People who don't live in this world make assumptions and conclusions about our life which are often incorrect. These assumptions are generally not unkind, just uninformed. There are those who think our days are nothing but drudgery and sadness, but that is simply not the case. Yes it is hard work and yes it is every day, but those days are also filled with joy and laughter. That is part of the reason I write this, I try to share some of the joy of living in Maggie's World.
Thanks to the wonders of the internet and the universe in general, parents of disabled children have many opportunities to connect and share their experiences, good and bad. Because of Maggie, I have friends all over the country and in other countries. Some I know quite well, others I have never met. But, we are connected. As my friend Elizabeth said in this post yesterday, "We are all connected. All the time." That connection frequently amazes and strengthens me, and I don't acknowledge it often enough.
But there are a few realities of this world that can be extremely difficult. One of those realities is that disabled children often don't survive as long as their non disabled peers. Maggie has lost several friends over the years. I hesitate to name them for fear I will leave someone out. But we remember Isa, Rachel, Isabelle, Michael, Lueza, Michele, Elvis and others. We remember you and we miss you. Now there are more names to add to that list.
On Monday I saw that a six year old boy named Owen passed away in Seattle. I didn't know Owen, but I have corresponded with him mom for a couple of years now. Then I read Elizabeths' post about three year old Kerry who I did not know. Then yesterday it was August, who was 14 and lived in Florida. I did know August when he was a baby and reconnected with his mom several years ago quite by chance. (Maggie World: Chance encounters) Three children in 24 hours. Three families devastated. And reverberations felt throughout the interconnected special needs community.
As if losing their children wasn't hard enough, there will still be the well meaning but ignorant people who make comments that increase the pain. Comments like "it's for the best" or "how were they going to care for her" or, worst of all, "now they can have their life back" are so very painful. They minimize the loss and remove the humanity from both the child who passed away and the families' pain and grief. Their life included their child, the same as every other parent.
A child may have special needs that set them apart from other children, but the parents love and grief is the same as that of every other parent. It is unimaginable to lose a child. Any child. Every child.
I grieve for each of these children and ache for their parents. I am so honored to be a part of this connected community and hope each family feels the love and support from our network.
We are all connected. All the time.
I have posted this article once before. It is called "A Life Beyond Reason". It was written three years ago by Chris Gabbard, August's father. It is a scholarly and loving essay about being a parent of a disabled child. It is a wonderful piece and I recommend it highly.