Have you ever seen one of those lists of reasons why a toddler is having trouble going to sleep? I’m too lazy to look for one at the moment for direct quotes, but they include things like:
27. Toddler’s shirt is touching toddler.
42. Earth’s rotation is causing toddler to feel hungry, are there any bagels?
8. Toddler feels like dancing.
15. Toddler’s bed is scratching toddler. Toddler requires new bed immediately, yes yours will do just fine.
Those lists have always made me laugh, because having raised a toddler, I know much of this to be true. But I suddenly have a new appreciation for the plight of the small and somewhat helpless. When Rob puts me to bed at night, he settles me on my back, putting pillows under my elbows and one across my chest that my arms can wrap around. He fastens braces on my feet, and sets them against wedges that lean against a wooden chair which is kept in place by a leather ottoman. He stretches my legs and my arms and places my mask on my face. It’s a little more involved than our long ago life in Manhattan, when I would get up from the couch at bedtime and announce that I was going to bed. And then I would do that.
So now, when Rob is finished getting me set up, I have moments where I feel like the aforementioned toddler. Occasionally, I have to call him back into the room because my fingers are touching each other and there is simply no way to sleep with that sort of thing going on. Or I can feel the seam in my sock cutting into my pinky toe and this aggression will not stand. It’s ridiculous, and I know this, but when I try to ignore the issues, they just get worse and I have to call for Rob anyway. Evidently there is something about being put to bed that transforms me into your average three-year-old.
Rob finds the bedtime routine monotonous, and I understand that. It’s not my intention to add to the burden by coming up with outrageous complaints and insisting that I cannot sleep until each situation is rectified. But such is life when you can’t move your legs or your arms, and your daughter’s superman pillowcase is causing too much textured friction under your elbow. I’m sure that last one is universal.
I woke up this morning, and, after being attended to in a hairbrushing and contact-putting-in kind of way, I wheeled to Scarlett’s room, where I found her sitting on one side of the bed and Rob sitting on the other side. She was dressed in her school uniform, and was kicking the edge of her bed with her arms crossed in front of her.
“Good morning,” I said, looking at Rob. “What is going on in here?”
“I came in to say good morning, too,” Rob said. “And this is what I found.”
Scarlett often doesn’t like people to look directly at her in the morning, which I can understand. So I told her that I was going to close my eyes and see if any little Smurf wanted to climb into my lap to say good morning.
I closed my eyes. “Sad face!” The Smurf demanded. I complied, turning my mouth into a cartoon frown and doing a couple of little boohoos. I’m sure this is not recommended in every parenting book ever.
“Oh boy,” Rob rolled his eyes as he backed out of the room. Our daughter climbed into my lap and I opened my eyes and focused on her little body tucked against mine. The plaid jumper, the dirty blonde hair (I mean this literally. Her hair is really dirty, I don’t think it’s been washed since last Tuesday.) We sat like that for a while.
This is life right now. Moments of discomfort, moments of pure snuggly satisfaction. It’s sort of amazing, but when Scarlett is in my lap, I don’t feel annoyed that my fingers are touching, or that my foot is bent a little bit to the left. I’m just so happy to be holding her, even if the little sociopath did make me pretend to cry. I’ll try to remember this feeling of well-being the next time I get into bed and can’t stand the fact that my shirt has the audacity to be touching me.
Back to All Posts
I think you are an AMAZING parent! Who cares what the parenting books say, I don’t! And I love your whimsical way of relating to Scarlett too!
Great post Sarah. I can imagine your frustration. And I understand distractions helping. Visiting our 8-month-old “grandson” in Hawaii I was able to converse with him using only vowels. It was very enjoyable and I wasn’t thinking about my ALS. The reality is that I have regressed to 8-month-old speech and it is still regressing. And the rest of my body will follow. ALS sucks. Sending hugs.
Learn to meditate so the really little stuff (like your fingers touching) doesn’t bother you
And don’t be upset when it is not easy ! That is the hard part – practicing enough so it is easy. I find meditation hard with ALS. But I need that inner calm more,than ever.
I love you Ms. Sarah
I absolutely love your blog because often it’s like you are writing about my life. My husband gets asked to move my hand or fingers more than once every night until they are just the right position.
You have inspired me to try my to start my own blog.
Sending God’s blessings during this holy week. May you and your family experience God’s love upon HIS rising. Buona Pasqua.
I laughed so much at this…I’m getting to the stage where I need assistance in being “put to bed”, and I had a complaint just last night about my legs melting under my electric blanket, and when they touch while they are melting, I need them to untouch must faster than I can do on my own, because if they don’t untouch then they will be forever fused like a mermaid. And I can’t swim, so that’s not an option.
Thank you, as always, for sharing your life, and Ms. Scarlett, with us. XO
You. Are. Awesome.
Love, love, love the beautiful way you relate to Scarlett.
And no way does Rob find anything about you monotonous! Impossible.
Love to all of you!
Beth
I was just thinking about you Sarah-so happy to see this post even though it highlights the challenges of you being put to bed. I’m glad you have that little grumpy smurf, otherwise known as Scarlett to pull you through and make light of it all. I can’t give my girls a bath anymore so I hear you about the dirty blonde part! Goodnight!
Sarah this is such a real post! i thought i was the only one who demanded so much when i go to sleep.
You truly are inspirational and you have given so much insight and feeling to our condition.
i am in my 22nd year living with ALS and your posts motivate me. Keep writing.
Sarah , I know this disease robs you if so much . I understand your personal frustrations – I have seen similar with Carrey and her kids . I have also seen the smiles and joy when her kids ( especially the girls ) crawl into her lap . I picture you with Scarlett in your lap and smile . You are making the best of a difficult situation and I know it is not easy . I ask That God gives you and your family strength .
Sarah,
Your blog is the best ‘parenting’ book I have ever read … keep writing
Dear Sarah,
What a wonderful story! And, I agree with others: meditation is the best thing. I have learned to do it. Focusing on the breath as it goes in and as it goes out keeps the mind in a calm place.
Sending best wishes,
❤
I love this post. I love that you called her your little sociopath too. Your humor is my humor. I wish we lived close by I would come move your fingers for you.