Since the day we got Nora’s diagnosis at just 5 months old, I’ve thought about something related to her condition or treatment Every. Single. Day. I’m not complaining, I know we all of have something we are dealing with in life, I’m no different than anyone else. And I’ve taught myself how to deal with it so that it doesn’t constantly weigh me down. Like anything, some days are better than others. But I’m so incredibly grateful to have gotten this diagnosis in the age of the internet and social media. I can’t imagine trying to navigate through all the ins and outs of this complicated rare disease without all the resources and support online.
Through social media, I’ve met so many other parents and families who deal with some of the same things we do. I’ve learned so many helpful things, they have been there as an amazing support system that unless you are living this you can’t fully comprehend; they can hear my tears and help wipe them away through the keystrokes of their computers or tablets. And they are right there to celebrate victories with emotionicons and uplifting typed words. I have strong feelings and friendships with many of these people, yet I’ve never met them. It’s weird and really cool at the same time.
A while ago I met a mom in one of my smaller support groups that’s dedicated to just congenital scoliosis. It’s a much smaller group simply because it’s so rare. She was new to the group and was sharing her daughter’s story one day. I was instantly excited and intrigued, her daughter’s case sounded very similar to Nora’s. It was incredible, that just doesn’t happen with congenital scoliosis, they are all so very different. Our daughters were only a few months different in age, they both have hemi vertebras at T-10 (Nora has one at T-11 as well but at the time we were hoping it wouldn’t be as big of a problem as we later learned it is) and had the same degree of curve, they were both the same height, weight… the list went on. And we learned we were both in the process of setting up appointments to meet with the same surgeon who is considered one of the best in the country. It was just what I needed at the time, to actually find someone whose child’s case was so similar.
We shared with each other every single report and x-ray we received from our surgeons. I even shared it all directly with our surgeon asking question after question. In time, I found out that, yes, our daughter’s cases were very similar yet they were still different. We were going down different directions of treatment and soon we learned Nora had two discs in a row that would have to be addressed, changing our treatment options and her daughters case changed a bit too. This was difficult and confusing for me at the time, it was hard to wrap my head around the different directions and it scared me. I kept thinking our cases were still similar; they had to be treated the same way. It took time on my part to fully grasp the complexity of this disease and deal with my own denial yet again.
We still continue to share every detail we get with each other. We’ve also both learned that our daughters will be facing lifelong battles with scoliosis; this isn’t a one surgery and done situation. Another punch in the stomach neither of us were really expecting.
This woman’s daughter is scheduled for surgery next week. For weeks now we’ve been in contact with each other pretty frequently, often discussing all the details, coming up with questions to ask the slew of doctors who are involved, talking about how we will actually handle surgery day, how surgery will impact the rest of the family, etcetera, etcetera.
I think about her, her daughter and her family a lot and lately…all the time. I talk about her and her family with Matt pretty often too. So much so that Matt is even asking often how things are going knowing full well how stressful it is leading up to surgery. Yet I’ve never met her or even spoken live words with her. It’s the oddest thing to feel very connected to someone you’ve never met. I’m convinced if we lived near each other we would be friends. I wish I could be there to give her a hug or hold her hand when her daughter is in surgery. I know I will be thinking of her that entire day, hoping and praying.
I hope to actually meet her face-to-face one day because we understand each other in ways no one else really can. It’s a bond I can’t explain. And yet it’s still strange to me on the surface. I hope our daughters become friends too one day, some type of modern day pen pal or something. Somehow in my crazy head it’s a comforting thought in the sea of scary facts and unknowns swimming in my head, the idea that our girls could have someone else out there who they can relate to, confide in and is someone who actually understands firsthand what each other is going through, is one of my hopes for both of these girls.
4 thoughts on “Social Media Hooked Me Up with My “Match.com” Style, Perfect Mom Match.”
Great article Jackie. When do you meet with the specialist surgeon?
Sent from Surface
We have gotten 2nd opinions in San Diego from a team of 3 leading surgeons, Chicago and a verbal from Texas. I don’t know if we will be seeking any more opinions. They tend to me us more crazy, since there is no one perfect option. It just doesn’t exist. It has strengthened our opinion of our surgeon here even more. So that has helped.
I am really hoping this message gets to you even though I see this is an older post. My son has congenital scoliosis with hemi-vertebrae. He also has what is known as spondylocostal dysostosis which is a autosomal recessive condition that neither my husband nor I knew we had. Along with the scoliosis and hemi vertebrae, he also has several fusions of several ribs. Our orthopedists has consulted with orthos from Boston and Philadelphia about MP’s case.
Right now our most viable option is casting. We have it scheduled for 12/7/17, and I have since been searching for support. Your posts have helped me so much to understand, to laugh, to cry, and to make me feel like someone else knows… We have undergone MRI with sedation, several stays in NICU with respiratory viruses, Xrays, and a many other things with MP.
I just never knew that scoliosis would have to be a focus in my life! Are there some online support groups that you recommend? Or other help you can steer me to?
Thanks in advance!
Yes, if you are on Facebook please check out the closed group Congenital Scoliosis Support. I’m an admin there and can approve you.
Also look at early onset scoliosis and Mehta casting. That’s another closed group that can be helpful with casting life. Keep in mind that group is primarily idiopathic scoliosis where their goals of casting are very different than congenital casting. Also look under the menu tab of my blog and find most popular blogs. I have one on casting that will be very helpful. Let me know if I can do anything else.