Recently, I have been connected to some blogs about families that have either lost a child or have a child with a severe disability or something of that nature. They really are very sad blogs to read and I wonder why I get sucked into them. But to read of the heartache and the triumphs at the same time and the struggles and the little victories is amazing to me. I get sucked in. 100% sucked in. It wasn't until today that I realized why I am so enamored by these stories. And it's because it could be me. It very easily could have been our life. Writing of the daily struggles, writing of the little victories for a child with a disability.
But it's not. And we count our blessings each day!
We are one of the fortunate ones that are on the "less severe" side of the pendulum for a child with a disability. It's even hard for me to write "child with a disability" because we don't have any glaring signs of a disability. But it's true. Trevor has a disability called Spina Bifida. He will ALWAYS have it. ALWAYS. And some day we will have to explain it to him.
Someone on the outside would never know that Trevor has it. But we know it. We secretly worry when he gets a rash. We question what he was into, what new things did he use or play with. Did he have contact with any latex? We've never had a problem with latex, but it's said that people with spina bifida have a higher likelihood to have latex allergies. So we think about it often and take precautions (although we are pretty relaxed in our efforts most times.) When he says his back hurts or his leg hurts or his side hurts, our minds immediately go to, "is this part of his spina bifida showing signs?" Will we have to deal with a tethered cord in the years coming up? Will we recognize the signs early enough of that tethered cord if it reaps its ugly head?
Who knows.
We are so fortunate. We have a laughing, running, walking without assistance child. He doesn't need a catheter. He doesn't have a shunt in his body like the 80% of others with spina bifida. We've noticed that his lower body is not as flexible as other 5 year olds, but if he didn't have spina bifida we would just say "he's not a very flexible kid". No biggie, right? And he still has some accidents at night. No biggie for any other child at the age of 5. But with him, our minds immediately go to, "is his bladder not strong enough when he's sleeping or does he not feel the sensation of having to go?" We don't know yet, but we think he will be ok. He has so many more dry nights than wet ones so it's just taking him bit longer to get there... but he's getting there.
We really don't know how good we have it. We think we do, and we thank God each time we see Trevor running, playing, jumping, and just being 5, but really, we don't. We don't because we've never experienced that other side of the pendulum. And I think that's why I get sucked into these types of blogs or stories. I know in my heart that we could be there. Why we aren't... I really don't know. But I am thankful that we are not.
Trevor is our more "trying" child. He tries to push the line further and further each day and I won't lie, we get upset with him. He is frustrating some days and he makes us wonder what he's going to be like when he's 7 or 10 or 13. However, on days when I am reading these blogs, I step back and remember that I am thankful, so very very thankful that he is even here with us! He is talking to us. He is doing chores and coming to the dinner table without the use of a walker or leg braces or worse case scenario, a wheel chair. We are fortunate!
So, maybe that's the reason I feel the need to read these stories that others write of their daily lives with a loss or a disability. It's to keep me grounded about where we are and where we could have been had things not gone like they did with Trevor. And it's to remind me that Trevor is our miracle and we should thank the Man Upstairs each and every day that he is running, jumping and moving around, device free.
We are so fortunate.
