Jumbled Up Thoughts on the Gift and Grief of Disability

I’ve been wanting to say something about disability and abortion, in light of the anniversary of Roe v. Wade, but haven’t been able to put it together.

I think my pastor summed up the scattered thoughts I’ve had when he said something to the effect of, “When someone discovers their unborn child is disabled, it’s the one time abortion isn’t just a choice, it’s considered by many, the right thing to do.” That’s not a direct quote–it’s probably not even close–but I think it represents the gist.

Disabled kids are just plain de-valued, both in the womb and out of it. Most pro-choicers view abortion as a necessary tragedy. One helpless life is being sacrificed at the hands of a bigger, stronger person. It’s a horror and I think most people’s consciences are at least pricked by it. But many people view the abortion of a disabled child as a kindness to the person they’re killing. They think it’s better for the disabled person to die than live–that their quality of life wouldn’t be worth the effort.

I don’t have anything new or insightful to say about it except, it’s a big fat lie. Disabled people are made in God’s image. It’s not OK to kill disabled people in the womb or any where else. I call them people. Children. Babies. Human Beings. They are NOT vegetables. Not less important than your dog. Or a whale. Or the environment.

The truth is even cognitively impaired, non-responsive people without voluntary movements or the ability to communicate represent to us people of mystery at the very least. No one can pretend to know the extent of their understanding or love or responsiveness. Why? Because they can’t tell us. (Except this man can: Ghost Boy.)

Disabled people are a gift.

Having a son with an abnormal brain has only convinced me further that every human is made in God’s image. We have more to learn from the disabled among us than could be imagined–especially the cognitively disabled.

So, if disabled people are gift (and they are), if their lives represent something incredibly important for us as the body of Christ, why this nagging grief? Why not just celebration? That’s been knocking around in my head for a while.

I think it’s because we want for our children the same joys that we’ve experienced. We want them to know things in the way we know them. We want to protect them from sin and there is deep grief in realizing that sin has had it’s impact from the moment of conception, in cases of congenital disability. It’s sad. It should be sad. It is not easy or simple to show people the simultaneous sadness and celebration–not because it’s too hard to understand, but because it’s hard to live.

Disability brings with it little and big griefs and little and big joys. Even the happiest times can be tinged with some heartache. Our Titus is doing so well the last 3 months. This has been a time of celebration. And I want to declare, “We will now return to our regularly scheduled programming!” I want to do everything to make life as “normal” as possible. At times, it seems like I’m really succeeding. Until I find myself learning how to remove a button from my son’s stomach and replace it by inserting a deflated balloon through the stomach wall and then inflate it to hold the button secure. Something about that just isn’t normal, no matter how much we get used to it.

wpid-g-tube.jpg

I sat in Titus’s neurologist’s office last week, eager to be told that my baby boy is somehow better, that his problems are mostly gone, that the MRI’s findings were a bad dream. Instead he carefully reminded me, “He’s doing wonderfully, but you’ve got to remember that he does have something really significant going on in his brain. He’s not out of the woods.” Why does that sting so badly, if disability is a gift? Because it’s a loss, that’s why.

How can something be a loss and a gain? How can disabled people be so essential to our understanding of God and love and each other and also be a reminder of the incredible loss that sin has wrought? This truth has been helping me see it:

“For I consider that the sufferings of this present time are not worth comparing with the glory that is to be revealed to us. For the creation waits with eager longing for the revealing of the sons of God. For the creation was subjected to futility, not willingly, but because of him who subjected it, in hope that the creation itself will be set free from its bondage to corruption and obtain the freedom of the glory of the children of God. For we know that the whole creation has been groaning together in the pains of childbirth until now. And not only the creation, but we ourselves, who have the firstfruits of the Spirit, groan inwardly as we wait eagerly for adoption as sons, the redemption of our bodies. For in this hope we were saved. Now hope that is seen is not hope. For who hopes for what he sees? But if we hope for what we do not see, we wait for it with patience.” (Romans 8:18-25 ESV)

And what if that truth meets with this incredible statement from Joseph after the sin of his brothers sent him on a journey of awful trial after awful trial:

“As for you, you meant evil against me, but God meant it for good, to bring it about that many people should be kept alive, as they are today.” (Genesis 50:20 ESV)

Satan desires evil against us and our children in disability, but God is writing the story and He is planning it for glory. Subjected to futility in hope.

I have to remind myself that there is both gift and grief in disability. I keep falling off either side. Different people emphasize one over the other, and different seasons allow one to take center stage, but both are true, whether the gift feels huge and the grief tiny or vice versa. Making space in conversation and life for both will surely bless any family who’s walking through the happy heartbreak of disability.

Some dear friends have lost their baby to Trisomy 13 after nine months in the womb. Their story will tear you up and hold you together all at once. The only hope in life and death is our risen Savior.


3 thoughts on “Jumbled Up Thoughts on the Gift and Grief of Disability

  1. I know this is an old post, but it touched me so deeply. You have beautifully expressed, and in a way that considers and glorifies God so well, the sorrows and joys that come with having a child with special needs. Reading this to me, is like being known, in a deep place that very few others do. It is such a unique journey, there is such relief in another’s understanding of it. But our sorrows and joys are not unknown to our savior! Thank you for sharing this.

    How is your son doing now?

    1. Hi Ashley,

      It’s good to be understood and known isn’t it? Titus is doing really well right now. He’s developing, walking, running, has some words and is generally busy and a lot of work, in the best way! His biggest challenges relate to his eating, swallowing, throwing up and sleeping. We’re thankful for his g-tube. 🙂

  2. Abigail, I am so glad to hear he is doing well, those are absolutely amazing milestones!! I can definitely relate to the challenges with eating and g-tubes and sleep, which is why I loved and needed to hear your most recent post today. I have deeply felt the joys and the griefs along our journey, but truly never knew how to make sense of them in a hopeful way that didn’t end in feelings of isolation. But I love the thought, and I think many people can relate to pain in life of a multitude of sources, that there is a time and season to embrace grief, and a time to rejoice at ALL the blessings, and that’s okay. 🙂

    Also, a side note, it may very well not be where you’re at, but my daughter would throw up and have it coming out the other end about 10 times a days as well, that went on for a very long time, and she also struggled with failure to thrive constantly. Then we tried a special blended diet (GAPS diet) through a very nice blender (that the company donated to us, crazy blessing) and did that through her g-tube. Truthfully it was a ton of work, and I know you have your hands totally full already! But it made a drastic difference in her digestions and all the “messy” issues almost completely went away, she gained more weight, and we were eventually able to transition to a smoothies and pancakes diet because that’s all she could tolerate with feeding issues, and then eventually a more normal diet. She is 5 1/2 now and we still have feeding issues, but it is just incredible to look back on how far she’s come, I hope that encourages you in some way! Again, may not be where you’re at with Titus at all, but if you ever have questions or want to chat specifics, just know I would be glad to help if I can. ashleyc82@mac.com

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