There are two things that everyone can do to support families affected by SMA: sign the Petition to Cure SMA and contact your Senators and Congressmen or Congresswomen about the SMA Treatment Acceleration Act. The Muscular Dystrophy Association (MDA) has a great advocacy web page that allows you to input your zip code and send an email to your representatives. It has a generic letter that you can adapt or you can type your own. Be sure to contact both the House of Representatives and the Senate.
Back to the Strong family. One of the recent posts on their blog was about Gwendolyn being social. This is one of the hardest things about SMA. The affected children are typically very bright and social. But you have to get very creative in order for them to "play" with other children without compromising their health. The Strongs' post covered that topic quite nicely. Here it is:
Gwendolyn is truly a social child. She has been since she was a tiny baby. During our first hospitalization when she was only 9-weeks-old, she showed no fear toward strangers, and instead beckoned every nurse with a sweet grin and a look that said, "Hi, come play with me." And she hasn't slowed since.
This is something we have struggled with since Gwendolyn's SMA diagnosis and something that all SMA parents have to constantly weigh -- risk of germs vs. social interaction and that ever present "quality of life" we try to measure. In the beginning, there was no way I wanted to be near anyone, but my baby had turned blue in my arms half a dozen times in two months and I just couldn't take any more. Because of my fear Gwendolyn had very limited contact with others or with the outside world, but soon we all grew claustrophobic. We started with walks on deserted streets, to parks where not a single person was currently gathered, at times when others were still at home. It felt good -- not right away, but each time we stepped out the door it became more comfortable. Slowly that gave way to pushing ourselves a bit further for Gwendolyn's sake and that felt good, too. As we started to come out of our shell shock winter hit and the threat of a common cold or the mild flu that almost everyone seems to get during that season shifted the scale again and so we hunkered down. It is not uncommon for SMA families to literally never leave the house in winter. And I can completely understand why. But, Gwendolyn is social, our social butterfly, and began demanding more stimulation. We continued our walks and as the sick season began to end, we started going to places like zoos and museums and even restaurants (usually at off times). But, Gwendolyn is ever-changing and so we are adjusting our barometer once again by doing more with other children. This is obviously a risk, little children mean little germies, but she so wants to be with her peers. She loves watching them play; when they laugh, she laughs; when they cry, she looks at me with concern. And she adores it when they stop their darling toddler busy-ness and come over to say hello, share a sticker, include her in the fun. She has a small group of pals that we now see on a regular basis. It makes a world of difference that I adore all of her buddies' parents and they understand our germaphobia and support whatever makes us comfortable.
Yes, sometimes being out, being social, pushing our boundaries makes me nervous -- make that I'm always a little bit nervous -- but we bring anti-bacterial wipes, try to minimize any obvious risk by avoiding crowds or places people go when sick (the grocery store is off limits), and leave if we are uncomfortable (I hear a sneeze from a mile away...not kidding). And, ultimately, if it makes Gwendolyn happy, we find a way to do it.
Isn't that what any parent wants is for their child, to be happy? Sadly, this horrible, terrible, awful disease makes that so much harder than it should be.
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