It is 3:30am. I am lying awake in bed, typing this on my phone, in the dark with my husband sleeping softly next to me. Anxiety is a funny thing. Stress and pressure can worry you to withdrawal all day long. And the overwhelm can lead to depression when it all gets too much.
There seems to be drowsiness all day. The thought of having to cope with all my worries makes me feel tired. Shut down mode. But as the day starts to turn into evening and my duties as a wife and mother draw to a close, a strange thing happens. After feeling drowsy all day and wanting to sleep, when my time is my own, I suddenly wake up! Thoughts start whizzing around. My brain is powered with plans, dreams, organising, full of hope and opportunity.
It's a wonderful feeling but the problem is, I need to get to sleep. Or tomorrow will follow the same dreary pattern. The cycle starts again. Tired, irritable and struggling through the day. But unable to sleep at night for the overactive brain.
I may have made references here and there to the fact that I have been in recovery from post traumatic stress disorder since February 2016. The reason for my anxiety. After the traumatic journey of waiting a year for my son's diagnosis of his rare genetic disorder (Hypobetalipoprotenemia - he struggles to absorb fat), coming to terms with it all, the nasal gastric tube, the gastrostomy tube and finally to just the daily management of his condition.
Above you will see a photo of the ng tube. Nasal gastric, so basically through the nose, down the back of the throat and into the stomach. With the reflux disease (it would all back up in his gut because he couldn't absorb the fat) the tube would constantly be vommed out! It was traumatic for both of us getting it put back in. Watching my baby go through that level of discomfort. Not nice!
And here is a photo of my censored(!) naked boy in just his wellies!! Proof that despite the odds of hardship, he still grew up fine! And it was the only one I had to be able to show you the g-tube! It's probably not the best as it's a bit blurry! But you get the idea. He had a tube dangling down from his stomach.
This photo was taken in July 2015, about a month after the g-tube was put in. You can see the end dangling out his vest. He was 15 months old here! He looks like a 9 month old baby! He was late walking due to his late growth development and never crawled because of all the problems with his reflux. So he was quite clever at adapting to having the g-tube. He bum shuffled with one leg! The leg on the opposite side to the tube. And kind of tucked the other carefully so as not to catch the tube. I like to think this is a message of hope and proof that babies are indeed resilient.
I am still yet to write a blog on our experience of those horrendous first two and a half years. (The g-tube came out November 2016 and my son has recently just turned 3). I find myself getting better very slowly. Each time I feel I'm getting somewhere and becoming more stable, another button will get pressed and it'll prompt me to realise there is still healing to be had.
I was so excited when Eli was born. I had so wanted this baby and I was on cloud 9 when he arrived. I remember being in a happy hormonal fug. It was all to come crashing down. Parenthood is a shock whatever happens but we had an extra shock! I've essentially had to grieve the 'normal' child I may never have. (I say may because I am standing in faith that God will heal Eli's defective genes). It all happened so fast that it was all we could do but just get on with it. Dig our heels in and cope with what felt like fiery trial after fiery trial.
There is still a lot of work to be done as I've only just started therapy to work through my remaining trigger points, learn how better to cope with stress and heal all the hurts. I've been stable on anti-depressants since May 2016 and started back at work part tme in February this year. Exactly one year off work to rest and recover. Things are looking up. Eli's condition is much more manageable, it's not without its problems but we're definitely through the worst. I'm finally coming to terms with what we have. Not focusing on the negatives of managing his condition. Nor the 'normal' babyhood I feel we missed out on (read this post on Eli's reflux disease to give you an idea of the gruelling schedule. In the early days before we received the correct diagnosis - http://www.justcreativejulia.co.uk/blog/category/reflux-disease
But realising what's done is done. It will stay the same until the day God chooses to heal him. And although we didn't have the babyhood we expected, we still had one! And we have a beautiful boy that, yes, is hard work as all children are. But he is so sweet and it's such a pleasure to see him growing up and to have a hand in nurturing God's best in him.
So if you can identify with anything here, post traumatic stress disorder, rare genetic disorders, the general hard work that children bring. Please believe me when I say there is light at the end of the tunnel. As long as you can forgive your hurts, work on your triggers, allow for rest and healing, take all the support offered to you and trust, it will get better. Peace to you all.
I'm Julia, Just Creative Julia, jolly pleased to meet you!
Welcome to my creative lifestyle blog, established 2014. My creative journey in discovering my authentic self as a neurodivergent woman.
Embracing the Neuro Spicy! Here you will find many different topics centring around creativity, deep thoughts, mental health, food and more.