Sunday, June 21, 2015

Father's Day 2015

This Father's Day post is excruciating for me to write. 
In some ways I don't even want the men who I'm celebrating to read it quite yet.
Not yet, guys; maybe not today.  Today may be too hard.
I don't know where to start, which is somehow a first for me. 
I don't where to start except for to say that I have the greatest dad in the world.  And I mean it.  When celebrating strong father's; strong men-he is who I think of.  Today I cried in the Walgreens card aisle because there is just no way to put into words what I feel for him today and every day. 
 My dad is a rock.  He is steady. 
When looking back on my childhood I will remember one thing:  when things got hard in a marriage, our home, or just in life-
My dad stuck it out.
Not everyone can say the same thing.  And yet here I sit with my parents still married and a dad who has carried me, as an adult woman, in more ways than most dad's will ever have to rise up and carry their children. 
 Jeni, Jake and I have always been incredibly lucky for the kind of man our dad is.  He's the kind of man who is known, respected, appreciated.  He is the kind of man in our community whose word means something.  He's the kind of man that my kids will grow up and learn from.  He has strength, fortitude, integrity, valor, loyalty and patience. 
 My dad is also an incredible grandpa and always has been. 
But what kind of card can explain the kind of grandpa; the kind of father my dad chose to be for me in the last 5 years?
On this Father's Day my mind is overwhelmed by my Father in Heaven who has so orchestrated our lives.  I know it is true for more reasons than I'd ever be able to share, based on my faith and on my life experiences.  But I know so also because I have had my earthly father step in and rise up when other father's around me chose to bow out and walk away.  I have seen him take on other men's responsibility in order to see this job as a father through in the right ways; the Godly ways.  My relationship with my dad has been enriched by the loss of other relationships and for that, I am eternally grateful for it all.  Without my dad, these last 5 years would have been impossible to walk.  They would have literally been impossible to live through.
Today, on the first Father's Day without our baby, my heart is broken for my own dad. 
A man who stood at my right side, holding my leg during the birth of my last child. 
My dad was in the room with me when she took her first breath. 
My dad cut her cord. 
I looked at him and breathed a sigh of relief as he kissed my forehead and cried.
A few minutes later I handed her to him for the first time and my heart was never the same. 
And he was in the room with me as she took her last breath. 
I looked at him and breathed a sigh of relief as he kissed my forehead and cried. 
A few minutes later I handed her to him for the last time and my heart will never be the same. 
To say it.  To write it.  To think it and re-think it. 
I'm overwhelmed.
Mostly by the goodness of a God who set my girl into the hands of this loving man from the very beginning.  She was pure from the start; in a way that I hadn't even realized until the finish.  And maybe my dad doesn't realize it either, but on this day I want to remind him:
When our God put her here, He entrusted her to me.  But He did so through you.  You rose up, dad, when He called to you be strength for me.  You were a refuge in my dark days.  I know you'll continue to be.  Thank you just isn't enough. 
You are the greatest poopaw. 
You have never left our side.  Even as she left my arms for Heaven and our weary hearts could hardly survive, you were with me.  You just have never left me. 
Thank you for being the kind of example that Nora and Braden need.
A father and a grandfather who shows up, never leaves, sticks it out, sees it through.   
I am so proud to be your daughter.  So thankful that God chose you for me. 
You're exactly what I need and I hope to be the same for you. 
I love you oh so much, dad. 

This year Mother's Day was so painful for me. 
I knew in my gut that it would be the last I would celebrate with all three of my children on earth.  But I had no idea that I would feel so incredibly tormented over this Father's Day for the men in my life. 
 It's only been three weeks.
I can't imagine waking up today and not being able to hold, smell, and kiss the child that you fathered and took care of for half of her life. 
I quite literally can't fathom it.

But I have watched Chris every day since he walked into our lives in amazement at how he lives and loves.  Not just Mabel, but also Nora and Braden, each uniquely and each just how they need.
Initially I didn't know if I would fall in love again in this lifetime.
I had hoped to. 
I knew that I was deserving and that I had a lot of love that I could give to someone.  But having three small children, being a single homeschooling mom (at the time), and having an extremely disabled, terminally ill child made the criteria for dating me a little less appealing, or so I believed. 
But he didn't. 
Somewhere when I fell in love with him, he fell in love with her.
Their love affair with one another was not only initial but undeniable.  His presence, his energy; everything that I loved, craved and needed-she responded to as well and the two of them, right away became something I haven't ever quite seen before. 
I can't fully explain what was brought into our lives when he entered but what I can say is this:
On this Father's Day I celebrate him.
For loving her in all the ways she deserved to be loved on this earth, and for allowing his heart to be open to whatever life was going to bring, knowing that it would ultimately mean losing her. 

In the last two years of her life, Mabel had the right medications.  The kind that allowed her to really be comfortable.  There were still so many bad days but overall the goal for her life had changed from treatment to comfort and we embraced that.
He got the best half of her life.
And she, by far, got the best of him.
That is a gift I can never repay. 
On the bad days, he held her longer.
His voice calmed her jerking body.
He was patient, loving, gentle. 
He loved her in a way that every child deserves to be loved and demonstrated the kind of fullness that I believe God desires all of us to live out. 
But we are not all capable of that kind of love.  I'm just so thankful he is. 

I struggle so much today knowing what to write and how to word it.
Again, how can I articulate what transpires in our home each day? 
I am just thankful for a man who loves selflessly, teaches endlessly, and is a true partner to me.  In these ways I am grateful that my children will grow up in a home where they see respect, honor, and patience with one another being practiced and truly lived out.  But aside from one another, I pray they'll see it in our parenting of them as well.  And I hope they'll look back and be grateful. 
Nora and Braden have a dad. 
Chris hasn't ever tried to take his place.
He encourages that relationship and fosters the one that he has built with both kids.  It is wholly different and altogether special.  I am thankful and hope one day that the kids will be as well, to have so many people in their lives that love them. 

Today, because there aren't words for the very intimate details that we share about Mabel; her life or her death, I simply just want to say that I have never felt more lucky to know another human, let alone be in love with him.  He is an incredible leader, a protector, a peacekeeper, and ultimately a really great dad. 
He never set out to be one.  It wasn't in his life plan. 
But here they are and here he is and somehow it all makes sense.   

Thank you for loving her when it was hard.  Loving her when it was beautiful. 
Loving her on earth and now in Heaven. 
 Thank you for walking beside me this life; sometimes very twisted up, gritty, and downright hard.  But hand in hand we've been doing it really well and I just know that there are such beautiful days ahead.  I already believe these kids know just how lucky they are but I hope you know how deeply we love you. 
Thank you for surrendering your life to something greater and knowing that through it all, this will be worth it. 
Thank you for your steadiness.  Your patience.  Your faithfulness.  Your honesty.  Your integrity that goes beyond any I have ever seen.  Your laughter.  Your humility.  Your intelligence.
All qualities that I cannot wait for my children to recognize and admire in you the way that I do.
You were a great 'da' to our girl.  I know she's shining down on you today, babe.
Happiest Father's Day to the best man I know.
I love you oh so much. 
To all the fathers, step-fathers, men who share no DNA but share such deep love, grandpas, step-grandpas, 'uncles,' brothers, and mommies who are being daddy's too-
I hope today brings you together with the ones that you love and who are lucky enough to have you.  Or I hope you were celebrated this weekend in the ways you so deserve. 
"The righteous who walks in his integrity—blessed are his children after him!” -- Proverbs 20:7

Friday, June 19, 2015

three weeks.

It's been three weeks.
The days have come and gone strangely.  Time doesn't seem to make sense anymore, which I've been told by several other moms who have lost children is perfectly normal.  It may never make sense again.  How can it feel like she was just here yet it feels as if this new normal without her has happened rapidly.  It's conflicting and hard.  But peaceful and good. 
It's just altogether different. 

In the last 21 days I have done things with Nora and Braden that I haven't been able to do in 5 years.  Not because I didn't want to.  Simply because doing them was not only challenging but a lot of times emotionally taxing on all of us.  I cried hard last week, curled up in my bed.
"I have to re-learn how to mother just these two kids.  How am I going to do that?"

Mabel was part of everything we did, but she made everything we did a little more complex.  It's a strange feeling to jump in the car without equipment, feeding supplies and especially without my drooling girl.  Oh I miss her so. 
Nora is not wanting to be at home much-finding enjoyment with her friends, painting once a week with Harper and William's Grandma Connie, riding horses with Pawpy, and just staying busy.  She's not talking much about her feelings or emotions but is talking often about her sister.  She hopes that Mabel is doing all the things in Heaven that she is doing here on earth; such as horse riding. 
I hope that too. 

Our boy is sure having a harder time.  He's incredibly emotional, impulsive, overly anxious and extremely angry.  His feelings come out in rage.  They manifest very high or very low.  His doctor has seen him, we're on the same page, but managing his emotions with the rest of our home has been a challenge this week especially.  Unlike his sister, he doesn't want to leave the house.  Almost not at all.  He enjoys being with his friends but there are only a select few that he will go spend time with.  We've tried to keep him busy but mostly he wants to be in his room.  He's crying a lot. 
He misses his girl.  

 Both kids have been with us to the cemetery.  Nora wanted to go first and seemed to feel at ease right away at 'Mabel's spot.'  This spot also just happens to be where my Nanny and Uncle are buried.  Nanny and Mabel share a beautiful bench with a beautiful angel atop.  The angel holds a detailed dove in her hands, as she looks toward Heaven and when you walk behind her, you almost gasp at the fact that she's barefoot.  Our girl never wore shoes a day in her life. 
It's literally perfect.   
Braden wasn't quite ready to venture to the cemetery when his sister was but was super brave a few nights later right as it was getting dark.  We got out together.  He walked around, asked me to pray and then told me that he was good and asked if could I leave him alone for a few minutes. 
I did. 
When he returned to the car he blew her a kiss, let out a sigh and said, "Ok.  I feel better now."
 Nora and I have been out together to our garden. 
Uncle Mike and Nora planted tomatoes, onions, peppers, green beans and more in our front yard garden just a couple of days before Mabel died.  I watched from the window as my little girl dug deep in the dirt and planted food that will grow.  Food that will nourish us.  I watched her step across a place in the earth that I knew deep down would become a sanctuary for the two of us. 
And that has certainly already proved to be true. 
A few days ago I found us; she on one end, in the hot hot sun and me on the other, covered by the shade.  We talked some, argued some and were quiet some.  All very typical of our relationship.  Mostly I was grateful that no matter what we were doing, we were doing it together.  I hope that's what she will look back and remember.  She and I and the earth just weeks after her sister died.  We dug deep, pulled weeds at their roots, and locked eyes in love. 
Hard, rugged, mucky love.  
 Late one night this week I lost all control and let myself feel all that I needed to feel. 
That she's really gone. 
And she's really not coming back.
I wanted so badly, in desperation to drive to where her body lays and claw at the ground with my fingernails, all the way to her until she was no longer covered by the earth and her hair rested  across my shoulder once again.  But the truth is, that deep need for her is always going to be just an ache that I cannot quench.  A desire, a need that I cannot fulfill. 
She isn't here.  And she really isn't there.
My girl has been with Jesus for 21 days.  Oh what a joy for her that must be.

There was a loving tribute written about Mabel and I and her life's journey in our local newspaper this week.  It was such an honor to read someone's portrayal of our life together. 
It was ours together, after all. 
She was an extension of me.  She was dependent wholly on me. 
She was my baby.  And the loss of her is so physically repulsive to my being because I'm so used to having her on me at all times.  Literally draped over me. 
Oh I miss the weight of her. 
At the end of the beautiful column written about Mabel's life, the author talked about how I am still mothering two young children and how I know what it means to continue to live for them. 
He is right and so I am trying every day to help them to really do the same. 
Live while missing our girl.  

I see them smiling and I hear their laughter and I am reminded that I must go on.  They deserve the mom that I am.  The kind of mom that Mabel helped shape me to be.  The kind of mom who is present, does not take a moment for granted, and can be fully in this life with them. 
I cannot lie, though, mothering the two of them has always been a challenge and now as the days have passed since their sister left us, it has proved to be no different.  Their moods are unpredictable, their sadness comes rapidly (as does mine) and yet they are really still just trying to be normal kids in the midst of a really not-normal life. 
I'm just so proud of them every single day.  I really can't express it enough. 
So unlike I have read in other instances, time has not stood still for us.  In fact, time has moved very rapidly since the moment Mabel left my arms for Heaven.  Time is a thief in the way that it just never stops moving along.  In so many ways it forces us to do the same and in so many ways it robs me of really important moments that I need to grieve and mourn the way I feel is necessary.  But I can see in the every day moments how we are healing.  How, together, this family is growing and strengthening.  But the in-betweens that people do not see; the every day talks, questions and breakdowns-those are no joke.  Those are intense, intimate parts of this walk that don't get talked about often enough. 
If you will just continue to pray for the kids, I would so appreciate it. 
My grief feels all too familiar.  There's is just beginning and it's a hard thing to walk beside them in, all while doing it myself.  They have incredible therapists and doctors who are helpful in all the right ways but the void just can't ever be filled for them.
It's the most heartbreaking thing I'll ever have to write about, or live through.
In our real life, they lost their sister at the ages of 8 and 7.  Trauma like that is intense for a heart. 
But our God has proven to be so faithful in every single detail and I know He will continue to be throughout their lives as they learn to cope with the reality of being without her. 
Thank you for your unending love and support.  It means more than you'll ever know. 
I am grateful every day for the friendships made here, all while sharing Mabel's extraordinary story of life, hope and Heaven.  What an honor to be her mom {and theirs.}

Friday, June 5, 2015

peace. grief. a week.

One week has passed since I've laid my eyes on her.  I almost can't fathom.  For nearly five years this little girl was draped over me like a beautiful, vibrant, comforting quilt.  And now, in her place, simply peace. 
So far my friend grief has stayed at a distance.  I can feel him looming; watching.  Waiting for the perfect time when just he and I can be alone with one another.  I met eyes with him early one morning this week and late last night.  But he has been polite.  Typically he is not.  I am grateful that instead of being invasive during this time he has allowed peace to hold me as I crawl out of bed or look into the mirror.  Her arms feel far more like home.  Though, they're both familiar. 
Grief and peace.
The two things that are wholly mine.
I recognize them.  I find comfort in both of them. 
I have learned to rest in peace and rest in grief.
Play in peace and play in grief.
Smile in peace and smile in grief.
Mourn in peace and mourn in grief.
Many don't realize that the two can coexist.  I feel them almost interacting with one another to complete this entity inside of me that is greater than my own breath.  They're palpable.  They're nurturing.  They're healing.
Grief.  And Peace.
One week ago today my girl met Jesus. 
Oh to know she's resting. 
There's nothing quite like the joy that has overtaken my spirit for my baby. 
She endured more than any one person should ever have to endure. 
I knew the moment I first looked at her sweet face that she was not created for here.  She was meant for so much more.  I was honored to be her mom every single day.  She made me a better human.
Every day I miss her.  The ache is so large I can't quite explain.
But every day I am thankful for the intimate life we shared; she and I, almost as one. 
She will always be my baby and the hero of my heart.

Tuesday, June 2, 2015

Mabel Audrine 2010-2015

Early morning, Friday May 29th, Mabel Audrine peacefully left my arms on this earth for the arms of her Maker in paradise.  Our hope of Heaven has provided us a deep peace and we are grateful for the undending rest that Mabel has received and wholly deserves.  Because of her pure heart, Mabel knew the way to the place Jesus has promised for all of us and we are confident that her life and legacy will leave all who knew her with a great assurance of a beautiful, spotless eternal home.  A place where our girl now lives, free of her disease. 
"And if I go and prepare a place for you, I will come back and take you to be with me that you may also be where I am.  You know the way to the place where I am going."
-John 14:4
We want to thank you for your love, kindness, prayers and condolences over the last couple of days.  Many have asked about services for our girl.  Our family privately laid her to rest Friday evening in the most intimate way with her siblings and her tiny friends releasing yellow balloons in her honor.  We know many of you want to show your love and support to our family.  Please consider honoring Mabel by making a memorial donation to the bdsra in her name. 
At this time please continue to respect our privacy; we have felt nothing but peace in the quiet with one another. 

Sunday, May 17, 2015

life puke.

The weeks seem to become more of a blur. 
Spring has arrived, the trees are in bloom, the tulips have already appeared and withered away.  It's hot; humid, stuffy.  The kids are anxious for school to be out for summer while I'm a little more nervous about what the days with them will look like.  I'm excited to have them home and hope we have the chance to make some really great memories here.  It's just that the happy high I was on for quite awhile has faded and the heavy grief has swooped back in.  And not just for me, I see it in them too.  The worry and wonder.  It's our life so I think it goes unsaid often, but we all feel it. 
The kids attempted the carnival yesterday.  Braden puked and Nora was on the verge.  I had to laugh because that seems so very typical of how our life is.  The fun and excitement of something lasts for a time before we all get hit with the twirling, dizzy reality and we find ourselves at one point or another standing around on hot pavement barfing.  I couldn't help but watch them literally puking and think of the irony; the figurative spilling our guts out over life's wicked ride. 
This week has been another really tough week for me.  Better in some ways, harder in others.  It took a long time for me to finally write it when Mabel stopped sucking and taking a bottle because I knew in my heart what changes were to follow.  Now I'm here, just weeks into those changes and it's still overly difficult every single day to face the new reality we are in.  I look back and I almost can't wrap my mind around the fact that my once healthy-looking baby is so very sick.  But then I have to try and comprehend that even when she was healthy looking (and in a lot of ways acting), I knew she was this sick.  It's a lot to wrestle with. 
[photos from 3 years ago]

So where are we now?
Well the changes are drastic. 
Mabel's tummy isn't absorbing her food properly.  She went from eating 8 ounces, 5 times a day to eating 5 ounces, 3 times a day.  Essentially she cut her feeds in half.  And now, of the 15-20 ounces a day that she is getting, she is only absorbing about 9-10 ounces of that.  She isn't absorbing her meds properly from what we can tell and she has now vomited several times in the past week which she hasn't done in well over a year.  

Her body that was once so jerky and agitated has stilled.  For the most part her body is very calm, without medication, which is a strange thing to experience.  For almost 5 years I have watched in horror as her body has twitched and jerked and then suddenly, nothing.  I think back to the batten disease conference that we attended last summer and asking several parents what medications their children were taking to make them be so relaxed and when they answered, 'nothing,' I was almost horrified.  It was helpless for me knowing that no medication had helped Mabel and yet these kids were still on their own.  What was I going to do? 
Most of the parents remembered a time when their child had jerked in those ways but said that at some point they just stopped.  It was a phase that they no longer really remembered, thankfully.
In that way, I think my prayer for mercy has been answered but I almost hate to speak too soon.  She has still been agitated as far as crying goes but a new medicine seems to be helping some, though it takes hours to kick-in when truly, it shouldn't.  I've got the timing down now so by noon each day we are in a little bit better way.  A couple hours of screaming compared to twelve is truly nothing at this point. 
Last night after the house was quiet and I was just up alone with my thoughts, I snuck in her room to check on her.  Typically I try not to do this as to not wake her but she had puked before bed and I wanted to be sure she was propped up and safe.  Her color had me worried and I checked her respirations.  She stirred just slightly, but with a smile.  I climbed up in bed beside her and put my ear to her little chest and laid for a long time and wept over my baby.  I felt her start tapping and heard her giggle as I cried.  Normally I'd be so careful not to wake her but in these last few weeks I'm just so thankful to see her awake at any chance I can get because for me there is an urgency to see her eyes as often as possible.  I held her for a very long time, wiping my own tears and her saliva.  She turned her head gently to one side and her heavy lids consumed her.  As I watched her sleep, I silently thanked God for her.  All of her. 
And all of this.

Every day that she wakes is a really great day. 
Though they are only going to get harder, they are still incredible.  I am locked in and really ready for the road ahead but it sure doesn't come without total consumption. 
My body literally aches from the sadness and exhaustion.  It is difficult to eat, difficult to sleep.  The emotional energy that I've worked so hard to store up for such a time as this is being spent rapidly.  But I'm amazed at the grace that is poured out over me each morning. 
God is really faithful in carrying me through each day.  And He shows up even when I'm cussing him on a country road all alone.  He shows up in my anger and frustration, in my filthy, self-consumed sadness.  He shows up in my belief or doubt.  He shows up and brings a peace I can't explain. 
It's all over her and I pray, all over me. 
Because death is part of life and the journey toward Heaven can be beautiful.  The suffering that I have watched her endure is nothing compared to the joy that she will one day experience. I think she knows that as much as I do.  I pray I can be as strong in these comings days, weeks, months, or years that she is with us as she has been all along.  She inspires me every day, without even trying. 
Thank you to everyone who is reaching out to me. 
Your texts, cards, calls--I so appreciate them. 
I'm a little inside of myself lately and I am grateful that you're patient and that you understand.  I am thankful that you're faithful to love me through it and see me on the other side of it all.  That is the most profound proof of love and I'm so lucky to have such amazing friends, near and far.