This post will have other posts that follow it, as I come across things that should never be said to a parent (of any child, able or disabled).

Mac, Disabled Child, Spina Bifida
Sometimes I wish I could just give people “the hand” to make them stop talking.

When you become a parent, you tend to get rather defensive about your child. You get sensitive… you develop a chink in your arm that easily catches barbs and words, even though sometimes they’re not meant in a hurtful way. When you have a disabled child, you no longer have a simple chink. You have vital organs exposed for the world to see; and many times intentions, even ones meant in the best of ways, have the ability to wound in a way never believed possible.
I know that people have often said things to me with the absolute best of intentions, but inside, I’m dying, crying, screaming or sometimes dreaming up very slow, painful forms of torture for the person who is speaking to me.
Here are a few examples, along with my inward gut-reactions (yes, I’ve calmed a few of them down), and then things I know are true, even if sometimes I struggle with putting the head/heart knowledge thing into action:

Example: Well, I’m sure it’ll all be alright in the end.
Gut Reaction: Death? Is that what you mean? What kind of a jerk are you?
What I Know: Littlest is whole. Right.Now. He was created wholly as God desired him to be, and only through God’s grace will medical science be able to “change” anything about him.

Example: I know exactly how you feel. (When the person does not, in fact, have a child with a disability.)
Gut Reaction: Whatever the sad circumstances of your life, I don’t think you really do know what it’s like to not hold your child for days after he’s born, to have only been able to touch his foot for 10 minutes before he was taken to a different hospital, and you weren’t able to see him for another 20+ hours. Your cat dying, your labor that was just as painful as mine… those are things I can empathize with you, but they do not give you the “pain” that is the same as a person who has a child who will never walk, a child who will never run, a child with life-threatening conditions that could kill him in the blink of an eye.
What I Know: People have pain. YES. I’m not belittling your pain. I do, however, want you to stop and think about the actual grief the parent of a disabled child goes through everyday. I used to do it too, tell people “I can imagine” when they were in pain. The fact is, unless you have been in that position exactly, you have no idea what it is like. My pain is different from the pain another mother with a SB child faces, but there are huge similarities too. Don’t take this as saying that you shouldn’t commiserate with someone. Just… be aware that they may be in a stage of grief that doesn’t allow them to understand that you’re not belittling their pain.

Example: You’re such a good mom.
Gut Reaction: What, you expected I’d abandon him? Not do everything in my power to help him?
What I Know: This is a tricky one. I *do* understand and appreciate the fact that people are encouraging me on in this path called motherhood. I *do* understand that they’re trying to say “I don’t know how you can be so insert positive trait here.” I’m just sort of unsure how to take this… because every single mom I know who has given birth to or adopted a child with special needs has done everything they can for their children. It’s really no different than parenting an able child. You do the best you can, and it never stops. Just because there are sometimes social mores to challenge, more medical terms to memorize, more Dr. appointments for a child like Littlest, it doesn’t mean he’s really *that* more difficult to parent than the other two. There are things about him that are so much more “easy” than Oldest and Quietest, just like there are differences between those older two.

Example: We’ll love him the same as Oldest and Quietest.
Gut Reaction: Is that even a consideration? Just because he can’t walk, is he any less lovable???
What I Know: It’s hard to approach a child who has a disability. You don’t want to make them feel uncomfortable, you don’t want them to feel less-than. However, this is a huge problem for me. One one side, I want people to be aware of Littlest’s inability to do certain things. On the other hand, I feel like it’s much the same as race: you can’t choose your skin color, neither can you choose whether you’re born with a disability. I want people to see Littlest for HIMSELF first… not for the wheelchair, or the tracheostomy, or the braces, or whatever. Littlest is a person, a whole, complete, perfectly-formed, gorgeous human being who is JUST as weak, JUST as imperfect, JUST as quirky, JUST as messed up as the rest of the world.

Example: If you do X medical treatment, he’ll walk. Y thing has “fixed” Spina Bifida.
Gut Reaction: You have no clue what you’re talking about.
What I Know: Spina Bifida isn’t something that is fixable. The condition is permanent. The symptoms can sometimes become worse without proper care (eg: a lower lesion patient can lose the ability to walk by not utilizing it). However, a child with a mid-level lesion like Littlest, no matter what is done, if the nerves are damaged, the nerves are damaged. If he doesn’t have the nerves to walk, he’ll never walk. He might be able to hobble around on his right leg a little bit. He may be able to have equipment down the road that allows him some form of function above that his body provides… but that is not “fixing” Spina Bifida.

Example: I’m taking X supplement which is “proven” to not allow Spina Bifida to happen. or What did you do to “cause” Littlest’s SB.
Gut Reaction: Again, you have no clue what you’re talking about.
What I Know: There is nothing I did or did not do which resulted in Littlest’s SB. If I tried to find a “cause” (when all the big ones have been checked off as possibilities by experts), I would go insane. The only “cause” I know is that God knew that by allowing Littlest to have SB, He would bring an opportunity like none other into my life. Because He allowed this, I have been blessed in ways I previously never imagined, Littlest has touched lives a child of mine would have never otherwise have touched, and people, redeemed and un-redeemed alike, have given glory to God for things that only He could have pulled off. Glorifying God is a good enough “cause” for me.

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