Thinking + Praying

Last week I posted on Facebook asking for thoughts and prayers.

(And I just want to say.... a small disclaimer that I am not generally a fan of writing vague posts that leave people puzzling and wondering what on earth you are hinting at... but just at that very moment asking for thoughts & prayers was about all I could muster up the courage to share.)

There are some things that are too complicated, too hard to process and I have to go into silent mode and think everything through before I really want to talk to Roddy about it, let alone share any further.

Our journey with Eliza has always been full of twists and turns and this is just another one - and that's ok.

Over the past year we've noticed Eliza's back curving and twisting more... she'd seen her regular paediatrician in June 2017 before we moved to the US and all was good... but she changed a lot over the course of 12 months. 

We decided to wait until we saw our regular paediatrician again in June 2018 when we returned to England on vacation. We arrived on Monday, and were booked in the very next day. I honestly was concerned that we would be pressurized into procedures in the USA - free healthcare isn't perfect, but healthcare driven by profit can be problematic too... So we felt comforted by seeing Dr Jefferson who has known Eliza since she was a baby. I explained my concerns, and Dr Jefferson said kindly "yes, American doctors would be far more likely to press for a surgical route... but let's just take a look shall we?" and she whipped off Eliza's top, and without a moments hesitation said... "yup, she's going to need surgery".

Turns out she had sprouted over 9cms in under 12months, so now her spinal curve was much more pronounced, it was going in and to the side ("significant scoliosis, low thoracic curve convex to the right with loss of thoracic kyphosis" for you brain boxes that understand all that jargon) 

I have to say, it really spoiled our first week in England :( Roddy and I had our first meal out alone on the Thursday night, and finally got to talk in a 700+ year old pub in our village - and we both cried at the table exploring what surgery might look like for Eliza. Surgery for your child is all in it's own category of parental anxieties. But more than that, surgery for your child with autism and learning difficulties is in whole other, extended category. 

Once we knew what might be up ahead, we booked in with a very highly recommended orthopaedic surgeon in Miami, and that's who we saw last week. That's what the prayers were for.

He was... pretty old really... that was my first thought. Very straight forward. His bedside manner wasn't the greatest but I want someone that can practically fix a spine with his eyes closed, and I felt reassured by his length of experience.

Eliza didn't like the poking and prodding, the measuring. She can't even tolerate wearing the hospital gowns. She kicks out and shouts when the doctor tries to look at her, or asks her to touch her toes. It's irritating and heartbreaking at the same time. Every small thing takes inordinately longer than you expect, or plan for.

I was truly glad that we were prepared after our UK visit and that his suggestion of surgery was neither a shock or surprise. 

They didn't really want to wait, so we are booked in next month. In less than a month! That bit did make me gulp a little.

On the drive home, we both looked in the rearview mirror telling Eliza how proud we were of her. Roddy, ever practical... ever positive - expresses that he is excited. How fortunate we are to have found a good doctor. How quickly it's moving so her quality of life will improve. For me, I logically reason those things and absolutely know its for the best, but I still let the tears silently flow as I look out the window and picture her having a simple blood draw, being put under general anaesthetic, the confusion she'll feel when waking up, and the limitations we'll have to ensure she's under to protect her healing back. All the concerns I'd have for any of my other children, just amplified by the fact she's our special girl.

So since then, we have both been processing. There's a lot to process and not much time to do it in. I know the date will come around quickly. There's been more tears shed, and more fears expressed. Friends have pulled together to offer practical support as we stay in Miami for the week of her procedure. Tomorrow, Roddy and I go to Miami to see the hospital and for them to take us through exactly what will happen and what the recovery might look like.

Since Thursday I've tried to find blogs by other parents, and read up all I can... but coming up short. Spinal surgery on a child, tick. Spinal surgery on an autistic child, tick. But even the stories of those with autism, they are fully verbal and able to communicate wants/needs. I know I'm not the only parent going through this, I can't be the only parent that wants to vomit every time I think through the surgery. Maybe this stuff is too hard to share. So I guess I thought, I really have to record this journey. You, the person that normally reads this blog...might not be too interested. But hopefully one parent with a child like our Eliza will find it randomly one day on the internet and it will be helpful... comforting. 

Every logical part of me is happy about this, and I even feel comfortable about the surgery itself - but every other part? Nothing doing right now... There's this feeling (I don't know if self-created or real) that I should be upbeat and together about it, because all the other feelings are pretty scary and ugly. And if you wade in them for too long, they can take over. But I don't much feel like being upbeat to be honest. I don't want to cry either (today at least) - I just want to sit with it, BE with it... and sigh a little. That's all.