Sunday, October 9, 2011


I don't believe in a lot of things, but other things I believe in so strongly that the idea that they are up to chance, that it's all indeed random, brings tears to my eyes so quickly I can't breathe.  Today I learned another lesson to reinforce the idea that we will meet the people we are supposed to meet, when we are supposed to meet them, and absolutely everyone has a lesson to share if I'm willing to listen.

Here's my admission....It's easy to fight for kids, for children who have special needs to make sure they have schools that accomodate, nurture, support and a community that accepts, includes.  It's not easy, that's the wrong word.... it's definable. I know what that looks like, what it feels like. What I struggle with is what that looks like for the adult child. The child who has grown into an adult body but who themselves remain at risk. In need. But, with the ability to procreate, to themselves have children. What happens when a special needs child grows into a special needs adult and becomes a special needs parent? And then, what happens when that child has their own special needs? In this scenario, who's the caregiver? Who's the "responsible adult"? 

My heart breaks today for a mother who couldn't. Who just couldn't for a million reasons....  but couldn't.  My heart breaks for a society that accepts her failure and judges her as lacking, not contributing in a world she didn't understand. My heart breaks for the daughter of this woman who didn't grasp the significance of medical conditions that are rarely fatal if properly maintained, but today my heart breaks for a mother who's burying her baby girl.

And I don't understand how we could let this happen. I'm so angry and so hurt and feel so guilty. I feel so ignorant of what kinds of services are available to families like hers, and in my self-righteous indignance I demand change. What kind of change... I have no idea. I don't think that throwing money at the problem is the answer. That people with disabilities are given their SSI check and expected to manage that money, and the money for their household, just baffles me. Where are the supported living homes that are not just for the individual but for the family? I know how much I depend on my friends and family, my community to help me work through things, get through things, every single day. What kind of support network did she have? She was raising two children on her own, with financial assistance sure, but little else. Why is this the best we have to offer her?

Today it's easy to identify how much I had to learn. I just wish it didn't have to come at such high of a cost. I'm so sorry... heart broken open... listening... learning. 

hug your kids/partner/pet a little tighter today, and the next time you see someone who fits this story remember the words of Plato and "Be kind, for everyone is fighting a hard battle."