We are currently on day 10 of isolation as a family. It’s hard to think that we have another 3 months to go. I am trying not to think about it, but it’s hard not to.
It’s so blatantly apparent in the media, on your timeline of every social media account, by even looking out of your window and the fact you aren’t able to be out there – that this is all very real, very scary, and really hard work.
It’s hard for everyone right now. I am trying not to wallow. I keep reminding myself why we are doing this, how serious and important it is. Every now and then I waver and the reality hits me.
My child requires occupational therapists, speech and language therapists, nurses, care workers, consultants, dieticians, physios, teachers, teaching assistants, and many others. Right now her dad and I are all of those things.
The pressure is tremendous.
But there is something I am learning. First and foremost, we are her parents first. Children know how to push their parents’ buttons. Amy is a child before she is a child with cerebral palsy. She is so much more likely to react to us with honest frustration and anger than anyone else. We are her safe space. The feistiness and lack of compliance is strong in this one! She knows how to articulate herself without words. Her lack of words is compensated with sounds, movements, hits, kicks, shouts and all sorts. It’s quite alarming actually as she gets bigger. (Just as I typed this I heard her dad shout “OW!!”… No doubt a back hand to the face.)
Don’t feel bad for not being able to do activities how you expected.
Secondly. Hard as you try to be all of those people – it isn’t possible! Some days I find I struggle even to be myself, nevermind an untrained, unrested specialist! Amy does NOT want to read books with us. She doesn’t want to bake cakes, or paint, or do messy play. Any attempt we make at broadening her horizons is often met with defiance and distress. It can be very disheartening and every time we give in and let her watch youtube I feel myself failing her as her parent. I’m not a lazy parent. I hate youtube. I am sick of nursery rhymes. She would have them 12 hours a day if she could. It torments me deep to my soul! However sometimes, you do what you have to do.
I have to remember. When she is crying and shouting – she is struggling. It isn’t me that’s struggling. She is. I feel angry and frustrated and it hurts that in spite of my best efforts I can’t calm her. We have days like this a lot however the difference right now is that we can’t just go for a walk, or to the shops, or indeed anywhere. Every time I bring her in from the garden she descends into crying chaos. I try countdowns, I try “now and next”, I try giving choices/options, I try explaining why we have had to come inside. You can only try and that’s that. I too am struggling massively with not being able to leave the house. I am used to being in isolation in hospital during flu season, or being stuck home because Amy is poorly, but this is a whole new level. I often crave isolation – but generally by myself with my own choice of music whilst I get on with my jobs. Right now I can’t even keep on top of my jobs.
We have upped our game with PECS/PODD symbols. We still don’t know cognitively where Amy is at. Sometimes she shows great understanding and we know she’s incredibly clever. Other times she is distant and disconnected and doesn’t show she understands. Yesterday she chose “swing” as her activity several times. Today she wouldn’t choose between any of her symbols. I have to remember, if today was a bad day, tomorrow might not be, don’t lose heart. Dust yourself off and carry on. Her level of distress is no reflection of my ability or a parent. In fact if anything I am great in spite of how I am feeling.
I am trying my best and working so much harder than I ever expected to have to.
Have you seen the “rainbow in the window” thing going around Facebook? Children are painting rainbows and displaying them on their windows as a symbol of hope, and something to look out for on their designated hour of exercise. I tried to get Amy to do one. She reluctantly helped me do the red, then became very agitated and we had to stop. I finished it by myself, feeling a bit aggrieved that she saw something most kids would love, as some sort of punishment. I have to tell myself, it’s fine – she’s not into crafts, it’s challenging for her and she can have her own hobbies. It’s just that her hobbies are so restrictive and involve either carrying her everywhere (which is hard work!) or music (which is sending me crazy).
I adore our life with Amy. She’s our world. But I do count down until my next break as the physicality of her care is challenging on our backs. The last ten days has felt like non stop meds drawing, nappy changes, transfers, showers etc. It feels like there is no end in sight right now which I know sounds awful – but we qualify for help for a reason. We did briefly have carers come into the home and it was great, but in the end I decided it added to the risk of catching the virus. We’ve already had two letters and a phone call to tell us Amy is extremely at risk. So if we are going to do this we are going to have to do this properly. I was so looking forward to our little holiday in the Peak District. It hurts to have something you were looking forward to taken away, but it’s going to be so so good when all of this is over even just to leave our garden!! I really feel for people who don’t have any outdoor space during this time, we are very fortunate in that respect.
My heart aches at some of the stories I have read.
Families not being able to attend their own child’s funeral for example. My heart is warmed by how our community has pulled together. A few nights ago people all over the country stood outside at 8pm and clapped in appreciation for our wonderful NHS. There were cars beeping, fireworks, claps and cheers. It made me very emotional. We have managed to get a few deliveries of food supplies from local companies so that we didn’t have to go to the shops, there are people delivering home cooked meals to elderley and vulnerable people. I have been saddened by the selfishness and stockpiling that has occurred in our supermarkets. People were bulk buying things like hand sanitizer and various other things that as parents of a tube fed child use every single day to minimise risks and infection.
I’d love to know how everyone else is filling their day? Our days involve being in every room at least twice. We have used the swing lots, the standing frame, every toy, the ipad, the tv, we have patrolled the perimeter looking at every flower and leaf, we have sang so many songs. We baked, we painted, we tried all of the things we feel we are “supposed to” do even if they’re not Amy’s idea of fun. Gotta try hey. Whlist she’s awake we don’t really get time to do things for ourselves, we take it in turns to do jobs and make meals etc. At night it feels so good to sit down and watch the TV song free!
So my advice to myself and everyone else is. Do what you have to do to get through this (within reason of course!).
You can not be your child’s entire team of specialists. You still have to be yourself and somehow do things for yourself, even if it’s meditation in bed before going to sleep. Don’t let the judgments of others drag you down. Only you know your personal situation. Don’t compare yourself to the supermum’s of facebook. If their life looks perfect on social media, remember that it’s just social media and not real life. I’ve made Amy look like the happiest child in the land on Facebook recently. We don’t film the tantrums, the meltdowns, the seizures and so on.
Be kind to yourself, be safe, stay home! We will all get through this, you got this.