Sleep remains a rare commodity at no.21.
Sleep deprivation certainly is a great form of torture, both mental and physical: although, I should admit, D is taking the brunt of it.
There are nights when the perfect storm occurs, when Eilidh is unwell and restless, Niamh is needy, D is working late and I am on call, but all we can do is baton down the hatches and ride it out, hoping for a few hours of sleep, dreaming of a night of respite. All too often I feel myself wanting to shout “just be quiet! just go to sleep! PLEASE…” and I feel like such a terrible mummy. Each time I want to shout I think of the book that my brother bought me for Christmas but knowing that other parents often feel this way too doesn’t make me feel any better. There is many a night when
"Bleary and dazed I awaken
To find your eyes shut, so I keep
My fingers crossed tight as I tiptoe away
And pray that you're f****** asleep."
but my prayers often go unanswered...
As the building work nears completion, we are ever hopeful that our sleep will improve as the girls will go into separate rooms. Niamh will need some tough love as we try to get her to sleep in her own bed for a full night – it’s been 11 months since she slept on her own, 11 months that she has slept cocooned in my duvet, 11 months that she has cooried doon, savouring me for herself during those night time hours. Her sleep will improve, I am certain of that.
I worry about Eilidh though and, in turn us. I don’t think that a new bed or a new mattress will make a difference – yes, she might be more comfortable but she will still be unable to move herself into a comfortable position so she will get annoyed and cry out, looking for us to turn her, to make her more comfy. Everyone dreams of a comfy night sleep, corried doon in the duvet; I worry that Eilidh might never achieve this. I read of others with SMA 2 who struggle to find sleep and I worry more, but – and I know that this is selfish – in truth, I worry for D and I. I worry that we will struggle with the sleeplessness over time; I know for sure that it affects my mental health and D is trying to protect me by taking on more of the responsibility, but that means that at times he struggles too…
I don’t know what the answer is - some tough love and perhaps a new bed - but for now we will continue to take each night as it comes, dreaming of (and praying for) a restful, peaceful night and hoping for some respite soon.