What parent of a child with special needs has not had that thought? That our child's disability was because something we did? That you might be being punished for something? That you did something wrong? Did you have a cocktail before you knew you were pregnant? Did you scuba dive? Were you a bad person? You and your spouse fought. You cried when you found out you were pregnant.
When Boo was first in the NICU I wracked my brain trying to come up with some reason why. Every time some new worry arises with her I wonder why she suffers. I still am searching to the ends of Google to find an answer. I have blamed myself for not wanting a second child. I blamed myself for knowing that I probably had a glass (or two) of wine before I knew I pregnant. I blamed David, thinking surely something he must have come into contact with at work did this. This thing that no one could explain to us.
If not one parent has ever had that thought, I call bullshit. Yup, I just swore at you. Because it is impossible for me to believe that when told your child had XQZ you handed out cigars and said how proud you were that your child may have to struggle more than others. That not once did you second guess yourself, your doctor, your medical history or your God. It is easy to blame God for a lot of things. He very rarely comes to the witness stand. He is kind of busy.
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| Photo Credit: Finding Ninee |
He is blamed for war, for famine, why not question him for your child's disability or illness? Or your own. I imagine there are many cancer warriors who wonder why they got sick. What did they do or not do?
In Ms. Braxton's memoir she is recounting her feelings. What she went through as a parent of a newly diagnosed child. I do not agree with everything she states in her book. But am I outraged that she once thought God was punishing her for a decision she made? That she went there and bared her feelings? We might write in our diary, our blog, our book about our feelings and fears. We cry to our friends, our partners and our moms. We go through a period of grief of the child that might have been. That is natural. Am I sometimes fearful that one day Abby or Bridget might read a post I have written and be hurt by it? Of course! But I am also aware that my love for them will overshadow any fears or thoughts I have had, they will read the whole post/entry and not take a line or two out of context.
Did Toni Braxton set autism awareness back a decade with her memoir? Nope. Not buying it. Only if the crazies out there start using it as an anti-abortion statement. I can see it now, don't have an abortion your next child will be punished. Let's face it, there are idiots out there who use whatever sound bite possible to defend their position. Even if there is a thousand reams of information to back up the opposite position. Of course I wish she spent more time talking about how wonderful her son is, how proud she is, how she realizes that autism (or any disability) isn't a punishment. That life with a child with special needs is a life-altering journey.
But it's not my memoir.
Most parents would never, ever, tell her child that she wondered why her child was born with a disability. We tell them that they were born perfect. There is nothing "wrong" with them. We lobby for inclusion. We shout from the rooftops our advocacy.
We believe deep in our hearts that our child is perfect, beautiful, amazing and we are astounded by their will.
But at one moment in time, each and every one of us wondered why "it" happened. Then our hearts grew ten times too large and we stopped wondering and began living.
At least I'm honest enough to admit it.
Special thanks and a shout out to my friend Kristi at Finding Ninee who drew God on the Witness Stand with three hours notice, never asking why I needed it! And to Tia who pre-read this post and encouraged me to post it knowing others may disagree.
Special thanks and a shout out to my friend Kristi at Finding Ninee who drew God on the Witness Stand with three hours notice, never asking why I needed it! And to Tia who pre-read this post and encouraged me to post it knowing others may disagree.
Beautifully written and so honest. My son spent one night in the NICU and my husband and I spoke all of 2 words to eachother until morning when it turned out to be "nothing" serious. Each of us going through our own personal hells wondering what we'd done, what our partners had done, or why God was punishing us. It was an eye opening and life changing experience.
ReplyDeleteI think you have to be THERE in that moment. But once you leave that moment you should never forget it. I think that is what upset me the most. The parents who are bashing a woman for being honest in that moment, that they were never there is ridiculous
DeleteYou said this perfectly Kerri and will say I think as parents in general we blame ourselves for things we did and din't do rationally and irrationally, too. So, on that end, can truly get the point you are making here and yes I too have been there in the past myself with both my girls.
ReplyDeleteThanks, Janine. I agree ALL parents blame ourselves for whatever happens to our children. Too bad we were not better at taking credit for the good things :)
DeleteLike Toni Braxton and you and every other parent of a child born with special needs, I also wondered if it was punishment for something wrong from the past. She shouldn't be castigated for admitting those feelings. Maybe if we all admitted them and then told how God has changed us as parents of kids with special needs, others would begin to see our kids as the blessings they are.
ReplyDeleteJolene...YES!!!! That is perfect. That by being out there with our fears and our joys we are showing others what a blessing our kiddos are.
DeleteBeautifully said, Kerri! I have always been one to let others (even the rich and famous!) "have their feelings."
ReplyDeleteI think that's a natural thought when we first find out that something is wrong. I haven't read the book so I can't really comment on whether or not I think she was wrong for saying that. Maybe people are making a bigger deal out of it than they need to. Lord knows I've certainly whined at and questioned God!
ReplyDeleteThere's no reason for people to be calling her out on this. I know I wondered for days what I had done to cause Owen's Down syndrome. Like you said, we have all wondered the why of our situations and if someone says they haven't, they're lying. It's a human response and she's entitled to it.
ReplyDeleteThis is a really beautiful post, and I love how true and open it is. I applaud you for having the courage to publish it and I appreciate that you did. I love reading this and, while I can't truly relate, I can understand. Thank you, friend!
ReplyDeleteBravo! I agree with you. I remember sitting in church, after we got our autism diagnosis and the priest was preaching about the sins of the fathers being reaped on their children. I got up and walked out. For a long time I was convinced that I did this. I think is human nature (and Catholic guilt) and the fight or flight we go into when something like this happens all played a part. But eventually, I was able to let those feelings go.
ReplyDeleteIn John 9, Jesus says that people have disabilities so the works of God can be shown through them.
ReplyDeleteIt seems these days we aren't very good at hearing people's stories and feelings without believing we have the right to have our say about whether they were right to do so or not. I think I will only truly believe the authenticity of a parent's claims to finding hope, contentment or peace if I first hear their struggles with doubt, grief and confusion.
ReplyDeleteBeing in the UK I missed all the controversy but I'll go out and buy the book now thanks
As for John 9...not sure about that one.