Dr. K every three months. While we were there, we talked about her night cry and decided to increase her melatonin amount in the evening. She also told me that some of Mabel's tests from her muscle biopsy were probably in. She assumed that they probably weren't going to call until all of the results came in.

When I got home I decided to email our genetic counselor for an update.

Today she called.

Mabel's blood test for the condition that our friend Ethan has, peroxisomal biogenesis disorder, was normal. Pamela had told me awhile back that she believed the test would be normal, mostly because children with PBD don't usually get teeth as early as Mabel did.

Under a normal microscope, Mabel's muscle looked good. We knew it probably would. Testing for mitochondrial disease is deep and intense. On the surface, it all looks good and normal.

One of the tests that we are still waiting to come in is the electron microscope test and that can take another 4-6 weeks or more. This test will look much deeper into the muscle and hopefully reveal more about what could be happening deep inside our girl.

There are many tests ran on the enzymes in the muscle as they change. Most of the enzymes looked (you guessed it) 'essentially normal' but the respiratory chain muscle and enzyme test was a little "unclear." It did show some mitochondrial proliferation.

In simple terms, as I understand it, that enzyme is making too many mitochondria.

As of now, not many other details were discussed because until we have the 'very comprehensive mitochondrial DNA' test back it is unclear whether this means something or nothing.

I was happy to get some news. But I can't tell you how hard it is to wait, and not know.

Last night was a rough one. Rache and I sat and talked for a couple of hours. I felt connected with God in very deep ways but connected to my sadness even greater.

Our sweet girl...{sigh}

More tomorrow. Sorry for all of the medical talk that most of you won't understand.

I don't even understand most of it myself. But I can't forget it either. I need it to always be here.

Thanks for loving us...

2011-12-13T09:19:00.000-06:00

I heard the sound of tape being torn but I was schooling with Nora and thought it couldn't be so bad, no matter what was going on. A few minutes later after I heard a few aggravated growls coming forth from the bathroom, I snuck in to find him.

A cat.

Harper throws a fit and Mabel lays beside her laughing. And tapping.

That's just how we roll.

Look like mom much?

Apparently we're big fans of love sandwiches around here.

I mean, who wouldn't be when there's so much love to gobble down.

We've still been sneaking in a little bit of Christmas each day. This has been a pretty magical month for us as our elf has been busy hiding in the crevices of our home, and in turn, our heart. It may sound silly but I haven't seen my children so ...well...child like in a long time.

It's the Christmas magic, you see.

We very rarely get out of our PJ's. Sometimes only for a little while to make a quick trip to the store but usually not. Even Mabel's therapists find me in my winter sleep pants and I don't care.

It's cozy. It's safe. All feels well with the world in my striped jammies.

Rache and I spend nights baking and talking. Eating and exercising. Laughing and crying.

We talk about life. Death. Grief. Marriage. Loss. Love. Hope. God.

And our nights turn into days that are passing quickly and faintly-just getting by, but together, and with intention.

It's my intention to write a book some day. It's my intention to be a good mom. It's my intention to never lead everyone to believe that I am perfect or that I have it altogether. Sometimes I make it a point to be over honest so you have no room to believe that our house is booming with fairies and unicorns and constant smiles with Christmas music to cue the goodness.

Sometimes it's slamming on the breaks in the Wal-Mart parking lot and screaming at your kids at the top of your lungs [then feeling so guilty for it afterwards.]

Sometimes it's not Christmas music but the sound of babies screaming, altogether, for an hour straight and two mommies looking at each other, wishing we were in a padded room (just the two of us.)

But then there are times....the times that are brilliant.

The ones where I feel at peace and like I am in the exact right place at the exact right time. When I'm doing homework with Nora and she's learning, when I'm reading to Braden and he's laying his head on my shoulder quietly, when I'm holding Mabel and I can smell her skin and hear her breath and then she turns around to look at me and smiles.

It's when I sit in the middle of the toy room while the kids are calmly playing with play dough at the table and I pour my heart out to my best friend the same way I have for almost a year and she still listens. She cries because she feels the depth of my pain and I do the same in return. It's those moments when the world is right and God is near.

Daddy has been working so much overtime. He is tired but I know he is doing it for us. He hears my worries about money and our future and as a man, he wants to fix it. No amount of money is worth him not being here, though. Soon he will be back to his regular schedule and we are waiting anxiously. He's tired. Would you pray for him?

------------------------------------

And now some funnies from the mouths of my children to make you feel a little better about yourself:

Braden to me in the bathtub: "I can't stand to sit behind your big ol' butt."

*****

Braden to my mom at church: "Nanny, I'm sorry."

She says, "Brother, you don't have to be sorry...you did a great job singing!"

Braden: "No, Nanny. I'm sorry for you. You have old skin."

My mom laughs and asks where at? Braden puts his head in his hands and rolls his eyes up and says, "I just had to tell the truth, Nanny."

*****

Braden in the Christmas parade, riding with my dad in the county truck:

He's yelling "Merry Christmas!!!" loudly to everyone out the window.

Some boy yells at him first as they round a corner and says to Braden, "Merry Christmas to you!"

Braden rolls up with window and says, "I'm done. That's it."

Later he rolls back down the window and starts yelling and waving again. Then he randomly turns to Jeni and says " I am NOT talking to strangers."

*****

When any of the kids say, or do anything that catches us off guard, Rache and I usually say

"uhhh?"

Now, Harper's doing it. And I don't ever wanna forget it. It's priceless.

*****

Christmas is drawing near! What more do you want to accomplish before the big day?

We have made cookies, done gingerbread houses, bought gifts, sipped cocoa and sang Christmas songs. Now we want to see the Festival of Lights and I think we'll feel like we did it all.

Anxious to hear what traditions go on in your world!

whereabouts.

2011-12-11T14:39:00.000-06:00

Today was the Christmas play at church. This photo was from yesterday [when Nora actually went up on stage.] Today she did not. Braden didn't sing loud like I thought he would but he sure wasn't happy that everyone had gotten the song out of rhythm. He's a man of perfection.

Last night I danced with Harper on my shoulders to the sound of {really loud} children's Christmas music in the middle of my kitchen with a whole lot of chaos around me. She laughed and I felt really happy. Lately, her laughter, her fits, her saying 'May-Me"and her expressions are what seem to make me feel most delighted. I think it's the newness of it all and the splendor of her great ability to learn. I took it for granted before with children, but now--to see all she's doing and how hard it truly can be...I am just so blessed to watch her.

Mabel got a new chair. It rocks. {Thanks Pawpy and Eileen!!!}

It fits on a chair, or we can take it with us to a restaurant to fit on top of a high chair. Sitting on the floor, however, is not the greatest plan. We found that out the hard way. Don't ask.

Thankfully our girl was turned back over with a smile on her face.

I got redhead kisses in the middle of my kitchen yesterday.

Yesterday was my most favorite day.

Honestly. We saw Santa. Nora said, "Thanks for this day mommy!"

The house was clean, the kids were quiet, I got to read, I heard from God, I listened to 'sugarland' Christmas and spent the evening as usual. But it was my favorite day. By far.

The girls can be seen Cheesing. Snuggling. Fighting. Crying.

I am not sure I can express how thankful I am that Nora has Harper. She has Mabel, too, of course...but I get to see her play and interact with Harper in a way that is so unique and special. God truly opened up for us a remarkable blessing when He brought her here!!!

I can be seen walking my girl in the late hours of the night. She perches atop my shoulder as she has since day one of her life and she rests there. I feel her breathe. She feels my footsteps. We keep in rhythm with one another and the world is right. She smells delightful and even though her night screaming is torturous to the natural ear, it is ok with me.

She's all mine.

I read to Mabel yesterday as the big kids were napping and the house was still. She lay next to me and I read out loud to her the story of Jesus' birth. I didn't tell anyone else that I did that.

It was a special moment and as she laughed with each word I spoke in a high pitch tone, I looked at her with wonder. Oh so many things I wonder.

But I let the wonder fade and I just read. I'm so thankful I did.

And so it seems that a little bit of madness and a little bit of love make a whole lot of contentment and a smidge of peace. Astounding, right?

That's it for us. Where have you been about?

Dishes.

2011-12-10T18:19:00.002-06:00

I watched her from across the room as her face was glowing and her laughter was contagious. I saw her shiny hair and the way she ran her fingers through it. I looked around and the whole room seemed happy. I'm not sure I'll forget what it felt like to wonder how they could all be so completely joyful.

And I felt the Lord pursue me.

He pursues me with his relentless love and yet I find myself in a dishes predicament.

What I mean is that there are many times when I'm standing at the kitchen sink doing my dishes when my husband walks up behind me and wraps his arms around me. He is pursuing me for a moment of love. And yet, often times I ignore his gesture and continue to scrub away the muck that is before me. It is cathartic to me and it has to be done. Love can wait.

He almost never walks away. He'll stand there, firm, holding me. I find myself frustrated inside, silently begging for him to just leave me to the dirt. I want to scrub and scrub until I can see in my plates and pans the victory of my work.

Yet he pursues me.

Sometimes I don't respond out of sheer laziness. Because if I turn around and respond to my husband's gesture, that takes effort. Effort to open up and accept the love that he's giving, effort to give love back, effort to be vulnerable. Effort to just interact with him.

And most of the time, I am ashamed to say that doing the dishes seems like a lot less work. I can be closed off. I can be quiet. I can be still. I can be inside of myself and not let him in.

Yet he pursues me.

Other times I am not ready. I am not cleaned up. My teeth haven't been brushed and my hair is a mess. I'm cleaning the dishes with my back to the world because I don't feel presentable enough to turn around and face it. I don't feel like turning around, into the arms of my husband and revealing this woman who is bare and unclean.

Yet he pursues me.

So when we were at dinner the other night and I looked around the room, my eyes fixated on the woman with the golden locks of hair. Her smile lit up the room and she was fully enjoying dinner and her conversation. My husband went to the restroom and I sat alone, watching the people around me dance through the night as if it was the most magical experience they have ever had. I felt like a witness to a scene in a movie. I was on the sidelines enjoying the vision yet wondering how everyone could possibly be so happy?
And He began pursuing my thoughts.

Thankfully in the moments of my laziness, disgust, withdraw, and sadness there is a God who still loves me enough to walk up behind me and not walk away. He doesn't care how long I don't face Him. He doesn't care how long I scrub and clean. He doesn't care what I look like, smell like, act like. He just waits; longing for me to turn around and exchange with him a glance of knowing. A moment of utter exhaustion leads to sunken shoulders and a head buried deep in the chest of my lover; my God.

Don't any of them have sick children? Don't they realize that people are suffering, loved ones are dying? Doesn't anyone in this entire restaurant feel outside of themselves? Why is she so happy? Why does her hair have to be so perfect and why on earth does she have to know it in such a way to make me feel even more distant from my own beauty and worth?

And the Lord said this:
It doesn't matter if they have sick children. You do.
It doesn't matter if they are aware of the suffering that goes on. You are.
It doesn't matter if they haven't lost loved ones and this time of year is hard for them. You have.
It doesn't matter that no one else feels the way that you do.
Because I know. I have brought you here. Just sit there and understand that I am here.
I haven't left you. I am not leaving you. I will walk this road with you; in fact I planned it's every turn and hill.
Your hair is beautiful. It's just a different shade of red, much like your life. It's a different shade of your plan. But not of mine. The natural color is what I made it and my only natural plan is still in tact. This is it. You're living it.
And that is beautiful. You're going to be ok.
I'm here with you. I will continue to pursue you.
I love you.

Daniel walked around the corner, returning from the bathroom and as I sat across from him, I realized that I am being pursued by many people. People I have closed off for fear of breaking down and a God who I have wrestled with and have refused to let go of during a time I easily could have. But I also realized that even if I had let go of Him, He wouldn't have left me.

Have you felt this way? I'm willing to bet that you have.
I believe that the Lord is wanting us to put the messy dishes down and turn around. We could never scrub enough to make it all better, or to get them all clean.
Instead we should turn around and fall into the arms of the One who is pursuing you and allow Him to do so.
Maybe even take it one step further and allow yourself the intimacy of engaging with the One in ways that you haven't done in a long time.
He is waiting and He deserves you. For He has been faithful and He has waited.
At least He has for me...

So to the beautiful, smiling, blond haired, youthful looking woman in Olive Garden:
I hope that you are being pursued in such powerful ways by our Lord as I have been.
It may look different for you and that is ok with me [finally.]
I will never forget your laugh.

Happy Birthday babe.

2011-12-09T10:38:00.001-06:00

Happy Birthday to the love of my life {for 10 years this year!!!}

He is 27 today and more attractive to me than ever before.

This man loves God. He loves to play the guitar (but has very little time to do so). He loves working out and lifting weights. He loves nice things.

But above all else, he loves being a dad.

And one of the most sexy things about him is that even if I have to ask, he always helps. He can carry one kid and help another. He has always been here and although it can be so hard with three little ones, we have made it work--and pretty well.

This year Daniel has worked really hard to gain weight. And he met his goal, going from 135 pounds to almost 175! I really am so proud of him He looks great and I know he feels so much better about himself too.

Daniel has been a hero to me this year. His job has allowed him to be at every Dr's appointment, every procedure, every surgery. He has walked with me down hospital hallways without saying a word but knowing. He has felt things that most dads don't have to. I have watched his eyes fill with fear and uncertainty and I have seen him rise above that to comfort me. He has been solid and steady, and although it has not been easy, we have done it together. 26 was a hard year for us and yet we pulled through.

This man of mine is affectionate. He has a deep and caring heart.

He is handsome and works hard. In fact, he's gone from home alot because of his work schedule and especially lately that has been hard for all of us. But we still manage to pull it together and make this family work effectively.

Braden thinks his daddy is handsome and nice.

You can find Nora and her daddy snuggling anytime they find a couch and time.

Us?

We fight. Alot actually. And I'm not sure people would know that about us unless they were told. Because even though we argue and fight passionately, we love and make up passionately [and quickly.] It doesn't matter what the fight is about or how it started, we usually resolve it very quickly and forgive one another too. We're so flawed in so many ways.

But he s here and I am here...and we're just trying to love each other well.

This year, as I stood by him at the race we put together for our Mabel girl, I remember looking over at him and thanking God for this partner. He may not understand all the emotions I'm going through and I may not understand him the right way either. But we can come together and make a great team--and we did. We have built this family and it's not perfect, but it's pretty close.

One more thing about this man. He is a lover. His love doesn't run dry. He doesn't run out of room to love. He loves Harper like she is his. And I'm not just saying that. I am blessed to know a man who loves so selflessly and intimately. He has built a relationship of trust and love with Harper this year that has bonded them in a very unique way. I am so thankful for him and for his unwavering love. He does it without thinking--he just does it. We are so incredibly thankful for the things God did in this home and in all of us this year. I know that one of Daniel's most perfect gifts was seeing Harper everyday!

----------

We had date night last night and went to Olive Garden, Starbucks and Target. It was amazing.

We came home to homemade cards from the kids. This is Braden's. This about sums it up.

Happy Birthday, baby. You are my best friend and I am so thankful for all you do for this family. I hope you have a great day.

PS--It's so unfair that you got snow on YOUR day.

♥