Fighting our battles

My 5-year-old son looked at me when I was tucking him in last night and said, “Mom, we really have to do a better job of flossing my teeth every day.”  “Yes,” I replied, “the dentist will probably yell at me again next month when you and your sister go for your checkup.”  In my mind, I thought, “just one more thing we aren’t doing as we should.”  *sigh* 

Parenting can be exhausting in general, but with special needs kids, sometimes you feel drawn in every direction at once.  I started thinking on it, though, and realized that my kids have a pretty good chance with their teeth – I mean, I have wonderful teeth that they may have a chance of inheriting, they brush twice a day, they chew a lot of sugarless gum, and they have little sugar in their diets.  So, we are not the best at flossing, and I only give my son’s mouth a cursory scrub once or twice a day to supplement his own brushing.  (And only because he’s in my face with his brush waving wildly at me going, “Eeeeeeeeeee”, while he sticks his teeth in my face)  This is not ideal, but I think they’ll be ok.  Worst case – they get a cavity, which is relatively simple to fix.  I will probably kick myself when and if they get the aforementioned cavity for not doing more flossing, but it’ll just have to do for now. 

The same goes for sun protection.  I was reading yesterday that we should all slather on high SPF, all over our bodies, every day (UV rays penetrate cloudy days as well!).  Well, I wear SPF on my face every single day, we wear hats and sunglasses regularly, and we slather the kids up when they will be outdoors for any length of time in the heat of day, but sometimes I just don’t do it and I know I should.  And, my kids look at me and say, “Oh no, Mom, we didn’t bring sunscreen!!”  Now, worse case here is very bad – skin cancer is no joke!  So, perhaps the moral of this is that I SHOULD worry more about sunscreen than I do, but, then again, this is a potential demon to face, one way out in the backyard that may or may not come to our doorstep.  Meanwhile, we fight daily the one pushing his way inside. 

To maintain spinal health is a challenge when that spine is healthy, but when it is curving and deforming at a seemingly constant rate, the fight is tiring and overwhelming.  Andy and I work every day to push toward even the perfect treatment of the diesase my kids HAVE and we still don’t hit the mark.  We do more than most parents of scoliosis patients, because, to us, surgery is a very scary and daunting thing – the demon in the house!  But, we are not perfect, and we need to pick our battles, plain and simple.  We need to spread around the protective barriers of all the other potential ailments as well as we can, but we need to focus our energy on the one in our house, and everpresent.  In other words – pick our battles, do the best we can, do a little more every day, and never keep striving for perfection.  But, meanwhile there’s life, and we need to live it and try to enjoy it without the everpresent feeling of impending doom.  I know it sounds dark and somewhat ridiculous, but it can feel that way when you’re swept up in it – trying to keep the children innocent to the potential that awaits them, trying to keep fun in the house, but emphasize that serious work needs to be done.  This is the tender and difficult balance, and all we can do is fight our battles, one by one, as they come, maybe pushing one or two feet ahead into enemy lines, if we can.

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Recognizing beauty

I was staring over the ball field today, the first time I sat still and just watched my kids in a few days, it seems.  I’ve been scrambling to change some basic parts of the design for the EmBraced In Comfort bodysuit to help “C” with some severe chaffing problems.  We are close, but when I get into those overwhelming design connundrums, I kind of shut down, the eyes glaze over, and I keep picturing garments floating around in front of me instead of noticing my children in front of me.  So, as I was sitting out on the bleachers, feeling the sweat trickle ever so slowly down my chest, I looked out and took a good look at my daughter.  Now, I have always thought “C” was a pretty little girl.  It’s not entirely just that I’m baised – I recognize that she’s pretty in her own right.  But, today she looked so grown up and pretty, that I thought, “Boy, she is really beautiful!”.  I try to always tell her how pretty I think she is, because most girls have issues growing up even without a deforming disease.  But, today I didn’t see that holding her back at all.  She stands tall and proud, keeps her shoulders mostly in allignment (evidence of all her PT work), she has long, strong, and lean legs, a cute button nose, and is starting to get a sprinkling of freckles.  I think she’s absolutely beautiful, and I hope as she grows up she can see that this disease will not prevent her from being beautiful on the inside AND the outside.  Her confidence, her sparkling personality, her joy – these are things that will radiate out to the world, regardless of if one shoulder falls a bit forward, or if a hump protrudes in her upper back when she bends over.  I hope she’ll see what I saw today, and I hope I’ll remember to tell her…and keep telling her, until she believes it.  I encourage you all to do that with your daughters, regardless of the shape of their spine.

The EmBraced in Comfort bodysuit and new Spinecor Comfort Shorts System

For those of you who have children in the Spinecor bracing system, you probably realize that they are starting to transition people over to the velcro comfort shorts system.  For a while, they didn’t make it small enough.  My orthotist gave me a larger one and I spent quite some time pulling it apart and making it smaller for my daughter.  But, now they make it in her size.  The only problem is, as usual, there is no easy way to use the restroom while wearing it (the hole they provide is comically small).  Also, the material it is made of appears to be very uncomfortable to have pressing hard against your skin all day, and my daughter wholeheartedly agrees.  Luckily, the EmBraced in Comfort bodysuit is a perfect solution and we were able to transition pretty easily.  I still have a few hurdles to overcome, like she still gets some chaffing where the brace rubs the small opening of skin under the pelvic strap of the bodysuit, but I got some pretty pink moleskin fabric in the mail today and plan to attach it to the inside of the brace in the inner thigh area to keep that part from chaffing her skin.  I also cut a very large opening from the comically small hole that I mentioned before and now I think we have a more comfortable system than before.  She wears the bodysuit underneath the shorts and when she needs to use the facilities, she simply detaches the Velcro on the pelvic strap, pulls it back, does her business, reattaches the strap and it’s as easy as that.  The bodysuit protects her skin on her leg from the uncomfortable, itchy material of the “comfort” shorts.  I think this system will increase effectivity because the shorts seem to “turn” less on her body throughout the day and we can keep the tension high on the straps to maximize effectiveness.

If you would like to try the bodysuit, remember, you can try it for free.  I’d love your opinion and I’d love to help your child (or adult) be more comfortable in their brace. 

The EmBraced in Comfort bodysuit underneath the new Spinecor "Comfort Shorts System"
The EmBraced in Comfort bodysuit underneath the new Spinecor "Comfort Shorts System"

Catching up

The past few weeks I’ve been so overwhelmed with my life that I’ve neglected to post.  I guess I was putting it off – there’s been so much turmoil that I couldn’t quite express it in words.  I had to keep living it and dealing with it before I could stop and think about it.  All families go through those times – the end of the year school trips and occasional onset of multiple doctor appointments.  Then there’s the Spring Cleaning, house projects, and family visits.  Well, we’ve had all that and more.  Many people don’t realize the all-consuming nature of having not one, but two children fighting a slow and sinister disease.  Not only do you have to fight the disease, but you have to constantly navigate the world of doctors and medical tests, alterations of treatment, having differences of opinion with doctors, researching to find solutions…it can be plain exhausting.  And, I’ve been caught up in this as both my kids have been undergoing a lot of medical and life changes.  Medically, I have “C” moving from one modification of the Spinecor brace to another, newer configuration (called the Comfort Shorts System – more on that in the next post)  Then, we’ve had “V” going for all of his initial tests, most importantly his MRI.  Meanwhile, school is ending, we’ve had two great class field trips to zoos in our area, multiple Girl Scout events, family events, and the ever-dreaded, but much needed and procrastinated Spring Cleaning (which for me goes all year).  Then there are the continual construction projects to finish refurbishing this ancient and enormous farmhouse (now four years into the project).  So, life has been overwhelming, but it’s been great, too. 

I’ve started to gain more of an appreciation for the every day with my kids.  I try to make more of an effort to treasure them.  You wouldn’t think that it would take much effort to treasure them – after all, it appears that I am severely blessed to have two such beautiful and intelligent children (I’m not baised, it’s just a fact!) 🙂  But, when I get caught up in the everyday tumult of my to-do list, I become paralyzed and sometimes numb to the emotions that one needs to actively “treasure”, so I forget to, or neglect to, or sometimes both.  But, when I was preparing to take “V” to the University of Michigan Mott Children’s hospital to undergo his MRI under full anesthesia, I started to feel those “crazy Mommy” emotions surface.  I was a bit of a wreck the day before – I worried about every little thing and, in the midst of that, started to remember what was important here.  My house will NEVER be done and will NEVER be clean, but if my baby boy can make it out of anesthesia without too many negative side effects and if we get the word that his spine is clear of tumors and cysts, then I can take that to the pleasure bank.  Luckily, he made it out of anesthesia brilliantly, sucking on banana popsicles and staying up into the wee hours afterward watching his ‘Chip n’ Dale’ DVD.  And, we just found out today that his spine was perfectly clear.  Which means, the scoliosis he has is the same that his sister has – it reared it’s ugly head early, it’ll progress quickly, and it’ll take daily and diligent effort to keep it at bay.  But, despite that struggle, he came out fine from yet one small procedure, and I’m grateful.  I’m grateful he’s well and I’m grateful for the reminder from my God on high that these are treasures he’s given me – not merely children, but sparkly little bundles of treasure.

My little treasure prepares for his MRI, blissfully distracted by his Grandma.
My little treasure prepares for his MRI, blissfully distracted by his Grandma.