Special Needs Child

Most of you know that I am a special needs mom because of the blog posts that I’ve written on Christian MomLogic. However, I am also the mother of a child that has special needs.

At the age of two, my husband and I took our daughter to a routine doctor’s appointment. We’d recently noticed that a mound formed on one of our daughter’s legs. We didn’t think anything of it, maybe that she’d fallen, or bumped it, and out of concern pointed it out to her pediatrician as we finished our appointment. Some tests were taken and a few days later the results were in and the pediatrician requested my husband and I come in to discuss the results.
We walked into the office concerned because of course, if the results were good, the receptionist or nurse would have relayed that over the phone. I felt nausea creep its way into my stomach as we sat in the chairs and the pediatrician struggled to find the words. Your daughter has a rare bone disease…– the statement that changed our lives forever.

We were newlyweds who were thousands of miles away from home with no family & friends, and an extremely sick child. She needed to have surgery right away. A hazy fog filled the room, it began to spin, and the doctor’s mouth moved but I could not hear the words. A dream, no a nightmare, this had to be a nightmare. I’d wake up, have a little cry, check on our baby and everything would be okay. My mind tried to rationalize what my heart could not fathom.
For years my husband and I dealt with surgeries, casts, leg braces, walkers, hospitals, doctors, and specialists. She had intravenous treatments every other month that required a two day stay in the hospital. The side effects from the i.v. treatments would make her sick anywhere from 4 to 7 days. The doctors talked to us about a bone marrow transplant. Our medical insurance dropped our daughter from our policy. We had to take her to a specialty hospital six hours away, and the list goes on.

I know this may seem like a bit much for some of you to believe but unfortunately my husband, daughter, and I experienced this first hand, I wish I could tell you otherwise. Some of the things I’ve shared, my family and I are still going through, I wish I could tell you otherwise. However, to all the moms, dads, and guardians, who may be finding themselves in a similar situation, I can tell you: Don’t Let Go. There may be times you feel like you’re unraveling, hold on to God for support. There may be times you feel like you’re alone, hold on to each other, you’re an extension of His arms. There may be times you feel like giving up, let faith encourage you. Don’t. Let. Go.

Next week we will discuss some applicable ways to find strength in some of the weak moments when you’re parenting a child who has special needs.