This week my mind has been opened to the world of caring for a child with non-life threatening medical issues. It sounds crazy to say, but I think caring for Gavin and his intense ICU level needs was so much easier. I’ve spent the greater portion of the week making phone call after phone call, faxes and emails and so many times I’ve been sent on little side trails that only make getting to my goal destination more complicated. Things are readily available to children who need then in order to survive — but I have to question — shouldn’t a little girls quality of life be just as important. I know I could get so many different opinions on this matter but I feel like I have the right to question — since I’ve now walked both sides.
The word lunatic keeps creeping into my mind this week — mainly because after making phone call after phone call — and getting nowhere I begin to feel just like that — a lunatic.
So I looked it up.
One definition of lunatic is, widely foolish. Oh. My. Gosh. — that is totally me — and I like it. After all, I think we all have a inner lunatic waiting to come out in one way or another. In the world of special needs and medically fragility, being a lunatic can really be a key element in your success. I’m learning that it’s just not about persistence — but pushing the limits. Just because it written this way and stated in that way means that it is accurate or best for your child. Before entering this world both with Angela and Gavin I remember taking my doctors/therapist words like gold — truth is, they are just humans walking the same streets as us and eating the same food we eat. I’ve learned that the best docs/therapists don’t want to hold our hand but rather push us to walk along side them in giving our children the best life possible — taking diagnosis and keeping them just that — a diagnosis and not a determination of life.
So today I’m embracing my inner lunatic and allowing myself to dream things for Angela, Madison and our family that the medical/services world may not assume to be possible.
After the death of our little boy, who died in 2009 after a life long battle with Mitochondrial Disease, we knew we wanted our family to grow. We decided to adopt — a special needs adoption. We wanted to give another child the same chance at an amazing life like our little boy had. We welcomed Angela into our home in 2010 to be come our little girl and for us to be her forever Mommy and Daddy! Angela is diagnosed with 1P36 Deletion Syndrome and has Cerebral Palsy and Cortical Blindness — basically, she’s a totally cool little girl! Learn more about our journey at www.gavinowens.com.