On Celebrating

Posting this early because I know I won't have time with all her parties/sleep over this weekend...
If you had asked me 10 years ago today what I thought life might be like at this point, it's likely that my response may have been somewhat dismal. I remember sitting in the hospital bed crying after the doctor gave us the news that our beautiful, much-longed-for-and-loved-beyond-measure-before-she-even-arrived daughter had "bilateral choanal atresia." I was so upset that she wasn't healthy. I was so upset because I didn't know if she would make it through that very day. I was so upset because I couldn't even pronounce the darn name of the condition that she had. What kind of mother can't even pronounce the name of her daughter's condition for crying out loud?

After three and a half months in hospital, we came home with the definitive diagnosis of CHARGE syndrome and life with Kennedy outside the hospital began. In those last ten years, she has endured nineteen surgeries, being poked and prodded by so many strange people, having her wee little chest cracked open twice, having so many parts of her tender young body sliced and sewn up again, having to do hour after hour of therapy with so many people. She worked so hard to learn to breathe, talk, hear, see, sit up, stand, walk, and eat with so many systems of her body not working optimally. She had to work so hard to do the things that just come naturally to other children.

This was her reality.

This was her life.

She could've been the grouchiest, crankiest, most horrible child ever and she would've been completely justified in being so. She went through all of this, however, and she thrived. She grew strong, she was happy, she was full of her own little personality, and she gave all of us so much joy. She has gone through more in ten years than most of us will ever go through in a lifetime, and through it all, she radiated, and continues to radiate, this beautiful light of happiness. We should all be so lucky to have a little 'Kennedy' in us.

When I think back to those early days, when I think about all that she has accomplished in spite of what I would consider amazingly unfair odds, when I am sadly reminded of the realities of CHARGE as I was this past week, when another sweet ray of light who was 22 years old with CHARGE passed away unexpectedly, I realize the monumental importance of celebrating this beautiful life. It reminds me that it should not be just on her actual day of birth that I celebrate her, but each and every day that I awaken to the sound of those precious footsteps bounding up the stairs.

I hope the tradition of jumping in bed with Mom and Dad never gets old. I hope the snuggling and the kisses and the squeezy hugs never get tired.

I hope I never forget how lucky I am to have been able to learn so much from this little person and how lucky I am for each day with her.

I love you, Kennedy. Happy 10th birthday, baby girl.





Love,
Mom