Tuesday, November 7, 2017

Diagnosed: Birth -VS- Childhood

I have been doing some thinking (too much probably) about my children and their paths to diagnosis. If you have ever read this blog, then you'll know that my daughter Jaycee was diagnosed with Down syndrome at birth 11 years ago. Just a few months ago, my son was diagnosed with Ehlers-Danlos syndrome at age 7. (If you missed the post on his diagnosis, you can read it here.)

Photo Credit: Short Photography
I responded much differently to each of their diagnoses. After Jaycee was born, I was in complete shock. For 9 months, I thought I was going to have a healthy baby girl. Learning at birth, she had Down syndrome, an AV canal heart defect, and would need an open heart surgery...it was too much! I had a very hard time adjusting to the diagnosis.

With Elijah, the news of a diagnosis was sort of a blessing. I began having some small concerns with him around age 2 when he couldn't run without falling. He ended up in physical therapy and occupational therapy for his low muscle tone for years. There were times when I would be very confused about some of his problems. Why did he have low muscle tone? Why is he "uncomfortable" sitting? Why did his toes bend in funny ways?

I researched some of his problems and ended up with no answers. There were times I was really fixed on finding an answer. There were other times when I would tell myself that whatever was wrong with him must not be too bad. After all, he was age level in academics.

I took him to a few specialists looking to see if there was an underlying reason for his motor delays and muscle issues. The first orthopedic doctor completely blew me off. I mean completely. I was treated like an over-reacting parent. I was told his problems were minor and weren't really impacting him. I disagreed in some respect because he did need both physical and occupational therapy after standardized testing showed severe delays in his motor skills.

The second orthopedic person I took him to a couple years later examined Elijah for less than 2 minutes. He told me he was fine. His gait (the way he walked) was strange, but nothing to worry about.

I was done.

Let me tell you something. There's nothing worse than having some legitimate concerns about your child, and a doctor can't even spend 5 minutes checking into things before he determines there's nothing wrong.

By the time I took Elijah to a podiatrist to look into some shoe inserts, I was not expecting anything earth shattering. This man took an interest in my son. He wanted to hear about some of his problems because he noticed something with him immediately. In less than 5 minutes of watching him walk, run, jump, and move his body, he told me he suspected Ehlers-Danlos syndrome. (We later saw a genetics doctor who confirmed the diagnosis.)

So you see, my son's diagnosis was different. It came after years of questions and second-guessing myself. After knowing what the problem was, so many things made sense. The information was helpful, and it let me finally understand my son.

The future of chronic pain and joint problems in store for Elijah was depressing. That part of the post-diagnosis reaction was similar to learning about Jaycee's Down syndrome and associated intellectual disability. The parts of the diagnosis that are predictive in nature were tough for me for both kids. There are some things about each diagnosis that sounded scary. Unfortunately, time is the only thing that reveals how a diagnosis will manifest in an individual...not information in a book.

I handled Elijah's diagnosis easier in some ways. I had 7 years with my son before he was given a life-long diagnosis. I had time to see my son's personality and strengths. This kid was memorizing sight words at age 3 and begging to sit in his sister's home therapy time with me. He's the kid with a love for presidents, state capitals, and state capital buildings. He loves playing guitar and beating on his drum. Before Ehlers-Danlos syndrome, there was Elijah. I knew that sweet boy well. After his diagnosis, he was the same kid with a different possible future.

It was different for Jaycee. She was born and Down syndrome was there immediately. I had no time to get to know her. Down syndrome was a dark shadow cast over her for so long. I couldn't see past it. Maybe it was because the NICU doctor literally pointing out everything on her body that indicated Down syndrome. I looked at her, and I saw only Down syndrome initially. She was also a baby with a heart defect. She slept and slept and slept those first few months. Her personality, preferences, and opinions became known over time. Jaycee was in there all along, but I knew Down syndrome more than I "knew" Jaycee at first.

Getting a diagnosis for your child at any time is hard. It's an emotional roller coaster, and it changes the life course for the parent and child. But, a diagnosis isn't the totality of a person. There's an individual person with a diagnosis. That person has a personality, attitude, opinion, and my love. That love and bond is stronger than any diagnostic term. I knew after Jaycee that we could get through any present and future diagnoses, because our love was great. By the time Elijah's diagnosis came around, I knew this well. I knew I could face that future with my son, because love has a power to want to conquer all obstacles.

1 comment:

  1. And it's important to make time to see the strengths of the people you know and love.


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