Acceptance

Every year, every month, every day the internet and calendar is bombarded with awareness days of every type of physical and intellectual disorder and diseases. 

The month of August had us reading many inspiration stories of many of our SMA family and friends sharing their triumphs and tribulations dealing daily about life with SMA.

SMA Continues to be the largest killer of children under the age of two, but technology and modern science is providing hope daily for our families that's hard for some to understand. There is no cure today, but tomorrow who knows?

There are so many varieties of SMA and abilities of all those with SMA. It can be very encouraging and very discouraging to see a child with the “same number” doing things your child can't do. A number is something the doctors and researchers attach to a diagnosis, it is not how we label our kids.

As I have told folks about SMA, there is no cookie cutter type of SMA. 

With SMA you will observe children who have the cognitive abilities to perform with any Harvard scholar, but can't write their name due to the muscles in their body not working with their brain. 

Some-days you will see a child who is struggling to breathe or just survive every day, again due to their muscle weakness.

So I have people asking me what can your child do? How are they disabled? I'm shaking my head.

Most folks when they have a child, the first thing they ask is are they healthy, all their toes and fingers there, well our SMA kids have all their finger and toes. Most families are able to stop there as all they think about is there children are healthy.

Our children look like yours, they are like yours, but they aren't likes yours.

So what does our live entail that the other families don't understand:

• We as parents of children with special needs spend our free time (if you can call it that) advocating the government to get money so we can take care of them.
• We visit numerous doctors and specialist monthly, some in town and some far away.
• We go to endless IEP's (school meetings) so our children can get what they need.
• We advocate the schools to get speech therapy and occupational therapy in their classrooms.
• We fill out endless paperwork so they can get benefits that they are entitled to.
• We as a family turn their front doors into revolving doors for therapists.
• We open our homes and lives to strangers to become a part of our lives to help us.
• We want our children to go to a dance class or play soccer with a club. Instead we go to therapy and make special foods for our children and make sure they have the right clothes for the next day so they wont have a sensory outburst.

We don't get to the gym to work out as we work out everyday moving our kids from bed to their chair to their stander to their bath to their bed ... whew what a days workout.

Oh, and remember some of our kids have brothers and sisters that are unaffected and need your loving kindness also.

We are not negative people, just folks that are stressed out to the max, but loving it! Please accept us year around as positive people doing a fabulous job for our kids! yes they are special!

Awareness August has ended and most of you won't think about SMA until next August. 

We think and live about SMA 365 days of the year, sorry folks our awareness is ever present, so we have no choice but to show you SMA.

So what can you do?

We need acceptance. 

We need help – just ask us if you can help, cause chances are we won't ask you. 

When you see a special needs child take a look at how tired the parents look.

We love our kids. 

We love our jobs, and still care for our kids!

We love what we have to do, but we hate having to do it, yes we are tired, but don't get in our way.

A child with special needs will inspire you to be a special kind of person.

Just a few thought on SMA awareness till next August friends. ........Acceptance!