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.

Monday Monday

Monday morning. Those words tend to elicit a groan, but not for me and definitely not today. We had a very busy weekend and I welcome the quiet and routine of the workweek. My husband?s 50th birthday was this weekend. We had a huge party on Friday night and a few relatives and friends stayed all weekend. The house is a mess, there is no food in the fridge and there is a mountain of laundry. I have work projects that I put off until after the weekend that are nagging to be completed. Right this minute, though, Maggie is off to school, Tim has gone to class and Steve is backpacking. The house is quiet and I am enjoying it.
In addition to all the revelry, Maggie and I went to a playground to meet up with Tammy and her kids. Tammy has been telling me about this great playground at St. Mary?s Park* that is accessible for wheelchair users and other kids with special needs. I was skeptical because I have been to these parks before. The efforts at access are commendable, but barriers still exist. Ground cover that isn?t wheelchair friendly, access to the top of the slide but not the bottom, things like that. Playgrounds exist for children to run and climb and making them accessible for those who cannot run and climb presents unique challenges.
St. Mary?s park was the best I have seen. It is build on the side of a hill and the main structure forms a bridge all the way across the playground. The bridge, wide enough for a wheelchair, branches off into several activities and a wheelchair user can take advantage of many of them. At 15, Maggie is too cool for that stuff, but I could see how much fun she had just crossing the bridge.
The design of the playground was good, but it was not the best part. The access the park creates is more than just architectural. It provided access to typical childhood experiences. Watching the kids, both typical and special needs, play with one another was heartwarming. There were several families enjoying the park, including a group of parents with their special needs kids. That made my heart soar. Their kids, all little and playground age, were enjoying the playground and the socialization with other kids. Their parents were enjoying the socialization with each other. This playground is serving a huge need right there. The isolation for parents of special needs kids, especially in those early years, makes a difficult situation harder. These parents have each other. Instead of meeting in the waiting room at the neurologist office or in a formal support group, they are hanging together in a normal childhood setting. That is progress; it is something I certainly never had when Maggie was little.

*St Mary?s park is at Justin and Murray Streets in San Francisco, the playground is down the hill. The accessible entrance is at Justin and Benton Streets. In addition to the playground, there is a baseball field, basketball and tennis courts and a dog run. There is something for everybody. Check it out.