Prior to the coronavirus pandemic; I considered myself both blessed and grateful for the support we got. The support we get through respite, school, and family. I don’t need to tell you how hard it is being the parent to a child who is medically complex; chances are, if you’re reading this, you already know too well!
We have now kept Amy-Rose home for 25 days.
For almost every single one of those days she has cried and screamed for up to 10 hours a day. There are only so many times we can do the same things with her, she is fed up with her toys, and I can’t believe I’m saying it - she’s even fed up with Youtube! I never thought I would see the day where I couldn’t snatch 10 minutes of peace to myself with a coffee whilst she watches her videos.
I imagine that those with “able bodied” or “neuro typical” children are also feeling the strain, this situation is unprecedented and I don’t mean to undermine anyone's situation at all in my ramblings but I am tired. Bone tired. The tired that sleep can’t fix. My back hurts from lifting and repositioning, my head hurts from the constant noise, my hands hurt from all of the fiddling about with syringes and feeds, my skin stings from the extra washing of hands, clothes and surfaces.
I save so many jobs for when Amy isn’t there. When she is there, she requires you 100%. You can’t go away to do other jobs, you can’t sit and read. I have had to keep leaving the room to breathe for 5 minutes just to escape the crying. It brings on a lot of complex emotions for me. I am feeling hopeless that I can’t soothe her. Upset that she hasn’t the cognition yet to understand why we can’t go out. Frustrated that I can’t get a moment to myself. Annoyed that I am having to stay up a lot later to make sure everything is done that needs to be done.
When Amy goes to respite or school there will be many meds being given, many feed changes, many outfit and pad changes. Between her dad and I we are now doing ALL of those things in addition to everything else we already did. I usually run on empty and plod on, but I know when my next break is. Not knowing when we can ever have respite again is really a struggle for us right now.
I was comforted today by reading a post on a cerebral palsy forum I am on. It was a dad seeking advice to try and help his distressed daughter. His daughter has the same diagnosis as Amy and is also having days of prolonged distress. It was bittersweet. I was pleased that others out there share our struggles, but then it also pained me to think that others are having to go through this turmoil.
It isn’t Amy’s fault, and I feel very guilty for complaining… but her struggles are my struggles.
Everyday I try to incorporate her daily physio (standing frame and a lot of things are done by school now), I try to do things that don’t involve YouTube or noisy toys, I try to keep on top of her pain levels and various medical needs. It’s like juggling but people keep throwing in an extra ball. Sooner or later the balls will all fall to the ground… but right now I will need to pick those balls back up and carry on as normal. This is something I’ve never really had to do.
Usually if it all gets too much, I load Amy into the car and we wander round the park or the shops. Or, we ride the storm, knowing that tomorrow might be a better day and that she will be going to school or respite and can be part of a structured routine involving lots of different people.
Yesterday when she became extremely distressed; we had no choice but to put her in her bed for a while so that she could calm down. When she’s angry she can become quite aggressive. I have lost count of how many times I’ve been hit, kicked, pinched and slapped. It’s heart-breaking. I just want to help. To know what’s up and how I can make it better. It makes me feel like a bad parent, like I should know what she wants and be able to fix the problem. After 20 minutes of screaming and kicking at her bed doors, she was quiet for a while. By the time we got her out she had somehow regulated her mood or become too tired to scream more.
We enjoyed almost half an hour together before she returned to screaming.
I have tried crafts, instruments, messy play, baking, you name it we have tried it. Yesterday she became very upset in her standing frame after only 15 minutes and I was so frustrated as it had been such an effort to get her into it in the first place. I have to keep reminding myself that it isn’t ME struggling, it is HER struggling. I feel a huge empathy for her and can’t even imagine how it must feel to essentially be trapped by your own body. She wants to articulate something and can’t. So gets angry and frustrated with us, which makes us angry and frustrated, and the whole cycle continues. Often when she is this angry, we aren’t able to reason with her or try to talk to her. You just have to remain calm whilst internally you’re crying and feeling panicked and helpless.
I ordered some second-hand toys for her the other day. I can’t wait for them to arrive, I’m just not sure what else to do! Hopefully they can provide even a few minutes a day distraction and pleasure for her.
I still can’t believe there are at least another 9 weeks to go before we can potentially (not even definitely) end Amy’s 12-week isolation. I am hoping that by then Amy had adjusted to this rather limited way of living and that she can find some peace.
It’s at this juncture that I’d like to thank each, and every person involved in Amy’s care, from every aspect of her life.
School teachers, TAs, nurses, carers, speech and language therapists, occupational therapists, physiotherapists, dieticians, doctors, everyone. There are more people involved than I can even remember. There are people behind the scenes, secretaries, admin assistants, all sorts, all vital parts of our life that I will never ever take for granted. Being home alone with her shows just how much input is needed from so many different people to make sure that Amy progresses, learns, develops, and maintains everything she has already worked so hard to achieve.
I also wish to thank all friends and family who are keeping in touch. On Thursday last week I got with the times and joined in on the Zoom trend. I attended a coffee morning hosted by Reuben’s Retreat (they’re an amazing charity that helps families like ours in so many ways - feel free to check them out!) It was so great to see familiar faces and even just listen to what others have been up to. (Added bonus for me - I won the quiz! Being an Alice in Wonderland geek finally paid off). I am missing my parents sorely, and everyone else in the family.
I think as a parent of a medically complex child, you already spend a lot of time thinking about illness and preventing hospital admissions. It's strange to see so many people suddenly feeling similarly to how we feel almost all of the time. I've really had to step up my game in remembering meds times, inhalers, listening to breathing, watching out for increased seizures and stoma site issues. I am more determined than ever to make sure I am doing everything within my power to stay away from hospital during this time. I was already hypervigilant and I know that trying this hard to be on the ball is putting a lot of pressure on myself.
It's a hard thing to grapple with daily - trying to care the right amount, to not drain yourself from anxiety and worry.
I wonder if life will be different after the coronavirus will be so different. I am already a reflective and grateful person; I know I love a good rant about how hard things can be, but I do go to bed every night so thankful for our situation. Things could be so much harder. There are people out there right now fighting for their lives thanks to this virus. There are key workers putting themselves in danger to keep the country afloat; they are scared, they have no choice, and they deserve all of our gratitude and respect. I already love my hand hygiene and antibac sprays. I already love being home. My main thing I miss right now is coffee shops and going out and seeing the blossom trees. Spring is such an amazing time of year; I know that I will appreciate our seasons and the outdoors so much more after this.
I'd love to hear how everyone else is getting on. If anyone has any tips? Have you found out anything new about yourself or your child? Yesterday I hoisted Amy the first time in a very long time - just for something to do!! She enjoyed swinging and spinning around for a few minutes before returning to her angry outbursts and wanting to do something else.
Good luck and stay safe.