I have been trying to write this post for a while but...I've been too tired!! One of the things we have to deal with on a regular basis as Elin's parents, yet never really take the time to stop and consider, is prolonged sleep deprivation. Apparently, sleep deprivation is extremely common in children with profound and multiple disabilities. There has been a report by Family Fund, a charity for families of disabled children, which states that 93% of parents of disabled children are up in the night with their child. 49% of parents experience health problems due to lack of sleep. 22% experience tiredness at work and 11% of parents have relationship problems. None of these statistics surprise me. Something that completely blindsided me as a Mum of a severely disabled child was the sleep deprivation. This is because it was largely unexpected, unspoken and there is not a lot of information about it. We were told when Elin was tiny that she would never speak, walk or even see properly. We were told she would be in and out of hospital a lot. We were told her health would be extremely precarious and that we would be lucky if she reached adulthood. We were told she would be on many, many doses of medication daily (thirteen if you are asking). We were told she may not ever truly 'know' us, that she would be tube fed, incontinent and suffer form seizures her whole life. But what nobody told us (and given the seriousness of that list, it certainly pales in comparison in terms of severity I guess) was that she wouldn't sleep. Now, Elin has never slept. It's nothing new. In the early days we had so much to consider, worry about and mull over that the sleep issue was never top of our list. We took her to a cranial osteopath at three months old and it helped a little but it was far away and the journey would upset her so much it almost wasn't worth it. Then, she was admitted to Alder Hey at four months for an operation and they prescribed sleep medication that seemed to help a lot. Suddenly Elin went from sleeping two hours a night to having a relatively 'normal' few hours at a time. We were still up about twice a night, but she was a baby, this was normal, right? Seven years on and absolutely nothing has changed. We often say if we had not been to Alder hey when we did then have no idea how we would have carried on. Paul couldn't even go to work it was so bad. So, the new version of our nights involving only getting up two or three times to Elin seemed like a massive improvement and we didn't complain, we just felt lucky we weren't the walking dead anymore.
But...when this goes on for years and years it can be very difficult. You get used to it, of course. But then when something knocks Elin off kilter, such as an illness, the whole sleep patterns gets lost into the realms of newborn again. Except maternity leave finished six years ago and life has to go on, for us and for Elin. At the moment we are stuck in one of those patterns. Following Elin's illness some four weeks ago she hasn't had a single good night. This means being up three or four times and eventually giving in. Giving in means she comes into our bed, which usually does the trick and she falls asleep. Only ever for an hour or so, then another wake-up. A shift of position or a cuddle and you might get another half hour out of her. I thank my lucky stars she's still small enough for us to carry into our bed. I dread to think what we will do, short of winning the lottery and buying a kingsize bed with a hoist over it, in the future when she has a 'bad run' of sleep. Anyway, suffice to say Holly Cottage has been a very sleepy little hollow lately. I hear myself telling people I am tired and think how pathetic it must seem. Nobody likes anyoe moaning that they are tired. But even the word 'tired' doesn't really do justice to how you feel. It is exhaustion, more probably. The exhaustion of having the strange combination of a seven year old with the sleeping pattern of a seven week old. She still needs medicating, feeding and nappies changing too of course and that can add an extra layer of complications when trying to ensure she has a good few hours.
What's not helping Elin at the moment is thats he needs an ENT referral - I am convinced her sinuses- like mine- are blocked. She also has a strider (when wind passes over the larynx creating a squeaky sort of noise) which can be very noisy at night. We are wondering if her teeth are coming through behind her baby teeth and part of us is also wondering if she is being a little monkey, frankly. We will never really know what causes the increased sleep issues at any one time, we just have to hope they won't last long.
The only way I can describe how I feel sometimes trying to deal with this prolonged lack of sleep is that I feel like Im walking underwater. Everything feels slightly distorted. Everything is out of proportion, including my emotions.I will cry at the drop of a hat. Work becomes something to survive, rather than enjoy (yes, I normally enjoy work -most of the time anyway ha!!) . Meals are not cooked -Paul is the cook but when sleep deprived he rightly doesn't feel like chef duties! We share the lack of sleep in our house just like we share everything to do with Elin . You eat fast unhealthy food and feel bad because of it. The house is not tidy, phone calls are not made, texts are not sent and things are forgotten or just sidelined due to lack of energy or required brain function to complete a task. The internet replaces a beloved book as a comfort and escape, because there is no concentration left in you and it feels easier to swipe over stories about Kim Kardashian than it is to escape into a truly enjoyable world that might actually take your mind of things better than stimming on an iPhone screen ever could. There is a constant sick feeling in the pit of your stomach which sometimes affects you physically (I won't go there) and you feel like half the person you know you can be, with the face of somebody twice your age. Going for a run, which usually makes you feel good, renders you incomprehensibly shattered. You start to feel lifeless. But you have to keep going. Work, social stuff, Elin's appointments, shopping. None of it is going to go away just because you're not getting any sleep. All I can say is thank god I only work part time, there is simply no way I could get through it all otherwise. I can totally see how the stats at the start of the blog have come about. Support and understanding, not only from each other but also friends, family and work colleagues is paramount in retaining your health, sanity and relationship. Thankfully, it is undoubtedly this support, in all its forms, that Paul and I have. We are very, very lucky in that respect.
I'm not telling you this, lovely blog reader, for sympathy. After all, like I said it's been something we've been living with for seven years. Sometimes you forget about it completely, because it is simply the norm. When you've so many things to think about and worry over, sleep is often bottom of the list when talking to doctors, professionals and even other parents. Im just telling you simply because I know you read this blog to understand, and I want you to understand, a little more about life with a child like Elin. That means the many positives and the negatives too. Also I want you to forgive me. Forgive me if i forgot to return the call or the text. Forive me if i snapped at you a little or I didn't talk much today. Forgive me if I had to leave the party early, or I couldn't drag myself out for the girls night. Forgive me if I can't always give you good advice about your own problems because I do care. I DO. Really. I just don't have any space in my brain left sometimes. At all. I can't form the words, I can't link my brain to my mouth.( I become, at the very worst, something the old me never would have accepted- I become a bad friend.) This is not an exaggeration, it's the absolute truth. I'm just trying to survive the day. And sometimes, as insomniacs will tell you, that's all it feels like you are doing. Surviving.
This was taken at 4:30 a.m in our bed. Monkey!!!
NB In case you are wondering, as I know you will be Elin fans, how all this affects Elin, well...it doesn't seem to! She has been one happy little bunny the last couple of weeks. That, at least, is a blessing and a silver lining in the cloud that descends over our little cottage at night time. Would that we could have her stamina!! Anyway night night for now, please keep your fingers crossed for us that things change soon or I'm going to have to start saving for botox, sharpish. My eyes have more bags than Manchester airport. Thank you, friends, for the continued support. May your sleep be long, uninterrupted and peaceful for as long as you need it to be :-)
