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!
Beth,
ReplyDeleteWe all worry about how the world will treat our little ones. My plan is to build up Maddie everyday, and make her feel like the rockstar she is...So that one day when someone looks at her funny, she can be confident enough to know it doesn't matter. You will be so great at this...and you never know, the delivery and NICU time might be easier than you think. I was pleasantly surprised with mine...and Please don't lose your sense of humor. That would just suck. :)
Selina,
ReplyDeleteThank you for that! Maddie is a rockstar for sure. :) I have to come up with a way to deal with these things too... constructively!
I just stumbled onto your blog through another SB mommy blog. I have a 6 month old boy with SB...saccral, and tiny. No shunt. Your stories sound so familiar! We were terrified when Davis was born, and the first few days and "unknowns" were (are) hard. But, God is good all the time! We are praying for your family and can't wait to "meet" Kemper!
ReplyDeleteFor what it's worth - we've never received anything but love and support for Kingsley. He's only 9 months old, so the obvious SB stuff is only beginning, but I think by the time we cross that bridge I will have all of this time with him under my belt - I'll be better equipped to deal with it. You're so vulnerable when you're pregnant and a brand new mom. Just wait. You'll figure it all out, together. :)
ReplyDeleteStay strong momma! The truth is everyone tells pregnant women how hard it will be, even if they know the baby is perfectly normal. I honestly think some people enjoy the pissing contest. You know, the 'back in my day we walked to school up hill both ways fifteen miles in a snow storm naked' type of deal. I'm glad that you are continuing with a positive mindset, and you are going to be an amazing mother, it shows through in your posts.
ReplyDeleteGod Bless, and it's not as hard as other people make it seem. You're going to be amazing and do amazing, I can't wait to see pictures of your precious baby!
My daughter is such a joy! She is happy, witty and intelligent! We need to instill confidence early. I continually have my daughter repeat, "I am beautiful and I can do anything". She may need to do things a little differently, but I believe that she can be whatever she wants to be. If I believe it, then she will believe it.
ReplyDeletePlus, medical technology is coming along quickly. There is a bright future.
You are already amazing, and you'll see soon enough how amazing your baby will be. Everyone is entitled to their own opinion; I, too, am pro-choice, however, it's not for me. I chose to keep my little angel, and I've never regreted it. You'll be an amazing mother. God bless your and your little miracle.
ReplyDeleteI'm sure you've heard it (a million times), but pregnancy is really the hardest part. In just a couple of weeks you will be holding Kemper in your arms and while yes you will still have fears, you will also have him. And somehow that makes it better. Not that everything is roses, but it certainly helps you to have a good day when you are heading towards a bad day.
ReplyDeleteWe all have faith in you - and sometimes you need to have that faith in yourself. You are doing all the right things!
I appreciate all your positive comments. I've been working through this and I'm feeling like it's just going to be one more thing I learn to deal with and not give much thought.
ReplyDelete