Ten years. A Decade. Wow. In some ways, it seems like we just started on this journey. In others, it seems like this journey has been underway for many more than ten years. Here's looking back to the very start of the journey...
Birth Day. It's amazing how after all this time, I can still remember parts of that day with vivid detail and emotion. I will be the first to tell you that Birth Day isn't always a day filled with happiness. And what starts as happiness can turn to panic, fear, worry, and sadness in a heartbeat. And what should be tears of joy can quickly turn to tears of anguish when your baby is whisked away "for some testing."
Sitting alone in the recovery room, waiting for Ryan to tell all the excited family members in the waiting room, no word yet from the doctor, reeling from a devastating blow that my baby wasn't "normal"...that was a lonely place to be. And I will forever have a place in my heart for Robin, the recovery nurse. She cried with me. She held my hand. And her simple words of "There is no definition of normal" I carry with me still.
When I finally held my baby, my tears of anguish were finally replaced with tears of happiness. Trying to absorb what the doctors were telling us, trying to accept it all for what it was, trying to be okay with things...that was a difficult place to be. But the love I had for this child, whether she was my normal or someone else's normal, was enough to get me through it. She was beautiful to me.
We spent the rest of the day with family and friends meeting her, learning what our future may hold, and just trying to move on. There were pictures, there were tears, there was laughing. Then there was choking. And turning blue. And doctors rushing my sweet baby into the NICU. And our new normal took another turn on the journey.
Craniofacial babies sometimes have trouble eating, we were told. So it was a slow process of teaching her how to eat, and how to eat without aspirating. All the while knowing that if she couldn't get it down, a feeding tube would be in order. Knowing that our new normal was going to be a lot of waiting and seeing how things go.
On Mother's Day, I was released from the hospital. Kennedy was still in the NICU. Talk about gut-wrenching. I sobbed. I retreated to myself. To say the least, that day sucked and will go down in the books as being the worst Mother's Day. But I still have the Mother's Day card that the NICU nurses made for me, framed in my bedroom, so I can remember those feelings. For me, it is important to remember these moments, to remember that things could always be worse.
For several days after, I made the twice a day journey to the NICU, all while trying to recover from a c-section. Poor little Katie was finally allowed in the NICU to see her baby sister whom she has not seen since the day she was born. And after a long week of waiting and seeing, my sweet baby Kennedy was finally allowed to go home. With no feeding tube. Our first small victory.
I won't lie and say it was an easy diagnosis to be handed. Or an easy thing to swallow and move on from. The not knowing what the future would hold made it that much harder. When you take your baby home for the first time, it is all about learning who they are, not sleeping, and changing a bazillion diapers. But we added in a lot of research, making a lot of doctor appointments, and worrying about more than the normal things. Not to mention stares from strangers, some of our friends not knowing what to say or how to handle the situation, and trying to make sure that her big sister was okay with everything. But as it turned out, it was her big sister that taught me how to be okay with it. When I read her story that she shared with her class about Kennedy's birth, including the line "She only has one ear, but that's okay." That's when I knew that it was going to be okay. If an 8 year old could so easily accept this all, then so could I.
Little did we know at that time where this journey would take us. Little did we know what the first ten years of our baby girl's life would bring. We've had ups and downs. We've had ins and outs. We've had happiness and sadness. We've had relaxation and stress. We've cried tears of joy and tears of anguish. We've survived 15 surgeries and multiple hospital stays. We've watched her die once and come close a second time. We've battled chronic illnesses and have even won against some. We've been in and out of more doctor offices than I can even keep track of, some that we love and some that we will never visit again. And although I would do anything to save her from all that she has to go through, I wouldn't trade her for the world.
So on this day, the 8th of May, I wish a Happy 10th Birthday to my spirited, sarcastic, feisty, intelligent, strong, beautiful, blue-eyed, blond-haired hero. May the next ten years be easier on you (and less stressful on me!). And may this journey continue on a good path, providing only hope and promises for a happy, healthy future. Happy Birthday Kennedy Grace. I love you with all of my heart and soul.
