Just last week I had the privilege of standing with Wade and my friend, Carrie, the social worker for his Cerebral Palsy team, virtually as we recorded a talk on Caregiver Stress for the upcoming American Academy of Cerebral Palsy and Developmental Medicine Meeting.
(Never mind that this meeting was to be held in New Orleans and Wade and I had been planning for years the fun restaurants we intended to take the team to...but alas Covid means the entire thing will be virtual.)
My point is not to grieve a trip to the Crescent City (though I am grieving), my point is that the information on the unique stress for caregivers is fresh on mind. The data, the statistics, the tools for working through and around it. Fresh. On. My. Mind.
Carrie does a beautiful job explaining how in parents of children with special healthcare needs, the baseline mental health level is one of stress. And while I have struggled for years to accept these words, to own them for myself, I think it is important that I say: The baseline level of stress in our home is a high baseline. High.
This does not mean that joy is not pervasive. Oh goodness, we have so much joy. This does not mean that our family doesn't know how to have fun. Do I need to post some Mickey-Mouse-Ear-Clad-Shraders to remind you of the before-Covid times and the fun this family has together?
But the bottom line is that when your baseline is already high, any added stressor can make life feel catastrophic. For example, a tornado ripping through your yard might cause you to be completely stressed out and overwhelmed. A pandemic that kills hundreds of thousands stresses every one out admittedly but for the family with special healthcare needs already, the stress can paralyze.
I am not saying all of this because I need your pity. I do need your awareness. I have threatened to make t-shirts.
All of the data, statistics, coping skills are fresh on my mind. But yesterday, we hit a snag with Benjamin's care team. The details are not important except to say that this is hard. Trusting someone else with your child's care is hard....even when child is a grown adult. Having care providers in your home several hours a day, often with nothing to do but analyze every move you make is hard. Making sure the young adult who has never done his day to day care himself knows how to articulate his needs is hard.
And yesterday I forgot all the coping skills as all the hard spilled out of my eyes. And when I had dried them off, when I had received comforting texts from Philly (my Claire), South Carolina, and Mississippi (Thanks, Tupelo Girls!), and when I was ready to go forth again, the hard spilled out once more. And so I pounded out a run on the treadmill, hoping that would be the thing, but the hard spilled out again. And when I cleaned my face and got my shower and dressed to take my favorite 14-year-old to get her ears pierced (Again. You will have to see the PowerPoint Presentation involved in convincing us to do this!), and my new friend said she had heard it was a rough day, stupid hard spilled out of my eyes again.
And then young adult -- who is not stupid and not the reason for my tears -- felt like he was in fact the reason for my tears. And so we talked and discussed and brainstormed. He too feels the absolute weight of trusting people who aren't always trustworthy, of course he does. Of course he feels it more than I can even imagine. He feels the weight of having to count on people who don't always fully embrace the role he needs them to embrace, who can't understand that there is more to this job than simply serving him meals.
I got a call today asking for a reference for a former care attendant during our time in Mississippi. I may have been a smidge over-exuberant as I recalled how this attendant could think for herself in times of crisis, how she had initiative to go the extra mile, to do the task I had not yet realized needed doing, to brainstorm for the most effective manner of providing Benjamin's care. Oh how I miss our Mississippi team.
But today, I got to serve as Benjamin's attendant as he worked for his Senate candidate during the Delaware primary election. That he was incredible is not a surprise to me. But listening to him as he talked to voters, I was once again reminded of all of his gifts. Benjamin's worth is not limited to his motor skills. His worth is not dependent on an attendant.
Benjamin is an intelligent thinker, an avid researcher, an articulate speaker, and a charismatic communicator. I watched voter after voter stop and just listen to him today. I watched voter after voter return to the parking lot after casting their vote and thank him for the education he offered. I watched as voter after voter assured him they had in fact voted for Jessica.
After a hard, challenging yesterday I am so thankful that today reminded me of why we fight for Benjamin's rights, why we fight to hire the right team, and why we fight to ensure he gets to chase his dreams.
I don't know how his candidate will fare across the state -- she is the underdog for sure. But I do know that I will cast my vote for Benjamin all day long in the race against all the hard things this life has to offer.
And any other race he chooses to run.
0 comments:
Post a Comment