When Kumaka was diagnosed with Spina Bifida, it was like a train ran me over. I was so scared that he would have a terrible quality of life, that he would be in and out of the hospital, that he would have tons of surgeries, and that he would be in a wheelchair.
Now that Kumaka is almost six years old, I look back at those terrified moments and realize that all of my fears were unfounded. Because although Kumaka has indeed had numerous surgeries, he's been in the hospital so many times I've lost count, and he is in fact a full time wheeler, that is not indicative of his quality of life. Why? Because not one of those doctors were able to tell me about HIM. His bravery...courage....steadfastness. Kumaka is seriously a rock star. He's my hero.
Yesterday was one of the worst Spina Bifida days I've had since Kumaka had twelve hour hip surgery in February. Now that he is older, Kumaka is also wiser. I told him we had to go to the hospital because he had a surgical site infection of some sort. We needed to determine what type of infection and how to treat it. I was a little scared, the word infection is scary to any person who has any hardware in their body. And because Kumaka had redness at his surgery site, I was terrified his infection would be in the hip hardware. I was trying to be strong for him as inside I was completely shutting down when all of a sudden my boy LOST it. He started freaking out. He did NOT want to go to the hospital, he did NOT want a shot, he did NOT want to go. He was crying and crying and crying and my heart shattered into a million pieces. As I drove, I tried to soothe him but there was nothing that was going to make him feel better. This has never happened, and this boy has been through the wringer. Finally, there was quiet and I realized he fell asleep on the way to the hospital. When I took him out, he resumed crying, and cried all the way into the room. He calmed a bit as we watched Peter Pan....but the minute the nurse came in, he LOST it. He cried and he moved his body as far away from the nurse as possible. And because he was so upset, the nurse brought in a tech, which made it worse. If I could take all of it from him, I would have. If I could make Spina Bifida go away with a snap, I would have. I felt helpless, useless, and totally unable to soothe my baby. My heart was aching.
And then....he snapped out of it. Once the blood was taken and the IV placed, he was FINE. He played, he laughed and joked, he ate his dinner, he was ......Heroic. I don't know any other word....as I watched him sitting in that bed, playing legos, and telling me stories, and laughing at silly things. My mind was completely blown....and I realized that no matter how many times I am sad my son has been dealt this hand.....he reminds me that it is only a small piece of WHO HE IS...and he does not allow it to rule his life. He is creative with his casts, he flirts with the nurses, and he charms his doctors.....(even the surgeons). He is fiercely independent, and he does not let anyone tell him he can't do something. Yesterday....he even read his very first word on the computer. And it wasn't even a three letter word...it was a four letter word. He's an overachiever! And...he loves to PLAY (the word he read on the computer at Choc clinic).
I'm sure I will have more scared moments.....but I know that they will be short lived. So thankful for my boy...