Reza has slept every single night of his nearly 6 years beside at least one, but most usually both, of his parents. He doesn’t always do much sleeping–I’ve written plenty about that–but when he does sleep, it’s cuddled in our bed. (In my head I’m hearing Goldsmith crooning I don’t always sleep, but when I do, I prefer to cosleep…)
While I think this has had an incredibly positive affect on Reza, it also has been a profound source of comfort and connection for me too over the years. He always sleeps between my husband and me. Occasionally he would roll to my husband’s side, so when my husband came to bed he’d sleep next to me with Reza on the far side. In my sleep I’d reach for my son and he wasn’t there and I would panic! So now my husband always moves him into the middle if he’s rolled too far. It’s hard to explain, but I spent more than three years breastfeeding him through the night beside me, and now it’s been almost another three years just cuddling him. At this point the association of sleeping next to him and a sense of peace and wellbeing is so strong. I know he will need his own bed eventually, but I want to savor this special time while it lasts.
Gradually though, ALS has been elbowing itself in between us. It started with little things. It’s hard for me to grip the blanket and pull it over Reza and myself. So he began rolling closer to his Dad, since he knew Dad could pull the blanket over him the way he likes. My sweet husband solved that by tucking us both in under the blanket together. Then I started using a splint to keep my fingers from curling at night. This lost me the ability to use my left hand to rub his back or hold him.
More recently, I began needing to use a non-invasive ventilator (called a BiPAP) during the night to help me breathe while I’m lying down. You wear a mask with it, and mine is a full face mask. I’m mostly stuck on my back. With the mask on it’s very hard to side-lay while wearing it. This makes it hard to snuggle my little guy. I also used to love laying my nose gently against his head, inhaling his sweet scent as I slept. But now I have this big piece of silicon covering my nose and mouth. I miss side lying with my arm across him, my nose buried in his hair. But I still get to feel his warmth beside me, and now he reaches for me, holds my wrist gently in his little grip.
We did have one cute, funny thing with the ventilator. One night, I was laying in bed and having trouble falling asleep. As my husband and son drifted to sleep beside me, I noticed that both of them had synced their breaths with the ventilator breaths! It creates a very soothing ambient noise, and it seems no one can help but sync their own breathing to it along with me!
Lately we’ve been discussing bed solutions. Our mattress is on the floor with no frame. Originally this was necessary because Reza would fall off a regular bed in his sleep and hurt himself. But now it’s hard for me to get in and out of because it’s so low. However I am not able to climb up into and down from regular bed frame heights. I’m tiny myself, and with my weakness I can’t do it. So one option is to eventually consider a hospital bed that would be able to go up and down as needed, and we could adjust elevation of my upper body or feet etc as needed for best positioning. But if I go that route I will have to give up sleeping with my sweet angel, and my amazing husband. And I don’t think I’m ready for that.