The Beginning

My son will be six years old in a week. I thought it would be a good time to recap for new readers. Thanks for reading!

I really began to wonder if there was something larger going on with my son when he was 2 months old. By that point we had been through a lot, he and I. He had acid reflux, constipation, struggled to nurse, never slept—And by never I mean our nights were from 11pm to 2am. Then he proceeded to cry from 2am to 6 am. He didn’t nap. We just had moments of no crying where we would relax and breathe for a little bit.

But at that 2 month well-baby appointment, the doctor read down the list of milestones for that age, and for each milestone I answered, “No.” No. No. No. All the way down the list. I chalked it up to the fact that he was born three weeks early and might be behind developmentally by that length of time. I told my mom about the appointment, and we talked about it. I said, “I need to keep an eye on his milestones. It could be that he’s just behind because he was three weeks early or it could be something bigger.” My mom, the ever encourager, agreed.

 At his next well-baby, I answered a joyful yes to the first milestone on the list and no to all the rest. I pulled up the milestone chart for myself and could see we weren’t making any progress. By this point, I was getting a lot of advice from family, friends, and even perfect strangers. His six month well-baby wasn’t much different from all the others. The doctor warned me to keep an eye on him while he was on the changing table as he would be rolling all over the place, and I didn’t want him to roll off the table. That wasn’t anything new to me. While this was my first time experiencing motherhood, it was not my first time to change diapers, feed baby food, table food, and even potty train. My youngest siblings were 11 and 14 years younger than me. I was not completely inexperienced. But, experience told me something was wrong when at 7 months he wasn’t rolling over in either direction, nor was he rolling or moving at 8 months or 9 months. He was also losing weight. By this point I was adding formula to his breast feedings but to no avail. We paid $80 a month to weigh him at the doctor and have them tell us to feed him more. I fed him every chance I got. He threw it up every chance he got. The acid reflux was just getting the best of him.

I decided to take matters into my own hands when he was 9 months old. I started working with him and literally taught him how to roll over from his stomach to his back. He thought that was the greatest thing ever. It took a month for his little muscles to strengthen enough for him to do it on his own. At ten months, he was barely sitting up, and I balanced him all around with pillows to help strengthen his core muscles. I did little sit ups with him till he was too tired to continue. We still didn’t sleep. He was still losing weight. I was still getting lots and lots of advice. Advice sounded like this, “If you would do this, you wouldn’t have that problem,” they would say. I began to think that while I was the oldest of my family with experience, I certainly wasn’t cut out for motherhood. Somehow, God had made a very big mistake. Hadn’t he known that I couldn’t handle raising a child. And, where was He in all this? It certainly didn’t make sense that children who are born perfect with ten fingers and ten toes, could possibly have as many health issues and problems as my son. But, God was there! He was in it all! More about that later, but for now, just trust me when I say God was in it and had a greater plan.

At his 12 month well-baby appointment, I voiced my fears to our pediatrician. At this appointment not he had only met one or two milestones, and he had had two eye surgeries, was on various medications for the reflux and constipation, and now we added no growth since he was 9 months old, and no reflexes at all. You know the little knee tap that makes the knee jump. His didn’t do that. He had none—No reflexes. My baby was almost 1 year old and wear 6-9 month clothing. He had long since dropped off the percentile chart.

“Could there be a bigger picture?” I asked the doctor. “There are so many different issues in different areas and different systems of his body that it just seems like we are missing something. It seems like there is a bigger picture that connects all the dots.” I remember saying that like it was 5 minutes ago. Those words rang in my ears as I spoke them. In an odd way, they were like church bells ringing. There was just no way to miss those words. The doctor agreed and handed me two business cards. One was for a geneticist and the other was for a developmental pediatrician. I had never heard of either one and didn’t even know what to expect. But, as I accepted those cards it was the beginning. It was the beginning of climbing what seemed like Mount Everest.