If you found your way here and are a parent of a special needs child, welcome. I’m so glad you’re here. My heart is tender for you and in leu of being able to give you a hug, I hope some of my wrestling and rambling in writing form will be of help.
Our youngest son has a hypoplastic pons (small part of the brainstem), a hypoplastic corpus callosum (thin connection between brain hemispheres) and delayed myelination (global delay). He suffered a life threatening seizure at 14 months. He doesn’t eat by mouth, because he can’t swallow properly and throws up a lot. He is fed through his g-tube. He’s delayed, but progressing (walks, runs, has words, is delightful and a stinker). He also has significant neurological sleep disruption.
Here are some of my writings as we’ve walked in the world of special needs. They’re listed in chronological order.
A Hard Providence From Our Loving God
When God Roars In Our Suffering
Loosening The Noose and Matching Socks
Bitterness, Forgetfulness or Deeper Sympathy: Where Will Your Suffering Take You?
Jumbled Up Thoughts on the Gift and Grief of Disability
The Puff of Plans: My Calendar Lies to Me
What Does A Happy Ending Mean?
A Tear For The Clean Slippers That Aren’t
Podcast Interview on Risen Motherhood
Downpour of the Feline and Canine Variety: On Being Clobbered and Getting Back Up
On Saying “Everything’s Fine,” When It’s Not: Our Solidarity with the Shunammite Woman
If you would like to correspond, my email is: hopeandstay.blog@gmail.com. I know how isolating it can be to feel like you’re living in a parallel universe to those around you–some similarities, but never seeming to cross lines. And I know the toll of years of sleep deprivation; the groping in the fog for something sturdy to hold onto.
I want you to know you’re not alone. The Lord has promised to be with you always. He’s given us his Spirit. He’s also given us one another–his body, the church. I’ll tell you my favorite piece of advice: hang in there. It may sound cliched or trite, but there’s truth in it. Sometimes we may not be triumphantly walking through this life, we may just be hanging on. But we are held, friends. We are held, so that we can hang in there through winter, even when it seems to last all year. Christ has come, and he’s coming again. So hang in there, and don’t be surprised when you find yourself blossoming in wintertime.
Hi, I am Bethany Tanaka. I briefly read your article today on Desiring God. I want you to know that I had epilepsy for 10 years growing up. I definitely haven’t suffered as much as you and your son, but I do understand what it feels like to go to the doctor a lot, take anti-seizure medication, have MRIs and EEGs.
~Bethany
I am so excited that I found your blog through desiring god! My 3 yr old daughter has a brain malformation and her list of needs is extensive…it is tiring, and my soul constantly needs refreshment and encouragement. I can’t put into words how happy and blessed I feel right now.
Hello there,
I just read your incredible article on DG today and it is absolutely one of, if not THE most refreshing, TRUE, challenging, intelligent pieces on Christmas I have ever, ever read. And I’m taking it to heart and know I will be leaning hard into my Christmas this year with Him in fresh ways as a result! I clicked on your blog and was happily surprised to find the “special needs” section, as I have a 5 y/o son with Down Syndrome who is the apple of my eye. I cannot wait to read through your articles. I already deeply appreciate your voice. Thank you, truly. And Merriest of Merry Christmases to you and yours.
Thank you, Maela! Merry Christmas to you and yours as well.
Thanks Abigail.
I think it has a been time ago since I read these sincere words. I do not have a children with problems like you, but your words have struck me because they came from the deep part of a broken and restored heart … God works in such ways our minds can not grasp yet … Thanks ( From Barcelona, Spain)