So my boyfriend and I have been on shaky grounds recently, not because the relationship is about to go south. No, instead it is moving forward and we both want it, but it is so unclear as what is too come for the both of us. Dystonia has changed everything.
When he and I first started this relationship I was sure I wanted to end up with him and have his babies, even though I already have babies of my own. Then high blood pressure took hold of my body and didn’t let go no matter how healthy I already lived or how healthy I continued to live there after. For a short period I thought WTF!? Why even make an effort if I have it no matter what I do, and then my little sister who seems to be taller and wiser than me said, “If you weren’t living healthy that high blood pressure could have killed you already”. I saw her perspective of it. I had to agree.
Still, my boyfriend knew if I wasn’t taking my BP medicine that could be dangerous for me and that look in his eyes of wanting to have his own babies with me changed. Then dystonia invade my body and that look in his eyes completely disappeared. He wouldn’t even talk about it or he would just brush me off and say it was too dangerous. And that was that. He didn’t even hear me out. He didn’t even give us a chance to talk to a doctor, but I guess since doctors don’t know jack about dystonia how in the world would they answer our questions about pregnancy and parenting during dystonia.
So, I began to do some research: pregnant with dystonia, pregnant dystonians, having babies with dystonia, is it possible to have a safe pregnancy with dystonia and so on. There is so little information about dystonia its incredible. The information on the internet on dystonia just explains the basics about dystonia, but there is no elaboration, there is no unique case by doctors and their ideas on it. What ever is on the internet about dystonia is created by dystonians themselves, videos, news, articles, blogs, vlogs about dystonia are all created or encouraged by my fellow dystonians and our effort to create dystonia awareness. Thanks to a blog I gained more insight on the affects of dystonia during sex which was a very hard topic to talk about to me at first. Then I got over it.
Thanks to a blog I also had the opportunity to read day by day what a poor woman went through during her pregnancy, the pain, the loss of hope, the hope renewed, the surgery, etc. I showed my boyfriend. I told him about it. I told him it wont be easy, but I told him it might be possible. He still kept pretending he just didn’t want to have kids, but I knew deep down he didn’t want any because he was afraid me or the baby would be hurt and he didn’t want to loose either one of us. He said what if you spasm during pregnancy or stop breathing. I knew then I caught him in his sweet lie and he could no longer deny he wanted a baby.
Earlier this week he said the words out loud, “I want to have a baby with you. I was scared. I am still scared”. He began to list what if scenarios. I began to list some possibilities. We talked a bit. Talked about the timing. We would have to wait at least two years because I was about to begin the OTA program in two weeks. We talked about my age. I am almost 8 years older than him and not to off from 40. We talked about possibly needing to take me off my meds for at least 6 months prior to trying to start making a baby. We both stayed quite for a bit. We knew the dangers that would pose. We need to talk to the doctors I reminded him, but at the same time that came out of my mouth we both knew doctors don’t know what they need to know about dystonia how will they know about pregnancy and dystonia.
Here I am, not to far from 40, about to start a second career, 3 of my own children, a young boyfriend, a body that is falling a part and I just want to cry because I feel like because of me he is missing out on an opportunity to have his own babies. I’ve told him before I would let him go, that I understood if he needed to leave, but he keeps telling me he isn’t going anywhere. He is here to stay and I can’t help want to have a baby with him. FU dystonia! FU!!!!!! We will expose you. We will defeat you!