computer=fixed.

The last few days have been some of the best. 

 We have slept late and stayed up later, watered flowers, taken long walks, grilled out, enjoyed our friends, played in the water, sat in the shade, visited the beach, camped out, and have eaten enough smores and ice cream to last us all summer--

And to think it has only just begun.

 Mabel hasn't eaten by mouth in about a week because of her sinus infection and because I've been giving her every ounce in her g-tube I feel like we have accomplished so much nutritionally.  There has been no puking and I'm hoping that we'll some weight gain during this time.  I know I've said it but I will never regret getting a g-tube for our girl.  It has saved her life!

 I'm starting to find that summer with Mabel will prove to be difficult.  And although it makes me extremely guilty to feel this way, sometimes I just want to pack up my healthy kids and enjoy a stress-free day in the sun.  That isn't a reality for me and so we're learning how to manage it all.  For now, even Mabel seems to enjoy the light water sprays at the park.

 In our most recent outings I have noticed how much more comfortable this life has become for me. Now it isn't scary or foreign--it almost feels like all I have ever known.  Feeding my kid through a tube in her tummy in the middle of the park?  No biggie.  Straightening out her crooked fingers or curled-up wrists at a restaurant?  Normal.

Even Daniel said he has noticed how I went from apprehensive to confident in just a short amount of time.  It's our life now.  It all feels so usual. 

I also notice how things that used to bother me are less likely to affect me this year.  All the other 2 year olds splashing and running through the water around me were the last thing on my mind as I held my girl and giggled while she giggled at the feeling of water to her cheeks.  She consumes me and age, although important to most, is just a term in my mind.  She is just Mabel.

No age necessary.

Part of acceptance?  Maybe.  Part of living life fully--most definitely.

Do you know what is really fun at sunset?

Cooking hot dogs over a tiny fire in your backyard with your grandpa.

 Do you know what else is really fun?  Enjoying a private beach for an entire day with just you and your friends.  Frisby, books, floppy hats and sand castles are a must.

 Oh, and shade. 

Shade is a must too-especially for a little girl who can't regulate her own temperature.

She gets oh so hot.

Lucky for us, our private beach came equipped with shade-providing picnic tables.

Score.

 For a week Nora has been begging me to let her bring home a redheaded kittens from Nanny's farm. She is one of 8 kittens, all who were weaned from their mommy and ran off into the wild.

Except her-"fuzzy."

I stuck to my guns and I said a firm NO each time she asked.

"Daddy is allergic to cats, baby...there's just no way he will let us have her."

...And then daddy sees Nora with her and before I know it...

He said yes without skipping a beat and since we brought fuzzy home last night, I have only seen my oldest girl for a few minutes today.  She is in love.

These two, on the other hand, I have seen far too much.  Between the two of them I'm not sure how I'll survive these summer days.

But somehow I know I will.

Crazy.  Loud.  Wild.  Sun kissed.

Music.  Kisses.  Movies.  Books.

Flowers.  Lighting bugs.  Pasta Salad.

This may just be the best summer of my life.

swimsuits && summertime.

Happy Memorial Day.

I'm without a laptop because Nora spilt sprite on our new computer.  The computer that I'm supposed to be using to write a book with.  Instead I've been spending time reading books and it has been cathartic.  In fact, I think I'll stay wrapped tightly in them and escape sometime later this week.  

We have been water parking, camping out, and eating far too many Popsicles.  

All three kids have been sick.  Mabel has had pink eye and a sinus infection.  

My throat is starting to hurt.

Last night Mabel reached up and touched my face for the very first time.  I posted a status about it and got 146 likes.  The amount of support we have is incredible.  

She woke me up in the night and I rocked her, cradled tightly in my arms.  As I looked at our shadows I realized how big she is.  And how long her hair is.  

No wonder people are starting to stare.

The last few days have been good.  

I'm happy.  It's warm and the summer heat is doing us well.

I miss my husband when he's gone and love being with him when he's home.

The house feels crisp and clean.

The kids are mostly hot and dirty.  

It's a good feeling.

I'll update soon.  In the meantime I am soaking in the days.

Swimsuits and Summertime.

♥

Photos from the phone Friday!!

on acceptance.

I used to wear my hair short always.  I wanted it in a 'style' but mostly it made me feel young, spunky, and in control.  It oozed confidence and suited me well.  

A couple of months ago I said to Rache that I finally feel like I can grow my hair long because although I still have those qualities, I also have new ones.

Gentle, much less in control, calm.

I feel like I can blend in with the rest of the world and for the first time in my life be ok with it rather than feeling this strong need to stand out.  

So I'm growing my hair.  And that is why you see me with half a ponytail and a mess on my head. 

Go with it.

-----

It's been a weird week.  A floating through the day kind of week.  I wake up, things are steady and eventually it's bedtime.  I think that 'acceptance' came in at full swing this week as part of my grief because as I lay in bed a few nights ago I realized that I could think about Mabel and the fact that she is undiagnosed without feeling like I wanted to cry.

 Acceptance is a tricky part of grief because it doesn't ever stay.  Or at least it hasn't yet.  It comes in and I feel wonderful and then suddenly reality hits and I remember just how sad I am.  I do feel like the waves are few and far between now and they are far less aggressive.  I have steadied out in my emotions and maybe acceptance seems like something more tangible now.  I feel like I could reach out and grab hold of the peace that simply is.

As I was walking last night, pushing only Mabel in the stroller I felt a huge wind of calm pass over me.  

It's happening.  I'm going to be ok...

no matter what.

And that's a good place to be.

 3 babies lost their lives this week.  And that is just the families that I know of from online.  All had some form of a rare disease, although each were different.  

 Do you know what helps keep me sane most days?

This boy.

 Dancing in his underwear in our front yard (in the middle of town) with tennis shoes and singing "I'm sexy and I know it." 

 ...and then as he sees the pictures as I'm typing this he says, "What am I doing?  This is creepy..."

Totally is dude.

 So many of you have reached out to me with your own struggles.  Your honesty inspires me.  If there was ever something I wanted to accomplish on this blog it was always to stay true to myself and to anyone who was reading.  You help me want to be brave.  

For those of you with your own medical journeys--how can I pray with you?

For those of you with broken marriages,  scattered friendships, strained relationships--hang tough.  

Email me or comment with anything you'd like me to pray about.  I would be honored.

rameelin@hotmail.com

Good Thursday, friends. 

It's about to get hot up in Illinois this weekend.

Break out the sunscreen.

swing.

It seems as if Summer is in full swing at our house.

There are sun-kissed bodies, floppy hats and long bike rides.  

There are cool evenings, sunset walks and twirly dresses.  

 We have cut back on Mabel's therapy-both freeing up time for our family and giving her time to relax.  Her body...as much as it can possibly relax...needs to.

She is still eating really well and it's so much fun to be able to feed her.  Although it is completely disappointing that she isn't gaining.  We have yet to see an endocrinologist so that may be our next step.

 In the meantime, she sure does fool everybody by looking so healthy and beautiful.  

And she's happy.  Like, she is the epitome of happy.

We should all be so joyful.

 In these summer days I am focused, especially lately.

Nora will be going to school in the fall.

Braden will probably be going to preschool for a few days as well.

She and I will have so much time together...

 ...so I'm focused on the bigger kids.

I want them to be little, feel little.  

Be free, feel free.

Wear anything, wear nothing.

Be wild, feel wild.

I'm a little sad about the changes that will be happening.  School, sports, etc. 

It means that these days of little babies, toddlers and children are quickly passing.

I know that I have enjoyed these days the very best I can but I also know I will long for them once they are gone.

For now, I am desperate to watch them, listen to them and be with them.

It is not what I had envisioned or planned, but the Lord's ways are better.  Higher.  Greater than my own.  And for that I am thankful.  

Praying for peace as we make these decisions and then carry them out in our lives.  Thankful to serve a patient and merciful God who knows and loves us deeply.

Possible picnic on this Wednesday.  What plans do you have?