The title of this post is a quote from Nicholas from last night. Nick needed additional testing because his eye doctor said he could possibly have glaucoma.
I didn’t want another thing for Nick either. At first glance you might think “how unfair” it would be for Nicholas to have glaucoma. Come on, isn’t the leg enough?
I learned long ago that one struggle does not exempt you from another. I wish it did. Fibular Hemimelia is a walk in the park compared to what some people go through. Although its not really a walk in the park.
Most FH families have heard from well meaning people “at least it’s not his brain or heart”. People say those things but it doesn’t make us feel better. Yes we are grateful that our kids don’t have a life threatening condition but so are nearly all patents, I suspect. We may smile and agree but inside we cringe. Or at least I do.
For many kids it is their brain or heart. We are not lucky it’s not those things. Those kids aren’t lucky it’s not some other thing. Birth defects, diseases, mental and physical illnesses are all devastating, in various ways, to various degrees because most of us expect to have a “perfect baby” or a healthy child. I don’t think anyone is prepared to hear that something is “wrong”. There is no way to make light of it. However if parents themselves do, that is their choice or their reaction and I would always honor it. Maybe it can be a way to make yourself feel better. A way to say ‘my kid will be ok’ or part of coming to peace with what is. I do remember thinking it when Nick was a newborn. Just please don’t tell me I am lucky.
If I am lucky Nicholas wasn’t born with a life threatening or life limiting condition, then if you have a child without any condition, you must be so much luckier than me. Really, do people tell parents of children without differences that they are lucky their kids are “normal”. I hate that word but what else is there.
I feel so blessed and maybe I’d even say lucky, to be Nicks mom. No matter what “thing” he’s got going on, he is an amazing son and person in general. I feel blessed to have four amazing children. Maybe that’s where my luck begins and ends. Nothing is worth more. There’s nothing I am or will ever be more grateful for.
At this point Nick does not have glaucoma. He will have to be checked in a year. It is scary to think something else could be “wrong”, that he could have something else to deal with, even though glaucoma is quite treatable. But that’s life. It’s not fair and I suspect it’s not meant to be.
It is, what it is. Which sounds like nothing but its everything. When Nick was scared I said if he had it we would treat it and that would be that. Would it be that simple? I don’t know. What I do know is that if he could handle another thing, even 1/2 as well as he has handled fibular hemimelia, he’d be just fine.