angel
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If you do find something llet us know how it works.
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When I read her first article about the initial health problem I was a bit dismayed. But I guess many of us have had to endure more than one diagnosis. When I was 11, I was diagnosed with stargardt’s disease, chronic kidney stone at 18 and H. pylori at 21. Each one has taken its toll, , but I guess SMA teaches us earlier on how to adapt and overcome. We all have different ways of coping and dealing. I personally pray, and I will for Kala. I know after reading some of her book, that may not be her particular method. But I have found that believing in something bigger than the frailty of our own existence can help put my suffering into perspective. Sometimes crying out to God (with a suction machine close at hand) truly does offer some peace, and occasionally healing. However, I am not above temporary fixes like music, laughter, pain relieving substances, creative endeavors, stimulating encounters and good ol’ entertainment escapism. How do the rest of you cope, find solace and comfort and/or overcome?
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It is a good thing to be small when someone has to pick you up! I do not know how Junior you mean by junior sizes, like preteen (3, 5, 7) or smaller like (10, 12, 14). But being on the petite side myself (5′ 90 lbs). I can still usually find my size in the adult stores (petite section). But they do sell the panels to make your own maternity pants. One great crafty mom I knew just took tube tops and made her own panels. I am sure the right seamstress could hook you up unless someone in your circle can sew. We are not very gifted in the home economics department in my family, more accountants, writers, and engineers. But the good thing about being an accountant is you usually know someone who does what you need. Remember, act like a Chihuahua and never let your size stop you from getting what you need! Sorry my posts are always long!
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I used to wear a waist cincher when I was in my wheelchair for long hours. Even after spinal rod fusion I still have a bit of a curve and it would help me without wearing down my stomach muscles. Honestly, it did not hurt the look of my figure either. Long story short (too late), on my side that still curved in the girdle would try to bend in and flip up. Luckily my mom was a huge fan of shoulder pads in the 80’s and not a fan of throwing anything away. So like someone mentioned previously (small piece of malleable foam), the foam shoulder pad really did the trick. OK, and trick #2, maternity panel pants. If you love bluejeans and leather pants and all the other tight things that make your butt and legs look great but are killer on the waist when sitting down for hours and hours, they really work! It may take a bit of pride swollowing to try the first pair on and you will also want to make sure your shirt is long enough in the front to cover up the material change. But in the long run if it works, nobody else has to know what makes our lives doable and fashionable. You can buy plenty of pretty cute ones already made or a local seamstress can usually alter any pair of pants with the panels. But I would not try your favorite pair of jeans first. That is what thrift stores, and goodwill are for – trying new fashion alterations on the cheap. I hope any of that helps!
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I have broken 9 bones, if you do not count fingers and toes. Mostly ribs actually, sometimes the same rib. (If those driving you do not have excellent records and you wear a tray, bring a pillow.) I have had 4 documented concussions, probably more than that, but after you have had a few you know what to do and what to look out for if something goes wrong. Fortunately, nothing ever went seriously wrong with those. Strangely, the brakes usually had less to do with wheelchairs and transporting, than roughhousing, car accidents and maybe not the best decisions. The toes and fingers are definitely something that you need to be careful with when driving a wheelchair or existing in a wheelchair around people with backpacks at the right level (got to love middle school). When I was growing up, my doctors never really told me that I had brittle bones. So I played with my brothers like I didn’t. We broke my patella, femur and tibia in a transfer/wrestling match involving 2 of my brothers while getting into a van. I was 8; we were on a trip, and my dad was sure that it was just sprained. After moving it around all night (good for sprain, bad for a break), we drove home and it swelled up even more. A quick trip to the ER sent us back to a specialist (in the city from which we had just returned). After another 3 days waiting for the swelling to go down, so they could re-break the bones and set it, I received my cast. It weighed almost as much as I did at the time and it went from hip to toe. It took 3 people to take me to the bathroom, one to hold me, one to hold the cast and one to deal with the clothes. At that point, having older brothers came in very handy. That was a very long 3 months! When I was a teenager, we cracked my ankle trying to pop the front wheels of a rental chair (with no foot rests) up a step. I think it was a three-week cast on that one. Almost out of college, I broke my collarbone during a lift with a bit of a trip and an accidental bodily slam into a very metal potty chair. It was right before Tax Season and 80 hour weeks where no fun! But “you live, you learn, you bleed, you learn, you break, you learn”. Okay, so I added that last one, but I think the original artist would be okay with it. The important thing to remember is if we break we do indeed heal. Healing does not always feel like healing, sometimes it is like hurting. Anyone who has had to do a section treatment or a bronchoscopy or re-break a bone can testify to that point. But as the parent raising a child with SMA, you cannot always or maybe even mostly protect your child from the pain that their life will bring. You can comfort them, you can hold them (at least until they become teenagers and stop letting you… in public), and you can always be there to help them. However, maybe the most important thing you can do is teach them that pain is a message, one that they should listen to, but not one to fear. Being afraid to live (especially at a young age) will cause far more pain than any broken bone. Our bodies need to be pushed, use it or we will lose it. Truthfully, even after using it, we might still lose it, so enjoy it while it lasts. And as a physical therapist once told me, contractures come slowly over time and not from injury but from apathy or focus on other, seemingly more important, things. We will never be normal, our experiences will never be exactly like other people’s and we will always have to work harder to do the basic things that most people do easily. However, that is exactly the reason we should never be afraid do whatever we find worth doing, because who else could ever get that kind of enjoyment out of even the small things?
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I am not twenty-something, I am in my late 30’s. People say I never look my age, which might be a good thing when you have a child’s disease. When I was diagnosed with SMA type I, it was something you died of, not lived with (pardon the dangling participle). So I put off ideas and relationships until my twenties because honestly I had more important things to accomplish. I have had a few relationships now and I wish I could say something to Brianna or maybe my younger self. It is not that I know everything about intimate relationships, I have never been married and none of mine have lasted more than 6 months. But at 16, 18, and even 21 years old, knowing that those relationships were even a possibility might have helped me to be more confident. Because that is a huge part of dating and relationships, being confident! Believe that you have something to offer someone that is just as valuable as what they can offer you. No, we cannot offer the same things that most people bring to the table. However, we can offer something different. SMA comes with an IQ boost, (at least that is what they tell me after they give me my IQ score) as well as hypersensitivity. Both of those things can be incredible attributes in relationships. The brain is the sexiest organ. Imagine it! Most of us have been through a great deal. So using that empathy to understand others and their struggles can be very helpful. There is no Mr or Mrs. Right. We have issues, yes. 90 percent of them are probably physical. So we have to realize that anyone that is going to be able to understand us enough to get close enough to matter is probably going to have issues too. Maybe those issues will be physical (that might actually make things more complicated) but maybe they will not be. Maybe they will be emotional, mental, spiritual… but pain is pain! And pain is probably something that we can understand more than most, so use it. Also, find something for which you share a common passion. Passion can lead to passion. Common interest are what you have with friends. Common passions are what bring people together! I was lucky, I found out that curiosity was my passion. I wanted to learn anything someone could teach me. Music, art, comics, physics, human anatomy… I found people who had a passion for these things and their passion became mine. I had exactly the same romantic ideal as Brianna, someone to look past my physical limitations. But found myself not looking past anyone else’s problems. I am not saying scraped the bottom of the barrel, have standards and have reasonable expectations. Numerically, having a wheelchair, alone, drops us down to a 3 (a drunken equation I hashed out with a few buddies) but intellect, imagination, openness, and confidence (and maybe breasts, sorry guys) can easily get someone to a 5 or 6, depending on how much they have of them. So when looking for a partner, aim accordingly. Again, who am I to tell you about dating or relationships. I am just saying what I would have said to 15-year-old self. Maybe it would have helped. Maybe it would not have changed a thing. So after a very long 1st post, I apologize and accept your gratitude (see confidence). Maybe this will help you, maybe it wont, or maybe you are thinking that I am full of it. Let me know!