Life is a battlefield. One long drawn out field of battle….add a chronic disease like MS to the picture and the battlefield becomes lengthier and full of unexpected twists, turns, dips, darts and arrows!
MS is a beast. Not just the disease itself but everything else that comes along with it. Pediatric MS – well that’s a whole different ball game.
Words I constantly hear from other parents who have kids with MS…
“Why is everything a battle?”
We battle with the schools…
We battle with the teachers…
We battle with the doctors…
We battle with meds…
We battle with the insurance approvals…
Battle! Battle! Battle!
All while trying to take care of our child!
Just when you think you have a handle on things, something or someone else throws another wrench in it all.
Yes, I know adults with MS battle many many things….so I’m not discounting that at all…Still, imagine the added heartache of this supposed adult disease wreaking havoc in the life of a child or teenager.
Now imagine these kids taking excessive days out of school to return to face their peers, teachers and yes, even bullies after fighting this disease. Some get behind academically – stressed out to keep up-compounding to MS and all its symptoms. Some have helpful teachers who are willing to go the extra mile while others have less caring one who grew up bitter and enjoy calling out the child’s “laziness” when the child tends to battle chronic fatigue.
Imagine doctors saying your kid is fine when you know darn well they aren’t…or tries to convince you the diagnosing doctor had to be wrong because your child is too young to have MS.
MS has always been considered an adult disease. Sadly, many professionals still have no idea what to do with a child who has MS. I know parents who can’t even get the diagnosis on paper because the doctor doesn’t believe kids get MS. Don’t get me wrong, I have nothing against doctors. Like everything there are good ones and there are some who should find a different career. But if it looks like a duck??? Ya know…
Some kids are without a disease modifying drug because well for one, they aren’t really for use in children but that’s another story another day…what if your doctor was only familiar with one drug so here are your shots 3x a week and I’ll see you in six months…what if you had to wait six months for insurance approvals for meds…or have state insurances that only approve this or that…but nothing close to the specialty care needed? And no pediatric MS doctors in your state?
When does the madness end?
Before MS, I was pretty chill….still am mostly. But, the mama bear in me has learned to put on some battle armor and fight with a roar. My kids are worth every battle fought. Unless, we educate doctors and schools, our kids will never get a fair fight. We need more advocacy, awareness, studies and research for kids with MS.
We’ve only been on this officially declared MS road with my kids for two years…Surely, this can’t be their forever…
Message & Music for the Master 