Reading After A Diagnosis: A Cautionary Tale

Almost one year ago, my son was diagnosed with Ehlers-Danlos syndrome (EDS). It was a diagnosis that came after a few years of questions and unexplainable issues. In a way, the diagnosis was a relief after getting no answers for so long. During my son's initial diagnostic appointment, the genetics doctor gave me a few book suggestions that several families have found beneficial. I scanned through the list eager to find something to read. 

Within a week, I purchased one of the books, Joint Hypermobility Handbook. I started reading the book shortly after receiving it. A year later, I still haven't finished the book. In all that time, I have made it to page 150 of 220. Before you remark on my slow reading, I want to clarify that I have read several books in the past year on my Kindle. I have simply chosen to take my time with this book. Even though I was eager, I wanted to keep my sanity. 

You see, I've been through a diagnosis before. Nearly 12 years ago my daughter was born and subsequently diagnosed with Down syndrome. Within a month of her diagnosis, I had a stack of information and books. I devoured them like I needed them to survive. A fellow parent advised me to take Babies with Down syndrome: A New Parent's Guide in chunks and reference it when needed. I didn't listen. I read every word in that book. And.....it made me so very fearful. 

As I have written before, my daughter's diagnosis at birth seemed to trigger more emotions and fears for me compared to my son's. (See my post Diagnosed: Birth VS Childhood) I suppose I took in all that information about Down syndrome because I wanted to get a sense of my daughter's future, my future, and our future together. She was so young and tiny; there were so many unknowns. I read everything to understand my newborn but also to try to see the unforeseeable future. 

The new parent's guide book is lovely, and I don't want to sound like I'm bashing it. It has basic information for a new parent that is helpful. I fully support new parents reading this book- just not the way I did. I didn't use it as a reference when issues came up or to research certain topics. I read it cover to cover, and I walked away feeling very overwhelmed by all the possible things that my daughter may face. 

Celiac Disease? Atlantoaxial instability? Sleep apnea? Those sounded scary. Leukemia occurring 10-30 times more often in children like mine. What?!? Thyroid issues? Late toilet training. How long will Jaycee be in diapers? Therapy. Special education. IEPs. Yikes! It was ALL too much to take in at once. 

The book scared me. Every possible thing that could occur with someone with Down syndrome was listed. Of course not every baby would end up with all the problems in the book, but I didn't know what was in store for Jaycee. In the state I was in, which was a post-pregnancy hormonal driven state, I was not prepared for this information. 

I look back now and wonder what I was thinking. Why didn't I just put the book down? It was just a book of possibilities and basic information, not firm plans for Jaycee. The book sparked a ton of fear in me, so I recognized what was happening last year with a different book. 

I was smarter for child number two and his diagnosis. I started reading the EDS hypermobility book. There were "ah-ha" moments. "Oh that's why he does that," or "I didn't know that issue was related to his EDS." These parts were helpful to understand my son. 

But then came one too many bits of information that left me feeling unnerved. I felt it rise up in me again. The fear of the unknown for my son and the list of possibilities. Starting with...Pain that affects a person's ability to do certain jobs as an adult and requires several medications to control.

After that section, the reading stopped for awhile. I had to digest that and mourn my son's future with pain (or predicted pain). Then came sections on heart palpitations and POTS... After my daughter's heart problems in the past, this one kept me up for a few nights. I didn't want to think about my son having heart issues too! That led to a very long pause in the reading again, which was followed by a serious internal debate on if I should continue reading this book at all. I was starting to get fear and anxiety from the list of possibilities, but few applied to my son currently. Who knew which ones would apply to him ever?

After a few months, I started reading again..headaches. Not fun. Unique dental challenges. Ugh! A few more pages...I stopped. And there I remain on page 150 after beginning a year ago. 

I read the Down syndrome book like one pulls off a band-aid. One quick painful motion, but it was over. I knew "everything" I needed to know after it was completed. I didn't like how I felt during the process though. The EDS book has been read like option two for a band-aid's removal. Slow, methodical. The pain is duller but it's over a longer span of time. I'm still not done with that band-aid. I don't know what other symptoms will be described beyond page 150 and if I'll feel better or worse after reading them.

I know what I need to know for right now. I love both of my kids. Whatever happens in the future, I'll face it with them. Every person with a diagnosis is unique. There are no two children with Down syndrome who are exactly alike in their challenges, strengths, and weaknesses. Some of the things that worried me about Down syndrome didn't happen to Jaycee. The same will probably be true for my son. Whatever EDS brings to Elijah, I'll support him through it.

Right now though, he needs a mother with a clear mind not bogged down by fears and possibilities that sound hopeless. So I'll stay on page 150 as long as I need to be. Instead, I'll open up my Bible and read what God has to say too. I'll ask God to help me parent these remarkable children, and give me hope for our future.

³ We can rejoice, too, when we run into problems and trials, for we know that they help us develop endurance. ⁴ And endurance develops strength of character, and character strengthens our confident hope of salvation. ⁵ And this hope will not lead to disappointment. For we know how dearly God loves us, because he has given us the Holy Spirit to fill our hearts with his love.

Romans 5:3-5 NLT