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To The Mother of a Child with Disabilities

By: allison moore

At moments, the world seems to stop, and you realize your life will be forever changed.  Twenty weeks pregnant with my first child, I experienced one of those surreal moments. The doctor was speaking in muffled, unrecognizable terms, saying words like:

“Severely disabled.”

“Mentally retarded.”

“Low quality of life.”

“Termination of the pregnancy.”

I felt like throwing up. I wanted to curl up in a fetal position, crawl in a hole, or do anything that would take me back in time and change this reality. There couldn’t be anything wrong with our baby. We did everything right. We loved Jesus. We didn’t deserve this. Could they be wrong? I know God doesn’t make mistakes, but really?

There were many private tears over the next six months. I didn’t know how to act or what to say. I put on a brave face like I thought I was supposed to, but my strong front was suffocating me. Holding it together was the only way to not break into a thousand pieces.  

I heard a hundred stories of wrong diagnoses or of miraculous healing, but in our case the doctors weren’t wrong. My daughter was born with Pitt Hopkins syndrome which comes with a host of physical and mental disabilities. The Lord allowed one of my worst fears to become reality for reasons I may never fully understand.  

Falling Apart

Over the next several years, I tried to pretend that I was OK with all of the scary details of caring for a child with disabilities.  Driving home after doctor visits and therapies, listening to her cry as she was seemingly tossed around and pushed to her limits, made me rethink everything I thought I knew about parenting.  I just wanted to hold her in my arms and make everything OK, but I couldn’t.  

I wasn’t happy with God at that time either, and it didn’t take long before I started shutting people out because I was sick and tired of hearing well-meaning people tell me:

“God gives special kids to special people.”

“God will never give you more than you can handle.”

“It’s like planning a trip to France and ending up in Holland,  not too bad.”

The truth was this life didn’t feel special. It was WAY more than I could handle. And I’ve never been to Holland, but NO THANK YOU!

Picking up the Pieces

I adored my little girl, but she continued to slip farther and farther behind despite our hard work and exhausting schedule. Caring for a child with disabilities was more heart wrenching than this new mama could bear.  I needed help!

3 Things I Wish I’d Done Sooner

1. Ask God for help.

I’ve seen my sweet girl struggle, acting like she wanted to jump out of her own skin, thrashing, hitting, and pinching anyone within reach. Persistently bloodied and bruised both physically and emotionally, I’d often find myself face down in a pool of tears begging God for help. I would do anything to rescue her from the turmoil caused by her disorder, but that’s not the path we are given.

Psalm 46:1 promises that God is our refuge and strength, an ever-present help in trouble.  He’s not upset at me for being weak, but He wants to be my strength.  He already knows my heart and my hurts.  He’s waiting for me ask.

2. Let people in.

Galatians 6:2 tells us to carry each other’s burdens, and in this way we will fulfill the law of Christ. The only way someone can help you carry this burden is if you’re honest.  I thought that if I admitted or acknowledged my pain that somehow it would make my God seem insufficient. I acted like God needed me to make Him look good. (It sounds crazy, I know.)  

It took years to be able to admit to friends and family when I was a wreck. I desperately needed help navigating through seasons of some of the greatest pains I could’ve ever imagined, yet it was scary to let people in.  We weren’t created to do life alone, so when I let people in I found I was loved and cared for much more than I ever could have imagined.

3. Believe that God will give me what I need for each day.  

Jesus told the apostle Paul, “My grace is sufficient for you, for my power is made perfect in weakness” (2 Corinthians 12:9). The same is true for us today.

God proves over and over again that His grace is sufficient for each day. Grace is not just a fancy word used in church.  Grace — the unmerited favor of God — is what sustains me in the deepest crevices of my hurting soul day in and day out. It’s the joy and the sadness that turns my focus to a God that is bigger,  better; a God that is more than enough; and a God who consistently does exceedingly, abundantly more than I could ask or imagine.  I don’t often know what He’s doing, but I trust in a God of great grace who cares for me and promises to never leave me or forsake me.  

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