Fall

It is finally fall! Typically my favorite season of the year, despite the fact that here in midwest it is especially fleeting. I've been feeling pretty tired lately and am hoping the crisp weather, beautiful trees, and transition from flip-flops to knee-high boots will perk me up (seriously, fall fashion is the best! The sweaters, layers, scarves, boots, hats but without the below-freezing temps).

I had lunch today with a friend who recently had a miscarriage and is facing possible fertility problems. So far she is the only person I've shared this information with who even comes close to understanding what I am going through. It felt so good to be completely honest with someone, especially regarding my fears about IVF, and know that she gets it. It's almost better that we are not connected more closely - there is just so much emotional baggage involved when discussing everything with family.

It is interesting that so far my closest allies in all of this are women facing infertility. I've yet to find someone who is under 30 and doing IVF for disease-prevention purposes. It's very strange to be playing the role of "woman dealing with infertility" despite the fact that we are not technically infertile. As our RE (reproductive endocrinologist) told us, we've always been careful enough with birth control that we don't actually know one way or the other. From his view, if the egg and the sperm have never had a chance to meet, he's in no way going to medically categorize us as "infertile." Can't wait to explain this to the insurance company - yay.

Note: I'm consciously trying to explain or at least spell out as many acronyms as I can. When I first dove into exploring infertility blogs, it was overwhelming how many acronyms were flying around: RE, IVF, PGD, ICSI, etc. --> Confusing!

That being said, I think for a lot of people going through this (women especially), memorizing and understanding all of those letters feels important. When everything else is out of your control, it's at least a tiny bit consoling to have power over all those letters.

buried

I've known I was a carrier since I was 12. So 14 years or so. I've known for so long, that I buried it so deeply that I forgot what it meant. So I was walking around thinking "no worries - you've had years to deal with this - you'll be fine by the time you want kids." But it hasn't been like that at all.

For most of my adult life, I desperately wanted to avoid having kids for other reasons - school, freedom, my career. Now I am ready to have kids, but not really any better prepared to deal with the whole carrier thing than people who just found out. But then, I feel so so lucky to have this knowledge before having a child with this disease. My mom is a carrier but didn't know until we were 8 and 10 (in other words, too late). I am realizing for the first time as I write this how different our perspectives are. I'm sure my mom, and lots of other parents of children with MD, wish they had the benefit of knowledge.

But that whole "it could be worse" way of thinking is cold comfort most of the time. It doesn't make it any easier to see my family, friends and colleagues having healthy children the "normal" way. And it doesn't change how alone I feel dealing with this most of the time. Putting yourself in someone else's shoes is a great intellectual exercise but it doesn't really change the emotional side of the equation.

science

The type of muscular dystrophy we are dealing with is x-linked. This means that if we have a boy (50% chance), there is then another 50% chance that he would have the "bad x." So overall, a 25% chance each time we conceive that the child will have muscular dystrophy. If you have a girl, if she gets the "bad x," instead of actually having muscular dystrophy, she will be a carrier. Essentially, since girls have two x's, the "good x" can cover for the "bad x." So, except in very limited (and much more complicated) circumstances, only boys have muscular dystrophy and girls just have to deal with being carriers.

There are options, roughly the following: No kids, adoption, donor eggs, sperm sorting (gives you a 90% chance of having a girl and thus avoid having the disease manifested), IVF with pre-implantation genetic diagnosis (PGD), or just go for it and pray/keep your fingers crossed.

We are going the IVF with PGD route (I'll let wikipedia fill you in on the details regarding this technology). When faced with the idea that you might not be able to have your own kids, it's hard to explain how desperate you feel, and how quickly you feel that way. Initially, I was so scared of the IVF process that I didn't consider it an option. It still scares me. A lot. But we're doing it anyway because that is what you do when you want something this badly.