This past week I've found and joined into a chat board for Adult Women with spina bifida. I was so thrilled to find it - where were they 3 years ago when I was pregnant and looking for answers? Actually, they were right there all along, but none of my keyword searches got me to their group. At any rate, I'm happy to have found them now, at the Yahoo home page under "Boards" . They seem like a really great group of intelligent women and they have happily welcomed me into their discussions. I even joined in on a live chat with them last Wednesday. It was quite the experience - very fast moving! My husband had to stand over my shoulder for a little while to read what was going on and who was directing what questions to whom so I knew who I should be talking to at any particular point. He even got frustrated with me at a couple points and offered to take over for me - I'd just dictate to him what I wanted to say. But I kept on myself (as this board is for SB women, and he really shouldn't be involved at all) and had a lot of fun. I'm sure I'll get more used to the pace and set-up the more I participate.
Anyway, I've met a few ladies in particular through this board who've written to me about their situations and who have expressed kind words to me about my blog (which I of course told the group about in my introductory message to them). These are women with spina bifida who are currently pregnant and looking for answers to their questions. Even though it's been 3 years since my own pregnancy, it's frustrating to learn from them that there still is not a lot of information available regarding being a parent with spina bifida. These wonderful, interesting women are searching for answers to questions that I myself had a few years back. Will they have to be in wheelchairs full time by the third trimester? Can they deliver vaginally or will they need to have C-sections? How will they handle day-to-day care of an infant when they themselves aren't steady on their feet in the first place?
I'm not at all saying the women who have contacted me, or myself, went into pregnancy blindly, figuring "Oh well, we'll get through this somehow." I'm sure they discussed with their partners and thought about this decision to have children just as much as they were able to before going ahead with their choice. But still, they now want to research as much as possible about what other women like themselves have been through and how they've handled parenthood. And they want to make absolute sure that their doctors are helping, to the best of their abilities, to prepare them for their babys' arrivals.
I see all the work these women are putting into learning about what life is about to hold for them and their new families as very honorable efforts. It is an incredibly self-less, respectable act on behalf of the unborn children to want to make sure you are comfortable providing the best life possible for your child, no matter your own disabilities and/or shortcomings. What a wonderfully loving thing to do.
I'm so proud to be here for these women. I may not be an "official", medically recognized reference for parents with spina bifida, but I am a parent with spina bifida. I also know that there are many diffent levels of SB, all requiring different consideration for various situations. But for my particular situation, I am successful. My daughter is a healthy, happy, intelligent and loving little girl. These are all things that I am able to instill in her regardless of my physical abilities, or lack there of. With the help of my able-bodied husband, and our close-knit group of family and friends, I am successful with my own parenting skills. Just like I know my new friends will be with theirs. Thanks for contacting me, please feel free to post occasional comments for others to learn from/advise upon - and do stay in touch.