Then Comes Baby in a Baby Carriage

The other day I was caught really off guard by a question a woman I was talking to asked me. I can't remember exactly how we started our conversation (I believe we were talking about sports, I'm not really sure), but I do remember that I told her I was never interested in many because of the very likely possibility of overworking myself and overheating because not all of my sweat glands work. Naturally, this lead to her asking why and to me responding, "I have Incontinentia Pigmenti." Once I explained what that meant a bit more, she asked me how one gets such a thing, to which I responded it is an x linked genetic disorder and it is thought that my mom is a carrier. That's when the really surprising question came, the one that kind of shushed me into shock. What does that mean as far as you having children goes?


I'll be honest, I've never really thought about it a whole lot because I don't want to. The genetic disorder I have, it can be pretty lethal in males, so the few times I have thought about the possibility of having children in the future, I've tried to push the idea out of my head. I mean, why should I even be thinking of having children in the first place? I'm only nineteen and me having children is not going to be happening anytime soon. But that still doesn't change the fact that  when I do settle down eventually, the idea of passing on my genes scares the pants off me. Just because I have a mild case doesn't mean they would necessarily have the same luck, and if I do have a boy, what kind of risk would I be putting him at simply by conceiving him? What if having children of my own was too much of a risk for them? Would I be okay with adoption or with an egg donor? Would my husband? How would I feel about not having a child that is not biologically mine? All of these questions from a single inquiry from a woman who was practically a stranger.


In all seriousness though, this is a major concern of mine, as I'm sure it is for many women out there, as well as men. For those whom having a family is very important, the possibility of passing on one's own genes can be terrifying. No one wants to believe that they imparted undesirable qualities on their loved ones, especially their own children. When the day comes that I'm ready to settle down with someone I love and start a family, I hope that I am strong enough to face whatever comes my way, but until I'm older and know more about my own genes and how they might effect others, I just have to focus on keeping myself healthy.

Needles and a Hero

Sorry for my long, unexpected absence, especially since the blog was in it’s infant days. It still is, in fact. So to make up for it, a more personal post…

The thing that was hardest on me as a kid was probably the needles. I hate needles, can’t remember a time when I didn’t. Something about a sharp object penetrating the skin… To me it just seems wrong, even if necessary. Even today I’ll sometimes tear up when I have to get a shot or have my blood drawn, and when I was little I would just flat out bawl. Anyway, when I was younger, in my pre-diagnosis days, coming in contact with needles was a pretty common occurrence for me. Around the age of four or five, I was having blood drawn at least once a week for various blood tests as doctors were trying to figure me out (or at least that’s the way I remember it. I recognize the fact that this might not be realistic possibility depending on the amount of blood that was taken during every session and that the recollections of four year olds aren’t too reliable around fifteen years later, but bear with me). They were ruling things out left and right, but that didn’t quite seem to slow down the rate at which they were testing. All of this was torcher for me, the girl who hated needles. I just wished they would stop whatever it was they were doing and leave me alone so I would be band aid and needle free for an extended period of time. The only pleasant thing that came from this was the bonding time I had with my mom. She knew exactly how much I hated needles, so every time I had to go get my blood drawn, afterwards she would take me to the little gift shop that was a few doors down and buy me a stuffed animal to help me calm down and stop crying. Needless to say her money wasn’t only going towards doctor bills. Even with the gift shop overcharging for TY beanie babies and the fact that there was no real reason for me to be quickly gathering a collection of over one hundred stuffed animals (not all from after shot sessions, but a fair amount of them), she would still always buy me one to make me feel better. I still have every single one of those beanie babies at home, and during those rough times and whenever I’m sick or have to have a shot or something of the sort, I always think back to those stuffed animals and how much my mom cared for me then and always.

This is the Father's Day HERO Bear. I have one just like it at home, and I cuddled it for years. Probably my most loved stuffed animal from my childhood.