I am a wife, mom, sister, daughter, and friend. I do a lot of things well, and nothing poorly – I’m perfect after all! Just kidding, my life is often crazy and overwhelming, but it’s my life, and I rise to the occasion and get it done. This is just to chronicle some of those adventures.
I married my soulmate in 2004, followed shortly after with the birth of our daughter, Arwynn. A little over two years later, our baby boy, Asa, came kicking and screaming into the world. Things haven’t always been easy, and have often been messy and hard, but we’ve stuck it out, learned from our mistakes, and grown into stronger people from them.
When our son was diagnosed with Autism in December of 2011, we took it in stride. He was almost five years old, and we had always suspected he was different, so embraced the awareness of why he was so ‘quirky’ as we called it. Fast forward to January 2014, and we got dealt a blow we were not only not expecting, but completely unprepared for. Our son, our beautiful baby boy, full of fire, love, quirks, and awesomeness, was diagnosed with Duchenne Muscular Dystrophy. There is no cure, and it is, currently, 100% fatal. Our boy, who had always been delayed, and clumsy, had a debilitating neuromuscular disease, where the proteins that bind his muscle fibers together was coded wrong. The chain breaks pretty early on, so when we thought we were pushing him to make him stronger, we were destroying the very muscles that support him. To say we were crushed would be inefficient. In the months since, we have become advocates for learning about this disease, knowing that, aside from those affected, far too few knew about it. Explaining to others, and teaching them what we know, and the hope we have for the future isn’t always easy, but if we can get enough people to see it, and say that more needs to be done to cure it, maybe we can save the future victims, and their families. I will post a lot about Duchenne, mostly saying how much it sucks, but I will post more about my child, the person he is, not the disease. The disease sucks, but my boy rocks! His sister is pretty awesome, too, smart and sassy, full of fire and laughter, with a take no prisoners attitude when someone teases her brother. She is the little girl I wish all little girls were: strong, smart, and awesome.
Now, this blog isn’t ALL about my family, or Duchenne. No way, Jose! This is pretty much a diary for me, a for of release. When you are a special needs parent, you find that all of your old friends kind of fade away, so all the cool projects I undertake, I will try to share here – the good and the bad, and trust me, a lot of times, it’s not so good! I tend to have an idea, get a burst of energy, and give it a go, as my logical brain seems to think it SHOULD best work out. Sometimes, after a twenty minute project has spun into a three day project, I really wanna kick myself, so, instead, I will try to post here, so you guys can laugh
at with me, and tell me how stupid awesome I am.
Anyway, I’m not sure I’ll be as cool as some of the bloggers I follow (I ain’t got time for that!) but I’ll try to be real, and hope you guys like me anyway 😉