An Amazing Journey.

My dear baby girl {who still does not have her own nickname – but we’re workin’ on it!}.

I have thought about this letter for a few days now. There’s so much I want to say to you, so much about this second year of your life that I want to sum up for you so that someday you know just how very amazing you are – and yet words fail me. I cannot possibly do this year adequate justice.

How far you have come from that baby who had JUST learned how to sit up on her own –

to the crazy-yelling, walking/flailing, ball of hyperactive energy that you can be today.

How much you have struggled through 6 hospitalizations –

but always come out smiling and happy in spite of how sick you might feel.

How hard you work every single week to learn the simplest task –

and how very much we all cheer you on when you meet that inchstone.

This year has brought us closer to answers for you, for the mystery that IS you.

While mitochondrial disease had been on everyone’s “short list” of possible diagnoses for a long time, there was {and I guess in some ways, still is} the hope that maybe we would find something different. Something we can fix, something that will magically disappear if we click our heels three times and say there’s no place like home. So no one would commit those words to paper – at least not any papers that they ever let me see. But I’d see them, here and there, in parts of her chart left on the desk, or in paperwork to sign for insurance authorizations.

And I guess that’s why we flew to Pittsburgh to meet Dr. G – remember your first plane ride? No…you probably don’t. But I took pictures for you – so you could pretend someday like you DID actually remember it. Because I’ll never forget it. She walked into our room with a stack three inches thick of all your labs and paperwork and her own reports and questions and she told us that if we didn’t start addressing some of your “issues” quicker that we would be trying to make up a lot of ground in time that we might not have. So a week later we drove back. And you were such an amazing little trooper through dozens of IV pokes, blood draws, test after test, consult after consult, procedure after procedure. All designed to look at the many pieces of you, to try to put you back together again as one whole little person. Your very own real life humpty dumpty.

But in the end – the answers were still the same that we had suspected. Your mitochondria malfunction. They are missing a sheet or maybe 5 of vital “instructions” on how to properly metabolize food and oxygen and make it into energy. So your lungs don’t have enough energy and your gut doesn’t have enough energy and your muscles don’t have enough energy and your immune system doesn’t have enough energy and your body has learned how to rob peter to pay paul, except sometimes even peter is standing in line down at the check cashing joint on a saturday nite taking out a 68% interest loan on sub-par energy.

At least – that’s how I understand it.

Heck – who really knows, kiddo? I have gained a medical education that I never knew I wanted, or that I was even capable of learning in the past two years. I can interpret your lab results quicker than most ER docs (although they REALLY don’t take too kindly to this I’ve learned!), and I can actually spell most of the words that docs just scribble off  {h-y-p-o-g-a-m-m-a-g-l-o-b-u-l-i-n-e-m-i-a}, and mostly I have learned that God gave me this loud obnoxious voice and slightly rebellious attitude for a reason – and that is to fight for you.

When you are in pain – I want you to know that I will always be fighting to get you relief.

When you have already endured the frustrations of trying all of the idiotic suggestions that Dr. Doogie Howser’s brother who just graduated med school last week wants to try before actually doing something WORTHY of his degree – I want you to know that I will be fighting him suggesting actual helpful measures to get you better quicker.

And when ANYONE tries to tell me how to take care of you –

you who I have held to my chest and paced with so many long hours in hospital rooms, bedrooms, hallways, waiting rooms,

you whose crazily messed up body systems I can read like bobby fisher could read a chess board,

you whose milestones and inchstones and achievements I have worked for painstakingly day in and day out and rejoiced over

-know that I will ALWAYS be the one to tell them that they may be a world-renowned expert in “fill in the blank with hoity toity medical subspecialty here”,

but that *I* am the expert on Kendall Quinn Atkinson and *I* will be the one making sure that she continues to succeed in every aspect of life.  My love for you Kendall is such a fierce and driving love that it is hard to even attempt to put it into words. All mothers love their babies and have the ability to turn into “momma bear” when faced with circumstances like what you and I walk through. But you and I, we’ve had to endure lots of those momma bear conversations over the past two years.

And I look forward to many more.

You will continue to keep us all on our toes, k4, of that I am sure. I cannot wait to see how your relationship with your sisters continues to develop, and also to see how they all continue to relate to you in their own individual nature: Kealey who considers herself a second mother to you, Karissa who sometimes still acts surprised at your presence, Kaylen who drags you around and tells you what to do and how to act as if you were one of her precious dolls. It’s definitely going to be a huge year. I do not know how many of the days ahead might be spent in doctor’s offices or hospitals. I do not know if you will gain even more attachments and interventions and medications this year, or if you will be able to shed a few. I can guess that it will probably be a mixture of all of the above if its anything like your first two years – and that’s ok. Because this is just part of who YOU are, and part of what WE do as your family.

Thank you for all you have taught me over the past year.

Thank you for your strength and for fighting even when I know you were tired.

Thank you for the “kisses” you have recently learned to give.

Thank you for picking me to be your mommy.

 

I love you with my whole heart~

mommyA