Chronic and me

Once upon a time there was a little girl who by the time she was 8 had spent more time in hospital and at home than anywhere else. She slept in arm and ankle splints and had a brace for her kneck and was either carried around or pushed in her wheelchair. The pain was unbearable and her difference from her peers crippled her with anxiety.

Slowly she lost the wheelchair and gained back her strength to just about participate in daily activities like school but it was quite late, everyone had friends and she tried to fit in but just as she did the chronic would kick in. Back at home, tucked up in bed. Weeks would go by, sometimes she couldn’t even move her head. She thought this is my life and it’s been oh so tough, I tired already, enough is enough! She mustered some fight to beat this crippling fate and head back to school again far too late.

It was about year 9 by the time she was a frequent visitor to school and even on bad days there was a dedicated learning room to save traipsing round the school. As if she wasn’t weird enough already she then became the girl who ‘had a dead mum’ who passed away 3 days before her 14th birthday. They were all so young. The emotional toll started to hit so very quick. She had no time to grieve as she was handed the mantel of mother pretty quick.

At 14 the housework and cooking the food fell at her feet along with the drama of a 10 year old who needed a mum but was stuck with a sister and was just a glum and early GCSE’s to prepare for most night of the week and of course a chronic disease trying to peak.

The tears fell hard and they spashed on the floor, She cried so oftened and begged for no more. Slowly the chronic started ease and bad days became less and she started cooking with ease. The deep clean on Saturday became less of a chore as she faced each toilet and scrubbed at the floor. The medication was doing its job it felt like an answer. She felt she could breathe.

Next she found love. So very young people did say but she was happy and cared for and liked it that way. He loved her too and asked if she’d like to spend her life with him. Of course she said yes and let that chapter begin. It started with a job and a home which they didn’t even get to make their own before chronic set in, but a new kind of pain this kind of chronic was not the same. There was additional pressure of a secret, they were told could be the cause of the problem but no one really knows. That problem was teeny and picked in pink, safe in her tummy or so they liked to think.

This chronic got worse and ended up in hospital with oxygen on as high as could go, they discussed intubation but incase you can’t tell she goes down fighting so said ‘like hell’ she fought for the baby, she fought for her man, so fought for her future and walks on the sand. She shed no tears as they were a waste of energy. She kept a level head and focused on the 3.

Then the tears started to flow as she went into labour at 28+4 weeks the teeniest bundle you’d ever seen born was layed on the bed in a sandwich bag letting out a huge wail!

After an impossible journey the 2 made it home from their hospital wards. Safe in their beds or thats what they thought. Only home for 3 weeks until an impossible force pushed them apart back to hospital of course. It was the little one this time ‘failer to thrive’ they say which is a bit of a cop out for we don’t know how to help as they messed with her oxygen and changed ng tubes she was prodded and poked with no good news. She was with her through this whole experience with her own new oxygen use. They suffered together while wandering what was the use. They tiny one deteriorated while the hospital sat and watched. They did nothing to help just kept checking numbers like a mad man expecting a different outcome everytime they looked at her. Finally a doctor came to the rescue and sent the worried 3 to Bristol for answers and help with a doctor who might finally know what to do.

Bristol brought an exhausted PICU journey however it bought a diagnosis for she and her tiny pink bundle that was a relief for all 3. She had SAVI which is rare but theres a treatment at least. It cannot be cured only managed you see but there was finally an answer for the exhausted 3. This journey went on far too long you could say with the little ones release only 17 days before Christmas day! Everyone home and on oxygen trying their treatments to see what life might be.

I would skip this next bit as its not medical you see but it’s cute and a silver lining in a very grey sky showing all was not lost at least not for all. The 3 were stable and coping as well as they could. Getting out with 2 lots of oxygen and an ng tube was tough for them but she made it and found it so hard on the littlest until one day she was the littlest no more. A tiny little boy bundle made them a 4. The journey was easier with no hospital for her. This little family was blessed to be 4.

Now all 4 were learning how to live and after a year she’d given all she could give. The cracks started to show and the chronic was rough, living each day like this was enough. They’d trip over 2 sets of oxygen tubing, feed tubes too or be stuck shielding because of Covid, that was new! A global pandemic that could kill 2 of the 4, they didn’t like those stats so kept closing the door to friends and to family it wasn’t a personal attack just a way to preserve them and let them come back.

She has more bad days that good at the moment she’s fighting her demons and tells them to go. Life is so tough with the prospect of a daily school run when her children are barely out and ready to run by 11am on a good day. Her days are filled with vomit and sats checks before she even gets chance to look after herself I guess thats why her lung took a break and decided to collapse during the first covid outbreak. She doesn’t dream for a future anymore. She can’t see the beaches or the long evening walks. She has a chronic irreversible disease thats broken into 7 little letters ILD and SAVI.

This she is me

This me is Hannah and I am bigger than my chronic. I have to be.

For my 3.

If not for me than for my 3.

Josh, Lydia and Jaxon ❤

That wibble, wobble belly feeling.

This morning I woke up just feeling wrong. My heads in the wrong place. My hearts sad and I want to scream and cry at the same time.

It doesn’t help that I felt the full effect of my flu jab last night and I’m still super groggy this morning but life’s just continued to hit me.

Last night we decided to watch the news and saw the Corona cases which had set me into another heightened panic, I know they are just numbers and thats how most people are lucky enough to see it but for Lydia and I its one of those beautiful ventilator spots in ICU and possibly not the chance to return home.

We are also sorting out everything that we physically can to get Lydia into a good school that will be accepting of all her additional medical needs which is a right farce… I wish it was as simple as writing down their medical needs then you get sent a list of school then you have your usual 3 choices and bam your kid gets to start a prepared school along with your daily routine printed out. Sorted all SEN students won’t need to fight or be taken to a panel. I mean seriously my Lydia’s health concerns are being taken to a panel… if it wasn’t for the social side I’d home school her !

School then brings a whole new issue of leaving the house before 9 am 5 days a week…

Before covid we attended church on most Sunday’s which started at 10am. We were always late and not because of anyone other than Lydia. We would be dressed and ready to go then bam Lydia thrown up and we didn’t get to sicky bowl in time so its operation double parent, ones cleaning the floor and holding back Jaxon with the other is hand holding, changing and probably passing Lydia’s NG again. No matter when we start that blasted feed she vomits it all up and her tube most of the time. How am I ment to deal with all of that solo at 8am 5 days a week without having an actual breakdown…. How will I have enough school uniform!?

There’s all of this plus my health, I’ve only got worse lately which is becoming a bit of a joke really but we don’t leave the house everyday even after 12pm so I have no idea where my energy is ment to come from, I’m already running on energy from the night fairies! I’m doubting myself and kicking myself for falling pregnant in the first place. I had no idea I would end up like this, in this much of an extreme situation and you can trust me if I’d have known I never would’ve put my kids through this awful nightmare and I certainly wouldn’t have dragged Josh down with me. He deserves so much more.

My whole family deserve to be able to go out more without it being a fight to be vomit free or changing plans because of another SAVI temperature, to name a few. I thought as soon as we left that hospital nearly 3 years ago that life would start falling into place and things would get easier but nothing really has, now she can sit up and vomit into a bowl but her oxygens increase to a point where we have the maximum we can in the house and that still only gives us 9 hours out of the house before we need to order more and we can only order monday to friday for next day but if you order on Friday they won’t deliver until Monday. It’s means we have to be so prepared for every outing. Then there’s Jaxon who just goes along with everything, as long as he has access to boobies we are all good!! My heart never dreamed of having another child after Lydia but thank goodness he’s as chilled out as he is, I don’t think I could take the stress!!!!

I’m panicked and worried and desperately want to look like I can handle all of this or I can leave this for future Hannah to deal with but it sits heavy on my heart and I can’t keep offloading the same drama to Josh so I have decided to write it all down when life starts getting me “wibbly, wobbly in the belly”

P.s I adore my tiny muchkins and Josh I just wish life was kinder to us all!