I can’t remember the last time I sat down to write a blog. Actually I can, I can remember many times when I’ve sat down and the words just didn’t come.
It’s not as if there hasn’t been anything to say. So much has happened in the last year, so much that I intended to write about. I’d planned to document our big house move, the wrench of leaving London, the dramas of building a new medical and therapy team, the journey of the girls starting two new schools and the stresses of the having to fight for the right school place. The weirdness of trying to make new friends in your late 30s. There has been a barrage of things to write about and reflect on but the ability to write has been completely absent.
I’d imagined last year would be the year I finally committed to writing more frequently and with specific helpful practical experience for people looking to make a big house move with a disabled child. It just didn’t happen, in fact the opposite happened and then I was left in a position where there was too much to say, I didn’t even know where to begin.
I joined a Facebook group of other mum bloggers in the SEND community, started following hundreds of other bloggers and suddenly another problem crept in. Comparison. There is a reason they call it the thief of joy. I started to over-think what I had to say, how qualified I was to say it and worrying that it was self-indulgent rather than serving any greater purpose or campaign. It became self-fulfilling writers block.
Add to all of that the fact that actually doing all of the things we’ve done this year takes up an awful lot of time. The never-ending admin, chasing, box unpacking as well as making sure you’re not neglecting the impact of the emotional demands on the children in all the chaos. All of which meant that by the end of the day I was good for little but crashing out in a heap.
So why now? What’s changed? The short answer is nothing, I’ve just decided to sit here until something is written. I have to climb out of my self imposed writing wilderness.
This cold Tuesday in January finds us now as fully re-integrated Northerners. Our youngest has started to flatten her vowels less than a year in and my accent has lost much of it’s 15 years of London mellowing.
It has been an odd start to the year as Mojo was finally due to have her long awaited hip reconstruction surgery in the first week of January. We spent most of Christmas trying to keep her germ free and well fed to leave her in the best possible position for recovery.
All the pre-surgery appointments were straightforward. First step is making sure we understand the surgery itself, how it’s done and why it’s done. Technically this is an elective surgery as it isn’t essential to life but it will prevent painful complications which would potentially be caused by leaving the hip untreated. Once we were happy (for want of a better word) with the details of the procedure itself we then get into logistics.
Step one is the immediate aftermath of the operation, stabilising her and ensuring she is as comfortable as possible with a pain management programme. She will either have morphine or an epidural for a few days both of which will require her to be in a high dependency unit. After the operation Mojo will be in a spica cast which goes from waist to knees to protect her hips while they recover.
Had we had the operation in London she wouldn’t have had the cast as they use a different recovery method now. I grew to understand during the discussion stages that both methods have their advantages when it comes to recovery, pain management and logistics. I’ve found over the years that it’s easier to embrace what we are faced with rather than lamenting other paths and the cast is what she will have so that is what we will learn to cope with.
I first wrote about the possibility of hip surgery after a very badly managed consultant appointment way back in 2015. Hips don’t lie (Straight) We’ve come a long way since then, as indeed has Mojo’s right hip which is now fully dislocated!
Step two was a series of pre-surgery appointments. The first was focussed on Mojo’s health, previous anaesthetics, existing conditions and possible complications. This took place before we even had a date which I think made it seem fairly innocuous, I didn’t dwell too much on the complications.
The second meeting was a week later and took place with the therapy team. They were the first professionals to directly address Mojo and talk to her about the surgery and the recovery. They had a doll with a spica cast which they used to explain what was going to happen and they explained that she would be able to choose what colour her cast was which she liked. I really valued the way they included her as generally it is left to me to explain what has happened after a meeting, which is usually met with a look of I-know-mum-I-was-there! The therapy team ran through what would happen with equipment, physio, going home, care of the cast and explained the significant fact that Mojo would need to be repositioned every two hours day and night while she is in the cast to prevent pressure sores which are very likely given that she has so little flesh on her bones. I came away from that meeting head buzzing with information but, importantly, with all my questions answered. There was no rushing, no sense that we were taking up too much of their time. It makes such a difference to my frame of mind when I’m processing later.
Between these meetings and the final pre-surgery meetings there are a string of blood tests, confirming blood type and importantly in Mojo’s case, keeping an eye on sodium levels and infection markers.
The final pre surgery meeting took place a few days before the surgery was due. This was with the surgeon and was an in depth recap of what was going to happen, how long it was going to take (9 hours, shudder) and what we could expect on the day of the op. The final stage of the meeting is running through the consent form which we need to sign. The form outlines the specifics of the surgery then includes a list of the intended benefits of the surgery followed by a list of ‘serious or frequently occurring risks’. This list is no fun at all. It’s like someone sitting you down and gently reading out a list of worst nightmare scenarios, infection, bleeding, nerve or vessel damage, pain, implants breaking, then the ones we knew about, pressure sores and possible redislocation. We nodded our way through the list, nothing that really we didn’t know was a possibility. We tick the box agreeing to blood transfusion if required. As the form is handed over the consultant says, in the kindest voice one could possibly use to drop this into conversation
‘There is of course always risk to life’.
Now it’s not like I didn’t already know this, I know that sending a complex child into major surgery is a risk to her life but when the surgeon says it, it makes it seem more real a prospect somehow. It stings. Like a blow to the heart. He quickly follows up by saying it is so rare that it doesn’t get included in the risks list but that we needed to know that it could never be ruled out completely. I nod, wipe the tears and we move on, form signed.
The nights running up to the surgery I slept very badly, my husband and I deal with hospital admission and periods of severe illness with Mojo very differently and it can be difficult, it’s never intentional or ill meant but we are both scared and we both need to process that our own way. I want to make lists and plan for every feasible eventuality and he can find my hyperactivity and tension exhausting. I’m packing bags like we are going to a nuclear bunker for a month rather than a hospital in a major city for a couple of weeks. It helps me to feel like I’m doing something productive.
Meanwhile in the background Mojo’s little sister is now 4 years old, observant and emotionally attuned to the atmosphere. She has become very clingy and suffering with horrible separation anxiety. We have explained to her what is going to happen and she asked lots of questions which we answered honestly (but without volunteering any details she wasn’t specifically asking about). I make sure we have lots of 1:1 time in the run up. We go for a nice lunch, spend hours playing dolls and board games. On the day of the operation I leave a bag of treats/bribes for her Granny to deploy when needed in our absence.
The big day arrives and we have to be up and out by 6am. Mojo is relaxed but snotty, at the back of my mind I am certain that her cold might mean that the operation can’t happen, with Mojo any kind of compromise to her immunity might make it a risk too far.
We check in, get moved through to wait to see the team and the anaesthetist. The wait is longer than I had expected. Mojo swaps between my knee and Daddy’s knee and we both take deep inhales of her neck and hair which is driving her mad. The longer the wait the more suspicious I get because surely given that we are the only ones on this list for today and it’s a nine hour job they won’t be dragging their feet at this stage. We go through anther health questionnaire with the nurse where we explain about her cold and tick off lots of ‘has she been exposed to chickenpox in last 2 weeks’ type questions.
Eventually a lady with a clipboard and a nurse arrive. I can tell instantly that the lady is not a medic. Don’t ask me how I suppose it must just be exposure to medics in setting that give me a sense of who is who. Either that or the clipboard. She explains that they are very sorry but our surgeon has called in sick, it is rare but obviously because of the gravity of the surgery and his knowledge of Mojo it isn’t one they can get someone to cover. My immediate response is like someone wrapping me in a blanket, I feel calm and relieved.
On the drive home I felt almost euphoric because my fight or flight instinct which had just wanted to scoop her up take her home and cuddle her for the rest of the day had been able to do exactly that. Rationally of course I knew that we were simply postponing the inevitable and we would have to go through the build up and sleepless nights in the build up again in a few weeks time. It was both a huge relief and an enormous emotional anti-climax.
Which brings us to today. Back again to being 2 weeks away from surgery and obsessing about Mojo’s exposure to even a sneeze from anyone else. We begin to hibernate a little and I am never more than arms length from a Dettol wipe.
As much as the delay was frustrating at the time, not least because the desire to just have it over and done with was so strong, on reflection there are advantages to going through it all. I’m less anxious about the process on the day now, I feel better prepared, I didn’t unpack the nuclear bunker bags and have just added to them when things have occurred to me. Being so soon after Christmas first time round we were going in tired and a month later I feel a bit more rested and in the right frame of mind. Mojo herself is much better than she was health wise (at least for now!) which makes me feel less like I might be putting her in danger unnecessarily. All the equipment we need to care for Mojo at home including a mobile hoist and sling has been delivered and is in situ which basically means one less thing for me to think (worry) about while we are in the initial recovery stage.
It’s been a long, almost 4 year road to get us here but I now feel ready to do it. Mojo is ready, she wants it to be over and done with so she can go back to school.
So all that is left to do is wait out the next two weeks and keep everything crossed for a smooth ride.