When you have a child with Spina Bifida, or I imagine any other special need, you need support. People who have been through what you’re going through that can give you advice and comfort you in some of the darker moments. Friends and family go a long, long way, and I wouldn’t have survived the last two years without them. But there are some things that you just can’t get unless you’re walking this path. And as silly as it may seem to a lot of people (my husband, included) you can find a lot of support online.
I have met an amazing group of women on a message board on Baby Center, specifically for parents of children with SB. I’m not on there too often, but when I do head over I am constantly amazed by the care and compassion and dedication they all have to each other, new parents who just got the diagnosis, or people just seeking out advice for their friends or family members.
I know I feel super lucky when a mom or dad who just got the diagnosis finds us. It’s like, God’s own little way of maybe saving a baby. You see, a lot of doctors deliver the diagnosis of SB to expectant parents and advise them to abort. They paint a picture of mental retardation, paralysis and other tidbits of misinformation that would make anyone question what kind of life this child will lead. And while, yes, there are some worst-case scenarios that involve a very low-level of physical and mental functioning, they are few and far between. And even in those worst-case scenarios, who are we to say they wont change the world? That their life isn’t worth it?
Last week, we welcomed an expectant mother who is obviously scared and hurting. My heart is aching for her and her baby, because of what I fear her decision will be. Reason and logic and all the explanations in the world are not working. She is expecting the worst of the worst. And no one can promise her she wont get it.
I am pro-life. I have never been shy about this fact. In my head and in my heart I cannot reconcile how it is okay to take a life just because that life is not yet outside of the womb. But, that’s not what this is about.
Regardless of your stance on abortion or sanctity of life issues, can you disagree that my son is worth it? He is not a burden to me or society. None of our children are. Do they take some extra time and care? Yep, they sure do. Is the world a better place because of them? Without a doubt.
Conservative estimates are that nearly half of all babies with SB are aborted. Some states even have laws allowing very late-term abortions because of diagnoses like SB. The thought of that makes me sick. To think that so many people think that my son did not deserve his life. It’s just…sad.
So, we’re responding the only way we know how. With prayer. Prayer for the parents, the babies and the doctors that are counseling them. So, please join me and over 1,200 1,500 others tomorrow at 12:00pm EST for the Spina Bifida Kids Worldwide Day of Prayer.
Because they are worth it. All of them.