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Tuesday, June 30, 2015

My Only Hope is to Outlive Him

Yesterday I had another blog flooding my mind.
I often go on rolls like this when it comes to blogging, thoughts flood me and I write feverishly for a few days or a week and then its gone and my mind rests.


I had woke with a thought that only parents of special needs kids can understand, the pain and desire of wanting to outlive our kids. 


I'm not sure why it ran through my head, I remember thinking "only my friends, who also have a special needs child, would understand." Then as I waited for Teale's day camp bus to return, my friend said it. She and I were talking about our kids and who they have in their lives. I shared the fact that Gwenn was truly wanted, but Gwenn was also a tactical move in our life. The thought of Beau being alone with Teale after we were gone seemed unfair. Beau would need a sibling, someone else who understood and could help with Teale's care. I also wanted Beau to have a typical sibling to have a relationship with. I know Gwenn is aware of this, she was a risk, both my births were rough and I also needed her. I remember the moment I said it to Mark, "I feel like I will always regret not having a third." Mark being Mark, was slow to respond, but thoughtful, "I don't want you always living with regret." Gwenn has been both a blessing and one of my biggest challenges in life with Teale. Their relationship is practically nonexistent right now. There is hope it will improve with maturity, but Teale is just awful to Gwenn.

So as my friend and I waited for the bus, we chatted about our unique families and the challenges we face. She talked about how out of sorts her son is on "down times from school." I told her how Mark has said for years, he would rather work seven days a week, if it meant Teale was in school seven days a week, because weekends can be just that tough. We talked about how most people live for vacations and weekends and we live for school/work days. Then in our conversation about who will be there for our kids as we age, she said it ~ "My only hope is to outlive him." I wasn't shocked and told her I think the same, but this could "only" be said by parents like us, to each other. My typical friend parents are probably cringing right now, in shock we actually discuss such things. I said ~ "Yup, I don't trust the world with Teale after I'm gone."

I bet if you are a parent of a typical kids, you have never had such a thought. Sadly we both truly believe it is rational. This is one of the "things" that haunts us. We live with the fear of what if and what if "not." 

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