Many thanks to Carrey Robinson Dewey for providing today’s guest post. Carrey first shared this on Facebook, and I thought it was so honest and enlightening. This is life with ALS: abilities—moments, really—are taken from us. Family life changes in ways we didn’t foresee and do not welcome.
It isn’t easy, and it requires us to shift our thinking every day so that we don’t drown in the reality of the disease. So that we can keep taking care of the people we love, even if we sometimes feel that we’re doing it from the sidelines.
PHASING OUT
Our morning routines have been nuts-o here at the Dewey household the past few years. In the morning, I wake up first, craft my edible art we call lunches, get the basic breakfast supplies out, cut fruit, empty the dishwasher, greet hubby when he comes downstairs, fix his collar, hand him breakfast, kiss him goodbye—finish getting lunches, backpacks, folders ready, find shoes, fix bedhead, stick a hair bow in, and a final “don’t forget to brush your teeth,” kiss them and put them on the bus routine!
That was all before ALS.
Now, I can’t make lunches—something I loved doing. I can’t cut fresh melon. Can’t get a carton of milk out, fix a collar, brush hair, or lift a dish. I really just sit at the counter and direct traffic, but I seem to get in the way. It stinks to say “I can’t” but literally, I can’t move my “naughty arm” up and can’t bear weight in my “good arm.” I guess that is what “faster than average” progression looks like.
Eric has been doing the morning routine pretty much since school started, and my ability to help has diminished over the past month as my “good arm” has weakened substantially. Leaving the house at 8:45 just isn’t sustainable for the rest of his career. He can do it for the short term, but this need in the morning isn’t going away for our family —ever.
We decided we needed to hire help in the morning. A need that, as long as the kids are young, we will always have. Consistent help. Every morning help. We found the perfect person willing to come for just a few hours and be my “extra set of hands” or my “assistant” during our morning chaos. I reviewed the morning routine: what I do, how I cut, where the lunch box supplies are, who gets what sandwich shape cutters, hair brushes, pony tails, and where all the necessary and critical equipment is to make our morning run smooth. I was excited we found someone fast that would still allow me to “control” the morning and direct traffic. This would alleviate all the stress we have in the morning, as well as enable Eric to get to the office at a realistic time. Yeah, perfect! Problem solved.
As excited as I was to interview this young lady and review our needs, my emotion changed mid-interview. As I gave her a play-by-play of what I do, that now SHE would do, I realized I was passing the first two hours of my “mommy life” to someone else and I would never EVER get them back. Those basic tasks of mine were no longer mine. Jobs, that while simple, I did with pride and love. These are now tasks someone else will always do for my family—always. Losing one arm was tough, but now, the second arm can’t bear much weight either. I felt as though I am training someone to take over my mommy jobs so I can phase out.
When Eric got home from work, he was eager to hear about the interview. I wasn’t going to share my feelings about our newest team member since we agreed to “outsource” my tasks. I wanted it only to be positive, but he could tell my excitement wasn’t what it was earlier in the day. I cried and explained my unexpected emotion of how I felt I was phasing out. After a long, head down pause he tearfully replied, “I guess you are…..”
Because really, I guess I am.
I absolutely appreciate this sweet girl taking on this critical role in Team Dewey, I just didn’t expect this side of the emotions to overshadow the “Yeah, Perfect!” excitement I had felt days, even minutes, earlier. Moving forward and not looking back—blessed to have her!
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You’re phasing out the practical, the functional, certainly not the mothering.
I don’t have ALS and the day I hired my cleaning lady after my daughter was born, I didn’t know whether to pay her or marry her. I tell anyone who will listen that if I won the lottery I’d have more staff than Downton Abbey. I wouldn’t cook, make dinner, wash clothes or clean the litter box. And my four-year-old would be thrilled. More time for mommy to focus on HER. My daughter NEEDS me to listen to her incessant chatter, rather sweet stories. She NEEDS to sit in MY lap and “read” Sleeping Beauty. She NEEDS me to lie down next to her and “hold handy” as she drifts to slumberland. She NEEDS me to comply with her frequent demands to “watch this mommy” and she NEEDS me to sit patiently while she “brushes” my hair and gives me “injections” from her Doc McStuffins kit.
Maybe I’m minimizing what’s important to you. If so, I’m sorry. My intention is to remind you that functional tasks are a part of motherhood by default alone, not design. And they can be done by anyone, without the pre-requisite of motherhood.
Kids don’t give a damn who washes and puts their socks away. But they care DEEPLY about their moms being PRESENT – for the attention, for the affection, for the sounding board of their incessant chatter – for that deep biological connection to the most important woman in our lives.
You can’t backfill that spot; it’s yours alone.
Part 2–
It’s Only Physical
Phasing out is only physical. It’s a fact, ALS is taking over my body physically; my nerves are slowly dying as are my muscles. It’s my reality. However, this disease will NEVER take my mind, heart, spirit, love or faith. These are all solid and thankfully, those are not controlled by nerve cells!
Don’t get me wrong, I am slowly phasing out of what I do only physically, it’s the cruelty of this disease—and sometimes the reality can be emotional. Not only am I phasing out of the insanity of our school morning routines, but I’ve already phased out of my abilities to dress myself, cook in the kitchen, do cartwheels (well, I never could do a cartwheel, but you know what I mean). I do however, participate in all of those tasks. I plan meals most nights, pick out my clothing, write love notes in their lunch boxes, read bedtime stories, and make the grocery list—heck, I even chaperoned a field trip with my kindergartner today! I am not going anywhere soon. I still “run the ship and will remain at the helm” as one posted.
My amazing friend Sarah, a fellow MALS (mom with ALS) even used my post from yesterday on her blog today —speed4sarah.com Why? Because she understood the reality of every word I said, because not only is it MY reality, it’s HER reality too and the reality every person with ALS….just phasing out physically.
Your replies to my last post were awesome and inspiring, I cried and laughed and felt so loved. I wanted to reply to each of them. Team Dewey has some amazing cheerleaders on board!! I agreed with much of what you all said, and wanted to assure you—it’s only physical. Love you all!
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This post made me tear up. Tasks I take for granted being able to do are something you really miss. I am praying for your strength and continued perseverance. You will never be phased out as a mother. Only with physical tasks that anyone can do.
Let me correct that… Only with physical tasks that a hired hand can do.