I feel somewhat guilty that it has taken me this long to write a post. It has been emotional and sometimes difficult to navigate through this mess called scoliosis and what it’s doing to my family. I wanted to wait until I had more information and calmed down before writing an emotionally charged post while sobbing.
The last month I have come to realize that this pain will never go away. I have the same pain as before surgery. I often think to myself how will I continue living like this for another 50 plus years? Anyone with severe chronic pain will be able to relate to this. It literally eats at you each day mentally and physically. Some days, I am so emotionally drained dealing with this that I become depressed and don’t want to do anything. However, the reality is I can’t do that. I have four kids, a husband, and a business I need to run. I am still struggling to find the balance and get back to normal life. Well, normal for me life.
There are days I feel like I can manage it until, for example, I try to get Nicky in the car seat and just from leaning in (from my waist) to buckle him causes pain. Every activity I try to engage in turns into pain. Doing dishes, which consists of squatting and standing over and over, folding clothes, making dinner all cause pain. I can’t even dance around the house to music without needing to sit down after 5 minutes because of the pulling and throbbing in my back and spine. I continue to do all of these things, because I have to. I don’t want to look weak in front of the kids or show them that Mommy can’t do anything anymore. So, like always, I suck it up and march on. There is also a new reason I must do all of this with a smile now as well….
When I was thinking of a blog name for this site, I came up with Scolimom because, well, I am a mom and I have scoliosis. The term Scolimom has now taken a whole new meaning which I never ever wanted it to. Ugh, here come the water works.
Emma, my precious little mini me Emma, was diagnosed with scoliosis last month. It was me who caught it. Before school, she had asked me to put on a necklace for her. Standing in her underwear, I had noticed her ribs were a tad uneven and so I asked her to turn around and touch her toes. I have become neurotic about this ever since we found out how bad my curves had gotten and have checked the kids pretty regularly like a nut job. Every time before, I didn’t see anything. This time, what I saw instantly made my heart hurt. I felt like I was sucker punched in the gut over and over. I couldn’t breath. I felt panicked and while all of these emotions took over my body on the inside, I had to smile and say, “You look perfect” after she asked if everything was ok.
Once Neil came home that afternoon, I told him to go check her back. I was hoping my eyes were playing tricks on me. I prayed all afternoon that I was wrong; that I didn’t see what I did. He confirmed it and I immediately emailed our fabulous pediatrician. I took her in the next morning and our Doctor confirmed the diagnosis with an exam and wrote out an order for an X-ray. From there, I took her down to X-ray. She looked so cute in the little gown, but the look on her face as all of this was happening breaks my heart every time I think about it. All I could do was give her a smile and a thumbs up. As they put her in position, the techs asked if there was a history of scoliosis in the family…..Oh man…. is there ever. I am a walking talking specimen of scoliosis gone wrong. I stood back by the computers so that I could see the images as they popped up. In that moment, it all became too real. I wanted to drop to the ground and scream. Sure, I knew this territory somewhat with my 4 year old son, Will. He has a couple medical issues that have kept us worried and these feelings have been felt before. It’s hard not to worry about your kids, period. Maybe it’s because I know the long road ahead for her. A road I didn’t want ANY of my kids to experience. Isn’t the timing wonderful?
Yesterday, we met with her new orthopedic spine specialist. He let us know she has a small thoracic S curve, like mine, with degrees of 15 and 10. These are larger than what we were hoping for and the fact that she is only 7 years old and hasn’t even hit puberty yet, is a HUGE sign that this will be progressive like mine. At this point, they won’t do anything for her except monitor her. Originally, the doctor let us know that they don’t start bracing until the curve reaches 25. At that point, the mama bear in me came out and I basically said that we were not comfortable waiting for her to get to 25 degrees and then brace her and hope that it works. He let us know, the smallest curve he has braced was 20 and we agreed that was a better idea we could come to terms with. This brace will have to be worn at least 18 hours every day. That means any activities after school will have to be done in a brace. Its hard and plastic and from experience, I know it’s not comfortable. It upset Emma when she heard she will eventually need a brace. She got in the car and began to cry because she doesn’t want to wear one. She said all the kids at school will make fun of her. I wish she was wrong but the sad fact is there will be mean kids who say horrible things along the way.
I feel so incredibly guilty this is happening to her. I would go through what I have 10 fold if it took this all away from Emma. It’s my fault she has this to deal with. It’s my fault my husband has to watch not only his wife suffer from this but now his daughter too. I feel horrible. The guilt now eats at me EVERY. SINGLE. DAY. I also feel extremely helpless. Right now, our hands are basically tied. We have to sit and wait for her to get worse before anything else will be done. I have to let her body twist more and her spine to curve more before actions can be taken. I don’t want it to progress past this. 15 and 10 are 15 and 10 too many. I sometimes wish I didn’t know how this was all going to play out. I wish I was naive and didn’t know anything about scoliosis and could listen when the doctor said calmly that we can brace her at 25 degrees. Every part of me is freaking out by this. Bracing isn’t 100%. She could still need surgery eventually. Last week, she told me I was ruining her life because I wouldn’t let her eat a popsicle. I can only imagine how she will feel about me as she goes through all of this now.
For now, while she continues being a kid, I will spend my time researching anything and everything that could possibly help her. I refuse to let what has happened to me be her reality too. I cannot sit back and wait for her to get worse while we do nothing. It’s bad enough she has watched me go through the last 8 months of hell. Her immediate reaction to being told she has scoliosis is fear because all she knows is what has happened to her mother. I don’t blame her one bit. Luckily, her stubbornness, feistiness, and bigger than life personality will help get her through this. If I have to sleep with her every night to keep that brace on her, I will. I will not let her feel alone for one second.
I wish this was a light hearts and happy post. Really, I do. I have spent my time blogging on my other site, ChampagneColoredGlasses.com because I don’t have to dive into all of this emotion and pain, and I can avoid thinking about all of this on my other blog.
8 thoughts on “F@#! Scoliosis”
Hugs dear April- I know this is so very hard to have to accept and process…and manage as you go forward. The terrible knowledge you have had to learn will be useful…but I understand when you say you would take it all on yourself if you could to spare her. Mama bear is right…
Sending love and light…I wish there was a magic wand for this…I do.
April, I don’t know what to say other than I will pray for the adorable Emma and your whole family. There is nothing that can take away the guilt and pain that you are feeling right now. Please remember that you are not only an amazing mother but an incredible woman with strength of steel. You will be her biggest advocate through all of this. Sending huge hugs to all. xoxo
April- as you know, I have a small z curve that has been managed with physical and craniosacral therapy. Physical Therrapy Specialties in Pleasanton is awesome with kids and treating scoliosis.
As for your guilt, I can absolutely relate. But, I’m on the other end so maybe I can lend some perspective. My cancer is genetic- I’ve been monitored for several years now with the knowledge that I had an 87% chance of cancer. When I was diagnosed, it was exactly what my mom had. She felt awful. She passed me the gene and felt some responsibility for my cancer. But I don’t blame her. She is my ally. Having seen her go through everything aaa awful, yes, but I know what’s coming now. I know what to do, what questions to ask, and how to advocate for myself.
When talking over having kids with her, I expressed that I would feel so much guilt about passing the gene myself that I didn’t even want kids. She told me that was like saying I wish I wasn’t born, and she’s right. Sure, I inherited some troubles, but I wouldn’t trade my life or my family. As I said- it makes them my strongest allies.
Written from my hospital bed 😉 Xoxo
Oh April I am so sad to hear all of this. I will be praying for Emma and your whole family. You are such a great mama and I know you will be such an advocate for Emma moving forward. Hugs❤
There’s no way I can understand what you are feeling, but I definitely can relate to little Emma. I was diagnosed at 15, and my parents routinely complained that no one had caught mine earlier. By the time my curve was discovered it was 45 degrees. I’m not a doctor, but from my experience I learned that when it’s caught that young, sometimes there’s things you can do to correct it so she may not need surgery. My cousin started wearing a back brace at 9. Yes, she had to wear it through her teen years which was annoying and embarrassing but she was able to ever avoid having surgery.
At the same time, if she does ever have to have surgery (which again, is awful in it’s own way and I know my mother talks about how difficult it was to watch me go through that), recovering when you’re young I imagine is a heck of a lot easier than when you’re an adult. Sure, I had to spend 2 months on the couch and 6 months to a year fully recuperating to the point where I could swim or lift more than 25 pounds (or drive, now THAT was horrible as a sixteen year-old), but ultimately, I’m glad I did it then and not now. I’m thirty-one years old and I really haven’t had any pain since my recovery period ended when I was a teen.
My point is, this is not YOUR fault. Sure, there’s genetics (my husband and I have both had scoliosis surgery, and I worry all the time about children we don’t even have) and then there’s just bad luck, but ultimately you are a great mom to all your kids, and sometimes, it’s even comforting to have someone who has gone through the experience before you. The fact that you’ve been so on it with checking her is a gift in itself – I wish someone had thought to do that when I was a child.
One thing I’ve only discovered recently is scoliosis support groups for girls. I would love to get involved in something like this someday (maybe if I move back to America, so far I have yet to meet anyone on Nantucket that has gone through this). I found this one recently and wished that something like this had existed when I was young – I literally knew no one that had had surgery for scoliosis and I think it would have really helped me to have someone to talk to.
Just remember, Emma is ultimately going to be STRONGER because of this (either figuratively or literally because of you know, the titanium haha) and you will always be her biggest supporter. Thinking good thoughts for your little girl and sending lots of positive vibes your way too 🙂
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HI April, I’m also sorry to hear this , but good thing they caught this young. You never said in your blog (not that I know of) if you missed the bracing period or just didn’t comply with the brace. In my case, My parents sort of ignored it and now I’m crooked. I just want to say the scoliosis association is great and curvy girls is a great thing that they did not have when I was a child. Now of days they also have “tethering and stapeling” which is less invasive than what you went through. Schroth is supposed to be great , but its expensive. Depends on your insurance. Keep your chin up. I’m also following your other blog and your looking wonderful and straight and I bet your enjoying a whole new wardrobe. My wardrobe is big and baggy , and vests to camophlage the scoliosis.
p.s. I also want to mention, I’m not a fan of the heavy backpacks! I’m sure that contributed or did not help my scoliosis. I was a little skinny 9 year old carrying a 40 lb school bag seven blocks to school over my right shoulder. Its no wonder I’m crooked!. If you can try to get her an extra set of books from school so she does not have to strain her young developing spine with the weight of the school bag.
April, Emma is gorgeous. Your blog made the think, when I think of my three boys, its their imperfections that draw me in and make the love beyond measure. In a way, that’s exactly how and why they’re special to me.
Have you talked to your doctor about Magec rods? I have no idea if Emma would be a candidate, I am certainly no doctor and cant diagnose nor pretend I can, but its hard for me to hear your story and not suggest you at least find out for Emma.