The Scoliosis Nightmare Continues…..

Warning, this post is not about fashion nor accessories. It’s not even about a fancy hotel Neil and I traveled to.  Usually on Mondays, I like to empower and motivated all of you with my inspirational quotes or “How-To’s” on how to deal with stress, etc. Well, today, all of that went out the window for me. As I sit here trying to grasp at the gravity of today, I decided to write about scoliosis like I used to. Writing is what got me through some of my darkest times, and so today on CCG, I am writing about scoliosis once again.

Our Scoliosis Awareness Story

Long ago, before my surgeries, I began writing online as a way to help cope with my medical issues and what lay ahead for me (You can read a more detailed post here). Putting it out there into the Universe not only helped save me mentally, but a new creative outlet emerged, which I fell in love with. In the process, I learned that what I was writing about actually helped people. Now, although I write about my fashion lifestyle and subjects within that niche, I try to marry the two together and inspire those who continue to follow me on this journey. Which I thank you for wholeheartedly.

I honestly don’t know how to begin this next paragraph. At this point in time, my body is numb and tingly. I can’t even think or use my brain. The last time I had this feeling was a year ago when my little 7 year old Emma was diagnosed with the same condition, Scoliosis. I felt incredibly guilty. I felt angry. I felt utter sadness. It was one thing to handle all of this on my own but to know that my child will have to endure this like I have made me sick to my stomach. I remember the anxiety and panic that took over my body. I pushed it down so deep to try and handle what was in front of us. It felt like I could burst at any given second. Have you ever felt like that? You have this façade of normalcy on the outside, but it feels likes your body is moving a million miles a minute and you can’t shake it? I sadly had to experience that moment all over again with my oldest daughter, Laura, today.

Saturday, while curling her hair for Homecoming, I noticed her back looked off. I immediately had her undress and bend down to touch her toes. In that moment, it felt like my heart sank into my stomach. I don’t know…is that even a saying? I called Neil upstairs to check and we agreed that I would need to get her an x-ray immediately. Neil tried to remain positive while I knew in my gut it was bad. Luckily, we know some awesome people in the spine world and they got Laura in at 8 am this morning. Although I tried to mentally prepare for today, it has been really devastating to say the least. Following that appointment, I had to take Nicky to his preschool pumpkin patch field trip. I will admit it was hard sticking a smile on my face and interacting with other moms. What a freaking nightmare.

I can’t stop wracking my brain as to how I didn’t catch this until now when I check my kids regularly. With Emma, I was able to detect it very early on and even though it was severe for her age, we have been bracing for a year and doing everything we can to hopefully ensure she will not end up needing surgery as a teenager. And all while I am dealing with Emma’s diagnosis as well as my own medical issues that just don’t seem to get better EVER, now Laura will have to be braced. Since she is already at 38 degrees, bracing will not reduce the curves but hopefully keep them the same. What worries me is she will (eventually in 2-3 years and 20 hours of bracing per day) need surgery fusing her spine together, something I have tried so hard to prevent. I feel horrible that my children will have to live with this for the rest of their lives. It doesn’t get “better”. Was I selfish to have four children who all may very well end up with this disorder? This just sucks…….big time. Devastated doesn’t even begin to describe how I feel right now.

So what now? Well…..after sobbing in the car by myself while I waited for Emma to finish soccer practice and then once again tonight in the shower, I am pulling myself together to do exactly what I did when Emma was diagnosed. Tomorrow, I will drink my coffee, read some quotes and sit down at the table making phone calls to get this new plan in place. Because….that’s all I can do. That’s all I can control in this moment. I have to stay strong for these brave girls of mine.

For those who aren’t familiar with Scoliosis awareness it’s a deformity of the spine that if left untreated, can become very serious and detrimental to your overall quality of life. Prior to surgery, my S curve was 83 degrees and with the rate it was going, I would have probably ended up in a wheel chair by 40. You can see pictures in the link above. It’s very rare to have severe scoliosis and ever more rare to have multiple children who suffer from severe scoliosis. Apparently my shitty scoliosis gene is a strong one. Super!

While driving home today, Laura stared at her x-ray. I could tell she was upset. I know what’s running through her mind, because I have faced this same reality. It’s tough. She looked up and told me what Emma said to her this morning before we dropped Emma and Will off at school and departed for the appointment. Emma gave her a hug and said, “Laura don’t be upset. It’s going to be okay. Maybe if you do end up needing a brace, Mom will get you a Pandora bracelet too.” We couldn’t help but laugh. If you have followed me for some time you may know that when Emma got her brace, we bought her a special Pandora bracelet and will get her one meaningful bead for each brace she must wear over the next 8 years. Hearing what Emma said and the fact that she can find some type of silver lining in this whole crappy ordeal, including a well timed laugh, made my heart so full. I really do have the best kids and I will do whatever I can to make sure they know that and guide them along this journey.

“Life is not about waiting for the storm to pass. It’s about learning to dance in the rain.’

You can read my other post on scoliosis awareness and my story, here. Thanks for reading!