Wednesday, October 16, 2013

For Owen and August and Kerry and so many others

 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.


  1. Thank you for.....well. just mentioning our Kerry in your post. She was and continues to be our Light. Having her name and story be lifted up in these days after we said goodbye means so much to our family, thank you so much. As I read about your days with Maggie, I saw how I hoped our life with Kerry would become...a routine, not always an easy one, but a life. Not to be, but she has changed us and I hope to honor her three years with us.

  2. Beautiful, Sally -- I am grateful for your friendship every single day.

  3. Kristen, I tried to respond to your comment, but I think it just went into the empty internet space.

    Oh I am so glad it makes you happy. I would never want to intrude or make you sad. She will continue to be your light. Shining. ever shining.

    I received a comment from Isa's mom too. Isa was also three when she passed away 15 or 16 years ago. Her light continues to shine. Kerry's will shine just as bright just as long.

    I absolutely love that picture of Kerry with the tousled hair. She looked like a sweet girl and a wild child all at the same time

    All my love to you and your family. Elizabeth is right. We are all connected

    Sally McDonald

    coghlanmcdonald at gmail dot com


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