Maggie was kind of a big deal!

Maggie was kind of a big deal!  This is a bold statement.  I think as parents, we all think our kids are big deals.  I know all 3 of my kids are.

So why was Maggie a big deal? For one, Maggie had this crazy gene that mutated. When people asked why she had disabilities, I would simply reply, "God said". I always felt this in my heart and soul.  Scientifically, there is a lot of information that goes into the specifics of Mag's disabilities.  To be specific, it was the STXBP1 gene. It's official name is "Syntaxin binding protein 1". This test wasn't offered until we went to Children's Hospital in Cincinnati. We had genetic testing at Nationwide Children's and Cleveland Clinic, but we couldn't afford to pay the hefty $56,000 price tag that came some of these genetics test.  When we were getting Maggie's 3rd opinion at Cincinnati Children's Hospital, they informed us that they would eat the cost of what insurance wouldn't cover.  This also allowed Maggie to become part of their research studies. We were excited because we might get an actual reason for Mag's seizures and delays. Low and behold, Maggie tested positive for a gene mutation.  Since Maggie tested positive, the genetics team suggested Scott and I get tested too.  This would also allow us to find out if Dan and Mary Kate need to be tested. Scott and I tested negative for the gene mutation.  The Genetic counselor explained that at least one parent is normally a carrier.   Neither of us were.  Here is a crazy thing.  Maggie is 1 in 3 in the world, that has been tested and had this gene mutation, autism, Lennox Gastaut Syndrome and parents who were not carriers of this gene change. 1 in 3! Maggie was made exactly the way God intended.  We always knew this.  This was another sign that God is always in control.

It took 14 years, several doctors/specialist, 3 hospitals, and one very specific genetic test to find this mutation. Why did it take so long? Good question.  I think part of the reason it took 14 years to find out that Maggie had a gene mutation, was that we had to travel on the journey God intended.  It was a painful journey and it still is.  I truly believe that God wants me to fight for kids who may not be able to fight for themselves.  Maggie made me a better fighter.  I hope I can continue helping others the way God intended. There are some days, I don't have a lot of energy to fight.  I can barely get out of bed.  I just want to hide under the covers.  But, I get up, get to school, and encourage my students how to be advocates for themselves and others. I hope to spread love and kindness the way Mag's did everyday.

Another way Mag's was a big deal, was because of her donation and continuous contribution to research.  She is still helping research through her donation.  We know that Maggie's rib is being used in a study to make children's safety restraints safer.  Her cornea donation gave 2 men the gift of sight in New Zealand. In a way, Mags is seeing things that we only dream of.  So yes, Maggie was a big deal!

It's been 3 months. 3 months without belly bumps and nose kisses. 3 months without my snuggle buddy. 3 months without my funny teenager to make me laugh as we took pictures using our Snap Chat. 3 months...