Thursday, September 24, 2020

Hate is a strong word. Sigh.

"I hate this thing."

Benjamin and I were in the middle of his evening routine last night, when the words flew right out of my mouth. He was in the sling seat for his lift, but I had made some error that was allowing the sling to pinch his leg and other areas that cause considerable discomfort. I thought my frustration was with the fact that one year into this system, I can STILL have nights where I do something wrong.

Benjamin: "See what I mean."

And that was the cold water in my face I needed to realize how grateful I actually am for this system and so I attempted to correct myself:

"I mean. I mean, I just wish it were more user-friendly and that I didn't cause you pain when I am trying to help."

Benjamin: "You mean you hate that you need it. And you hate that I need you to need it."

Yea. Yea that.

For years I have stubbornly lifted Benjamin whenever he needed lifted. I lift him still when he needs to get from his bed to his wheelchair and back again. But the distance to his bathroom is further and so in an effort to maintain my health and keep him safe, we use the lift.

I am so grateful for the luxury of this means to meeting Benjamin's needs. Really, I am so grateful. But it isn't the easiest thing to use. At least, late at night when we are both tired and ready for bed, it isn't the easiest thing to use. And in my impatience with myself last night, I let my frustration spill out. I don't really hate the lift. Quite the opposite in fact -- it frees us up to hire personal care attendants without requiring them to be able to lift 125 lbs, it ensures that Benjamin is safely lifted from point A to point B, and because of that it alleviates a ton of anxiety for both of us! I do not hate the lift. 

But Benjamin is right. I do hate that I can't trust myself to forever do the lifting for him. And as wonderful as I KNOW he is, and as perfect as I believe him to be, I DO in fact have days where the grief of his cerebral palsy still chokes me. And so I have days where for his sake, I DO hate that he needs the lift.

Wade and I should be at the American Academy of Cerebral Palsy and Developmental Medicine this week surrounded by our amazing friends and researchers who are striving, studying, teaching in an effort to make the world better and brighter for my boys. Instead, the meeting is virtual so our talks have been recorded and are being viewed remotely all around the country. Wade has a ton of talks -- I am beaming with pride! And he and I led one on Caregiver Stress (along with the amazing Carrie Sewell Roberts!). But together, the entire Shrader family was part of a panel for the Community Forum that usually is held alongside the Academy. And if we can make lemonade out of the lemons of this pandemic, this year's entire Family Forum is being offered online to anyone who wants to click the link !! I am thrilled to be able to share! And don't think you even have to listen to the Shraders, this link is filled with amazing people who are true experts in the field of CP!

One of the questions presented to our panel was from a fellow mom on this journey, who asked how she can know when she has reached burn out. I tried to remind myself of my answer last night as I was feeling guilt over my reaction to that blasted sling:  "Really, you should assume at all times that you are stressed out. And with that stress in mind, give yourself grace."

I hope you will join in and listen!

You can click here for Community Forum!

Carol - The Blessings Counter

Tuesday, September 22, 2020

Vocab Tests and Prayer Time.

My schedule during this pandemic has been sporadic -- some days I have 12 different projects going on, and some days I am a blob on the couch willing myself to do SOMETHING productive. Little Red's return to school, albeit a completely different return than we have ever had, has at least provided structure for my day. I like structure. Structure helps me schedule the things that are most important, things like having an early morning time dedicated to reading my Bible and praying for the needs around me.

Today, my girl needed help with her vocabulary words so I abbreviated my devotion time to help her.And so it was that my prayer time after was a congruence of Bible scripture and vocab.

I had been reading about worth -- and how as Christians, our worth is directly linked to Jesus and his love for us. It doesn't matter if we are spurious -- Jesus loves us. It doesn't matter if we are mediocre or spasmodic. I mean we could even be a brigand and Jesus would still love us.

In a world where we shout at each other over social media and judge one another about politics and mask-wearing, isn't it comforting to know that our worth is not based on the validity or invalidity of our arguments? My worth is unchanged whether you like me or not. My worth is unchanged if I have a thousand readers here or two (my mom and MIL).

If you will excuse me, I have 36 more words to memorize....

Carol - The Blessings Counter

Tuesday, September 15, 2020

I vote for Benjamin.

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.

Carol - The Blessings Counter