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.