Although my feelings about Kemper remain the same, peaceful, joyous, and that all will be right as rain, my own fears are gnawing a bit. I suppose part of that is some recent upheaval in what was a very serene setting... my online Spina Bifida Kids group.
I know that some people would choose to abort their baby when faced with a diagnosis like Spina Bifida. I can't say I agree with that, as it was never something we considered for my husband and I, but I am pro-choice and can't be a hypocrite. The thing about this is, a very confused and misguided woman continually asked us over and over about aborting. Everyone on that board chose to keep their baby, there are pictures and personal posts about their children and all the wonderful things they've accomplished. No matter what was said to this woman, she argued statistics on termination, on the burden or sacrifices of caring for a child who has Spina Bifida. It's a personal insult to the women who are proud of their kids to continually argue for termination. She has a decision to make, she doesn't need to justify it to anyone.
Being pregnant with a baby with Spina Bifida too, I tried to be compassionate. Everyone tried to quell her fears with personal stories of their childrens' successes and what wonderful kids they are. She countered that she'd received email from women who wished they'd terminated. She made a poll on the internet so complete strangers could vote for whether she should terminate or not. She lurks the board and jumps in occasionally, and she posts negative things on her blog about our group. I had to stop visiting her blog and chose not to keep up with her, just to pray for her.
Why am I even bringing this up? Well, it made me think about what my family faces... everyone feels entitled not only to their opinions, but to shove them down your throat it seems. I'm afraid of my child being stared at, talked to like he's a thing, or ignored. I'm afraid that we'll go to doctors who will not push for progress but resign my child to wherever he is because he has Spina Bifida. I'm afraid that my temper will get the better of me and I will not be a "good will ambassador" for awareness, but a frothing at the mouth she-devil when faced with a perceived slight on my child. I'm afraid that I will become hyper-sensitive, lose my sense of humor, and go the route of the uber politically correct.
Right now these are my biggest fears. I don't even know what's going to happen with Kemper because every child with Spina Bifida is different. We know he will walk, with or without braces, but that's all that we've been told for sure. I will never view caring for him as a sacrifice or burden. If you feel that way about your kid, it's not because of disabilities, it's because you feel that way about your kid. Whenever someone tells me how hard it's going to be, my blood boils. They don't know that. Will the NICU be hard? Heck yes! Will we get through it? Yes! And anything we have to do to take care of him will just be that, taking care of our baby!
With his delivery being so close, I'm worried about how I'm going to do! That's kind of nuts, isn't it? I know he's going to be fine, I have more faith in that than ever, but I suppose I need to find some faith in myself. That I can be calm, graceful and still get my point across. Wish me luck!
