This post was first written way back in 2017 when we first knew for certain that Mojo had to have major surgery on her hips. A series of awful things had happened in the world politically and there was so much sadness and loss on the news. I didn’t publish this at the time because it was so downbeat and a bit sorry for myself so I didn’t like it. When I found it today though it reminded me of how it felt in that moment and now we are almost a year post-surgery how very different things are now for us (sadly the same can’t be said for world news but one day at a time eh!).
Insert your own back in time type music here…
It’s when they are asleep isn’t it? When you find yourself staring in awe at the tiny humans you created and wondering how it’s possible to love anyone as much as you love them, that all-consuming, overwhelming, wave of love you feel when you watch them sleep.
Watching them sleep is something I’ve done a lot of lately. I’ve found it to be one of the only ways to deal with the horrors of the last month or so. A powerful combination of national tragedies, losses to our HPE extended family and Mojo having a protracted and recurring bacterial infection has brought me to one of the lowest ebbs I’ve had as a parent.
I’ve not been able to bring myself to write. I’ve sat at a blank screen for hours on end with so much to say and no way to express it adequately. I’m almost certainly not doing so now but at least the desire to try has returned.
A few things this week have shaken me out of my (almost certainly self-indulgent) darkness. One of them was a conversation with my 2 year old.
2yo: ‘Mummy are you happy?’
Me: ‘Yes baby I’m always happy when I’m with you’
2yo: ‘Where has your happy face gone?’
Yep, that’ll do it.
|In A&E waiting for yet more antibiotics
We also received the news this week that Mojo now does have to have the horrendous hip surgery that we were given a reprieve from 18 months ago. Her hip is now 90% out of the socket and it is anticipated that it will start to cause her pain before very long.
The surgery will mean a few things, the most obvious being that she will, once again, be subject to an anaesthetic and intubation two things which I despise. This will be the longest surgery she has had so far, upwards of 8 hours and the idea of that makes me want to vomit. The surgery itself is brutal, they cut inches from both her Femurs and then place her hips back correctly. The resulting change in leg length and appearance is (apparently) a bit strange at first. Then comes the recovery. You can guarantee that when medics describe it as painful it’s going to be bad. She will remain under epidural for three days and then the pain management will begin. Once we had discussed that the likely hospital stay would be a week we got round to home management.
Currently at home we do most transfers manually. I carry her from bed downstairs in the morning, I carry her from the house to the car, I lift her in and out of the bath and so on. Once the surgery is done I will not be able to do this. She will need hoists and proper postural support in order to recover properly. I wont be able to hold her face against mine as we go upstairs, hell we won’t even be able to go upstairs, she will, at least for a while, have to have a hospital bed put into our tiny front room. And bathing I asked? ‘We may just have to work around that’ she replied.
After initial recovery Mojo’s wheelchair will be changed for a more supportive, more constrictive one, she will no longer be under the care of wheelchair services she will be moved to specialist seating which is for more complex seating needs. How long will she need the leg supports I asked. Forever, came the reply. Why was it that this was one of the things I found most difficult? I’ve often rolled my eyes when people have suggested I can’t bring that ‘buggy’ in here. Well soon her chair will not be mistaken for a buggy. She will look different.
This surgery is a game changer and probably the most frustrating thing with it is that it won’t really have any significant advantages. It’s preventative rather than curative. Once Mojo has been through all that pain and discomfort and confusion as to why she can’t be in her room or why she’s getting so much less physical contact, she will have gained nothing. It will have no impact on her ability to support herself or to stand. Since the underlying cause of the dislocation is muscular rather than skeletal there isn’t even any guarantee that it won’t just happen all over again. We will need to change our medications, although the consultant didn’t expand on this I get the feeling the new drugs are not without their drawbacks.
So why, I hear you ask would all of the above make me feel less anxious, less sad? I honestly can’t answer that. I had a legitimate reason to cry and I did and then I felt better. For now I have a focus for my anxiety, a topic to research and a new normal to adjust to.
On Friday when I met Mojo from school I was still reeling from the Orthopaedic appointment and looking at her happy face made me feel guilty for what we were going to have to put her through. Then as I lifted her bag into the car I noticed a certificate was in the back of it. I took it out to find that Mojo had been awarded Star of the Week. It is a testament to the marvelousness of her school that all individual achievements are truly celebrated even if they wouldn’t be seen as anything at all to most neuro-typical children. This week my exclusively tube fed daughter ate most of her lunch and drank from a cup every single day. She fed herself with a spoon and she held her own cup.
And just like that she reminded me that she will take this hip operation in her stride. She is the most resilient, persistent, unrelentingly cheerful soul that I know and while I might struggle and flail around in the darkness of my own thoughts she will be there constantly shining, smiling and constantly surprising us the same way she always has.
One of the things I have learnt in my hours of sleep stalking, Mojo laughs in her sleep. It’s all going to be okay, she’s got this.