Happy 9th Birthday, Gracie Girl

The last few days were terrible for Gracie.  Since Wednesday evening, she had been in a dark room, eyes covered, miserable, retching and crying from the pain when awake.  Sleep only came from pure exhaustion caused by the former. There was little reprieve during this abdominal migraine and its severity was reminiscent of the ones she had when she was much younger and they were brought on with a vengeance by stress.

Thankfully, the fog lifted little by little on Sunday and, by mid-afternoon, though she wasn't back to her baseline, she let me play dress-up with her for her birthday photo shoot.  (She was exhausted after all the primping, playing and posing and ended up taking a long nap.)  I had hoped to get one great shot to use. Instead, I got so many I couldn't possibly choose. Perhaps it's because she was so sick for so many days that seeing her bright, happy expressive face made me want to use them all. But, I think it's just really because they are that good! ;-)

Sweet, sassy daughter of mine...
How on earth did you get to be nine?

Sitting so pretty

Using her walker, Gracie made her way from sitting on the bed (I liked the colors there!) to her mirror, where she prefers to hang out (stand, sit, stand, let go a bit to test her balance,sit, repeat!).  At the moment I took this pic, she very precariously balanced in the walker without using her hands.

It's hard to see here in the pics, especially with the fluff of her tutu, but she very carefully transitioned herself from her walker to the bar.  These transitions are something we are working very hard on... and she gets more and more daring as she feels comfortable with her position. 

Love this smile... it was missing for several days as she suffered horribly from an abdominal migraine that was, no doubt, worsened (or possibly even brought on) by a stressful day at school on Wednesday.  She was in the dark for days, feeling miserable.  If she was awake, she was crying and retching.  And yet, when that fog of misery lifted, she instantly became her regular happy, playful, busy, lovebug self. 
There is a lot to be learned from that kind of resolve.

I love this so many reasons.
The fact that the puppy is also pictured is special because she was in Gracie's nursery, sitting on her bookcase, for weeks before she was born.

I find these mirror shots to be, well, quite amazing.
Look at Gracie's reflection... so obviously smiling.
Look at the side that is not in the mirror... she appears to be serious.
The lesson... pay close attention... or you might miss what's really going on.

This expression is so quintessentially "Gracie."

Hugging her puppy in one hand, leaning and holding onto the bar with the other.

I love Gracie's hands... they are loving, gentle at times, rough (without intention) many others and
so very expressive.
Whether she uses them to sign or to access augmentative communication devices... they are her voice.

My beautiful, strong, spirited, loving warrior daughter.
She gets knocked down in so many ways, all too often, and manages to pick herself up and keep on going.

(See why I couldn't choose?!)



Dear Gracelyn Marie,

You are nine today. Nine years old. It happened in a blink and yet, it's been a long, winding road to get here.

Your eighth year was full of many ups and downs. Thankfully, with regard to your health, the downs were not nearly as terrible as they were in your seventh year... no major setbacks and no hospitalizations.  That's pretty darn amazing and we are grateful.

The biggest downs were caused by those around you.  You were let down by so many who, by their very role, were supposed to protect you, care for you, nurture you.  Even I let you down by not protecting you better from all of that.  I am trying really hard to let that go, not dwell in a place of guilt, and move on so that I can better protect you and find the right people to surround you.  One such person is Pearl.  We are so blessed, after four other nurses since August, to have found her.   She takes wonderful care of you, advocates for you and, clearly, respects you.  She has, in just a couple of months, learned a great deal of sign and understands so much about how to engage you - - that is a tremendous gift.

Because of the inconsistencies in your care and other things that were happening (or not happening) in your world, it took you a while to trust her... I don't think you believed that she'd stick around or treat you right.  It was so sad for us to see you that way as it went against your very nature.  You are so loving, social and sweet... you are curious about others and don't hesitate to "introduce" yourself in your own way.  And, yet, that social little girl disappeared for a while.   We have been speculating what might have been the cause and now I believe we have finally figured out all the reasons for your hesitancy, sweet girl, and... suffice it to say... problem solved.  I am just so very sorry that it took us so long to put all the pieces together in order to make your world better.  So very sorry. 



For instance, you are literally trying to cross rooms... by walking.  Perhaps some of it is from jealousy (you are furious when our dear friend, Rachel, holds Gavin... you don't want to share her!).  Twice now you have taken a couple of steps between two chairs, allowing yourself to not hold onto something for a brief second as you reach for the support of the chair you're trying to reach.   Granted, how you're feeling plays a huge part in what you do and when you do it, but when you're determined, you can do anything.  Daddy said just the other day, while watching you do some pretty crazy things that prove how incredibly strong you are, "You know, she is going to walk... sooner than we think."  I think he is right.  And, even if he isn't, I will never stop believing that it's possible.   

You continue to astound us with your resolve and spirit.  There isn't a day that you don't have discomfort of some sort... between your central nervous system issues, your joints bothering you, constant issues with nutrition, sinuses and your ears, the list goes on and on... and yet you, Gracie, are never down for good.  The moment that discomfort passes, you have smiles and hugs to give, you are itching to be busy and back outside again.  You are anything but meek, and for that I am grateful.  Your spunk and will serve you well.  You never cease to amaze us with what you can do, what you know and what you can learn... when we least expect it, you remind us.  You are extraordinary and we promise to make sure that you are only surrounded by people who believe that about you and are willing to help you thrive. 

You are, on your ninth birthday, on the brink of so many changes.   I am full of hope that these new doors that are opening will lead to paths that take you great places.  While your journey is never straight and easy, I know that your strength and determination will allow you to reach your fullest potential.   You are our extraordinary, miraculous little girl... and Daddy and I are so honored and privileged to be your parents.

All my love,
Mommy