Sunday, March 14, 2010
Multiple Sclerosis Awareness Week 2010- The Family
As we come to the end of Multiple Sclerosis Awareness week 2010, I felt I'd be doing a grave injustice to the family of those with MS if I didn't do a post on them. Their road isn't easy either, in fact it's incredibly helpless and frustrating. In some ways, I think emotionally it may be just as hard as it for the person who has MS just in different ways. It's funny, I have MS, and I often think to myself "I can handle me having this, but please God don't let my children develop this disease. That would be more than I could handle."
I often put myself in my own parents' shoes, and honestly it breaks my heart. I can only imagine the immense pain I'd feel watching one of my own children go through what they are forced to watch me go through. As a parent, you can't help the fact that urge to 'fix' whatever is hurting your child never goes away. It starts when they're little and take their first tumble. You pick them up, brush them off, kiss their boo-boo, and slap on a band-aid whether it's actually needed or not. When we see our child cry tears of pain whether it's physical or emotional, it breaks our heart, and our instinct to make that pain stop is so strong it can be almost overwhelming. I see my own parents go through this with me now, and I know how hard it is on them to watch me struggle with this disease as I do. I know they love me very much and would do anything in their power to 'fix' this, and I know how helpless they must feel because I can't simply 'be fixed'.
It's also extremely hard on the spouse of those living with Multiple Sclerosis. My husband has been through a lot over the last two years. He's not only had to watch me deteriorate, but he's had to pick up the slack in the household because of it. I'm lucky, not everyone with this disease has a spouse that willingly (without ever uttering a single complaint) steps up and does all the extra things that mine does. I can't even imagine what it must be like for the spouses of those far more effected by the disease than I am. They are forced to become the caregiver and nurse, a role no one expects to take on when they say "I do".
Being the child of a person with MS is also extremely confusing and scary. They struggle to understand what's happening to their parent, and very often fear losing them. When I had to tell my own children I had MS, it was right before my daughter's 14th birthday. Her reaction was one of fear. She immediately blurted out, with a look of panic in her eyes "You're not going to die, are you?" I reassured her as best I could that MS wasn't going to kill me, but it took awhile for her to really believe that inside. For her, MS has taken away the mom she once knew. She remembers me healthy and active, and though she never complains I know she misses 'the old me' that would run around non-stop with her. It's kind of funny, because she actually likes it when I go on IV steroids, because for a few days she does get a glimpse of the way I once was before MS decided to become the uninvited guest who never leaves our household. As for my youngest, he had just turned 6 years old when I was diagnosed, and for him it was a delayed reaction. For months I thought he was fine with me having MS, then all the sudden when day in the car he asked "Mom, how did you get MS?" I paused, realizing I was in difficult territory. How do you explain to a small child what adult researchers don't even know the answer to? Of course his next question was "Am I going to get MS?"- which literally made my heart sink. Again, how do I answer that? I decided to risk a white lie and try to ease his mind "No baby, you're not going to get MS, you'll be just fine". Even as I spoke those words to him, my brain pleaded with God "Please, do whatever you want with me, just don't let my kids ever get this". It's not easy for either of them having a mom with this disease, and I'm under no illusion it'll ever get any easier for them either.
Even having a sibling, grandchild, cousin, nephew, or niece with this disease is very hard. Having a huge family, I've seen the gambit of reactions in the time since I was diagnosed. My brother, for instance, took it very hard. It always makes me laugh how my 'little brother' has somewhere along the line switched roles with me to become the protective one. I'm fortunate to be able to call my brother one of my best friends as well, so for him having to watch me struggle through this has been very difficult. MS is one of those things in life he can't protect me from.
So to the family of those of us with MS, know you're not forgotten. To my own family- My Mom, Dad, Andy, Wayne, Morgan and Joshua- thank you for loving me and supporting me through everything that comes my way. I wouldn't do nearly as well as I do without all of you in my life, fighting this disease by my side as best you can.
Be well all :)