When we talk about future caregiving for Elisabeth, both of her sisters say without any hesitation they will take responsibility. The idea that Elisabeth would live anywhere except with her own family is beyond their scope of understanding. They think this way because they know the way of the world. Both sisters spent a few years working with marginalized populations transitioning into the community. From their perspective, they think they can manage the caregiving responsibilities while also having their own careers as long as there are quality day facilities and community programs that parallel their working hours. As long as Elisabeth has access to funding.
For most of their childhood, I stayed home. I realized I couldn't "have it all" working outside the home and had no other options left because Elisabeth was aging out of her specialized daycare at Redwood Therapy Center and was ready for the school district and the world of IEPs, FAPE, and LRE. Elisabeth's needs grew beyond what I could do working full-time away from the home. She wasn't sleeping. She was requiring extra trips to the doctors, surgeries, therapies, and we didn't have the resources to hire a helper or nanny to care for her while I was at work.
It was a charmed life staying home. Elisabeth's dad seemed to be more relaxed knowing there wouldn't be anymore interruptions at work. And his job changed so he could have a little more flexibility as my back up. It was almost perfect, really. It was like all those prayers that people say on Elisabeth's behalf were all working. The girls all found their niches -- art club, music club. band, theater, soccer, softball, basketball, track, scouting, band, cheerleading, and community service clubs. Then they said goodbye to Elisabeth and went off to college to earn their degrees and their place in society.
Then, somewhere in this charmed fairy tale existence, things went awry. Suddenly the wear and tear of caregiving started showing and I found myself hanging from this very thin thread about to snap. The reality of her leaving her school community sunk in. The truth is, it's not easy being a caregiver full-time. So, when I started looking at her life after graduation, I began seeing the same anxieties and stresses that I see in other families like our own. We don't have to say a word because we know that "I know" look. We know. We can't do it on our own. We need help.
Today, I am scheduling a meeting with a reputable respite care center for adults like Elisabeth. I've watched other very strong and capable warrior moms do the same. It's hard. I'm making plans for Elisabeth's future because she needs her own independence. She needs to find her own niche and get acquainted with the staff and activities to bridge into community life. And her sisters need an option for Elisabeth, too. It's just something I know I have to do for all three of my daughters because I know the way of the world, too. And the way of the world for Elisabeth is that she needs her own community.
As long as we have funding for quality day and overnight respite facilities like Metzcor, Stepping Stones, and St. Joe's that are run by quality skilled-nursing and tender-loving care, I think Elisabeth will be just fine on her own when her dad and I age out of our caregiving responsibilities. Her sisters will still be part of her life and community bridge building, but they won't have to do it on their own.
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