So here it goes. I have a breaking point. And so do you. Sure, it's not easy what we do. And people recognize that which is why we always get that one person who comes up to us in the department store or grocery and says, "I couldn't do what you do everyday."
Some days, I can't do what I'm suppose to do, either. In fact, there are days I'm just plain lousy at what I do and would be more than happy to leave this disability business behind me. Some days, I wonder what if I just decided not to do this anymore, climb down from this pedestal, and pedal off into the sunset. What if I just gave Elisabeth over to the State of Ohio and said, "Sorry, but I can't do this anymore." That's where my breaking point is, I guess. The day I operate out of my range of being human.
Remember, people like our children were institutionalized not out of convenience. People were institutionalized because it was stressful and difficult to keep them at home. In the old days, when children like Elisabeth were born, your doctor would arrange for your child to be sent to a special home. They did that because it seemed humanly impossible to be expected to care for your family while also caring for a child with special needs. And it wasn't that too long ago when it was suggested to me shortly after Elisabeth was born that I contact St. Joseph's Home. It was that easy.
The thought of Elisabeth being anywhere except at home was unthinkable. She's was just a little baby. How can you not manage a small, helpless baby? And the medical issues, I thought, will have to be handled one issue at a time. Isn't that what people do in the workplace and life in general? Take it one challenge at a time?
What we do everyday, keeping our children with special needs at home, is challenging. It wears on the family dynamic. It wears on the finances. It's stressful. It's like living with PTSD. Everyday. I see that from the newer moms and dads I've met through the DDX3X Syndrome network. Some of them are hearing the "news" after missing basic milestones in development. They don't realize they're grieving because they've already shifted into their survivor's mode. They have to because they're dealing with a little helpless baby. Period. But I see expressions of their grief and PTSD in their vents and rants about this special needs business that intruded on their life like a piano crashing down on their living room. They come oh-so close to that breaking point.
When people come up to me, to us, and say what an inspiration we are, here's what I want them to know. We are in survival mode, everyday, so I need them to advocate for Elisabeth and her friends to be her personal press agent. I need them to create an awareness about needing more resources, funding, and support for what we do. We need them to support organizations like Special Olympics, Down Syndrome Network, and United Way. We need them to support their school districts. We need them to support organizations that provide early intervention so adaptations can be made to our homes and bridges can be built into the community. I need them to contact their governor, senators, and reps to let them know what we need to keep our children at home and in the community because not everyone can do what we do everyday.
Or, so they tell us.
