My Biggest Issue

I made an informed decision to never to have children while I still was a child.

I have readdressed the topic several times over the years, each time coming up more certain that it's not only the right choice, but the only one.

I was never really heart set on being a mother, neither one to play house, nor with baby dolls. I was eight when my childhood best friend's baby brother hugged me, and I asked their mother, with what could only be described as complete disgust, "What is it doing?". That said, things change, people change, and I thought some day I might.

By the time I was ten I already was having joint pain daily. I couldn't do things normal kids did, like play on monkey bars, or climb trees because my shoulders would pop out of their sockets. My first major EDS related injury occurred not long after, when one minute I was standing firmly at the top of a flight of stairs, and the next I was at the bottom wondering what happened. I suddenly looked at my mother, who was at the time using a single crutch or a cane to get around, with the sudden knowledge that that would be me. I remember that night, as we sat in the urgent care center, asking if what happened to me was because of the condition we had. She said yes, her mother gave it to her, and she gave it to me. I said to her I wish she hadn't, and she explained that she didn't choose to, it was just a part of my genetics, like my red hair. I decided then and there that I would never have children.

The rub of this disorder lies in the fact that it's an autosomal dominant condition. This means if one person has the gene for it, each child has a 50/50 shot at getting it. I've met so many people with EDS who choose to be optimistic about those odds, especially as it pertains to second or third children. I remember very clearly one woman telling me, with some pride, upon her decision to have a second child that "My first child has it, so my second won't". I literally felt my palm twitch to slap her. I explained that it didn't work like that, that each child she had had a 50/50 shot at it, and it wasn't at all uncommon to see families with 3 or 4 children that all have EDS. At the time I equated it to playing Russian Roulette with a half loaded gun, and refilling the chamber every time a bullet came out.

To this day I still love that analogy, because it so beautifully demonstrates that having children with EDS isn't a game. As I said in my first post, this is a degenerative condition. There is no cure, and no one size fits treatment. Each of us is living with it and suffering from it has varying degrees of issues, and if you look closely at families with it you will notice that with each passing generation the symptoms are generally worse and appear from a younger age. The optimists among us love to think that everything will work out well, but speaking from experience, the odds of deliberately ruining a kids life and condemning them to a debilitating disease for no reason other than the selfishness of wanting a child is not acceptable.

 For a kid with this condition, always in pain, alienated and abandoned by their peers, I guarantee there will come a time where they truly hate and blame the parent who gave this to them, especially if they did so knowingly. My parents didn't know they had it until my mother had already had us, and my father was in a motorcycle accident when I was seven (I will visit my particular pedigree at a later date). When I was thirteen I distinctly remember looking my mother dead in the eye and telling her I hated her for ever having me, because it was her fault I was sick. It was the only time I remember being deliberately cruel, but I absolutely believed everything I was saying. I of course grew out of it. Despite her loving me and my brother absolutely and unconditionally, myself and my mother have said on more than one occasion, had she known, we both agree she should never have had me, for her sake as well as mine.

That is the other side to the EDS baby coin. EDS has so much evidence that it gets worse at every major hormonal shift. There is no bigger shift to a woman than pregnancy, and I have not once in 17 years heard tell of a woman with EDS who was symptomatic and had a baby and ever went back to how she was before. Every one, within a year or two had a sudden decline. Most end up like my mother, with limited mobility of the lower joints, needing crutches, wheel chairs, or other mobility devices. So many cannot care for their beautiful new babies with all their own physical problems. Yet so many choose to, and it baffles me.

There is this strange idea I hear all the time that people who choose to have children are selfless, and those who don't are selfish. I feel that choosing to raise a child is selfless, but that does not mean having one is, especially when one is very probably condemning them to a poor quality of life. I've always seen that people who make the best parents are those who can put the good of children above their own wants and needs, even when those children aren't their own.

I have not completely ruled out becoming a mother in my lifetime, just ruled out having children of my own. I get told by so many people that this is an absolute mistake, that I must have a child to be "complete". I have an IQ of 160, I graduated in the top 2% of my class despite missing at least a third of every school year since I was six, and come from a family with more people with advanced degrees than without. All my great-grandparents lived to over 90, my grandparents appear to be doing the same, and there is no history of cancer, heart disease, or anything other than EDS and it's co-morbid conditions anywhere near my family, but there is nothing special enough about me or my genetics that would outweigh the risks of passing on EDS. If and when the day comes for me to become a mother to feel "complete", I will be thrilled to adopt.

I will never choose to pass this on.

~Heather~