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.
If you would like to correspond, my email is: firstname.lastname@example.org. I know how isolating it can be to feel like your 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.