Two weekends ago, Nic and I went down to Austin to meet many of the families that helped me through pregnancy. This meet up was important because while no two hydro kiddos are the same, these children were similar to Nicolette in one way or another. A little boy there and Nic shared close to the same head circumference (56cm I believe and Nic's at north was 58cm). A little girl there also has a cyst like Nicolette although the placement is different (posterior as opposed to right smack in the middle). Another child there had hydro to the same severity as Nic though she was birthed much sooner than Nic was (32 weeks as opposed to 37). There was also another little girl that was as sweet as could be. Nic and her share hydro and both have shunts. :)
Friday, I drove to OKC to meet my hydro mom lunch buddy. She travels to Wichita frequently, so it was nice to actually she her home and meet her precious five year old that I had hear and read so much about. Saturday, we drive to Texas (6 hours). Nic did really well and traveled in her car bed. Saturday night was a meet and greet pizza night. It was nice to actually talk to members of this group in person. It was nice to have people hold Nic while I pumped, to eat dinner without worrying about Nic screaming and it getting cold. Sunday was the best pancake breakfast I have ever had, a long talk with one of my favorite hydro mom, a trip to an inclusion, multi sensory playground (you can see in the picture below, Nic is not a huge fan of the great outdoors), and a dinner at a nice steakhouse. Monday, we drove back to OKC, and by Tuesday, Nic and I were home... with a cold that she is still fighting!
While the events in Austin were laid back, the impact was profound. As a parent, I cannot explain the overwhelming feeling of amazement and reassurance. Each parent became my own hero in one way or another. Each child was amazing and a miracle in his or her own way. A nonverbal child signing concern when Nic was crying. A child with a brain so abnormal, neurologist stop and stare for a large part of every appointment drinking everyone's chocolate milk because hey, they are HER cups. When I first met the little boy, he smiled and said, "What's your name?" I told him Nicole. "It's so lovely to meet you Nicole! Can you help me find my chocolate milk?" OR when we were on our way to the restaurant Nic was super hungry. I was pumping in the back when one child asked me what was wrong with the baby. When I said she was hungry, the child looked at me straight in the face and said, "Well, you know what to do!" Yes, yes Parker. I do.
I guess what I'm getting at is through pregnancy I had so much fear. I think anytime a healthcare provider tells you your child will never function like a typical child, you die a little inside. OK, you die a LOT inside. Parenting is met with total fear of the unknown; parenting a child with special needs is met with crippling fear. How will the world except your child if they have a different world of their own? It is terrifying. If you're like me, you research everything. You make the best decisions you can medically and emotionally. You make a schedule and cross every PT's T and dot every medical release form's I. You may even let your marriage fall by the wayside in looks to improving your child's future. You prepare for the worst and hold desperately onto any kind of hope for the future. You move day by day by day, and occasionally, you drive a 3 month old 9 hours to a different state to just sit by people who KNOW what you're going through, people who have been on the same road for much, much longer than you. You look around and see that they are happy, they still have hope. Then slowly, you wake up and realized that you have refilled your hope bucket, and that's enough to carry on, maybe even carry on with a smile.... Here's to you Nic. Here's to you telling people it's so lovely to meet them or to you pulling off the baby's helmet because you what to see it up close, to you drinking everyone's chocolate milk while walking after having 11 brain bleeds, to you sitting in the car and deliver the justice of the must profound logical response. Yes, the future does have light; I can see it as we walk through the tunnel.
