Off trach.

Panic attacks, anxiety, anger, frustration, tears, all-nighters, chaos and a disorganised mess! And that’s just the grown ups!

It has been a very difficult month to say the least and despite Mummy and Daddy being quite open about it to those who ask, its impossible for us to expect them to understand because they don’t live the life that we do.

The outcome from Rory’s surgery on 9th May was a bit difficult to swallow because the light at the end of the tunnel was no longer visible and mummy and daddy knew that although they would find a way, they would struggle to keep going with trach life for another year, another winter with very little help around and therefore no respite. Just more 4 hours sleep per night, more winter bugs, more worry, more time where we can’t do things because of the Trachy…

Mummy and daddy know that if they make a referral to social care, the disabled children’s team will work with the continuing care nurses to employ carers to look after Me (Rory) to give mummy and daddy a rest, be it through the night so that they don’t have to do sleep shifts, or just occasionally to give them a rest, time off. But Mummy said from the start that she wanted to maintain as much ‘normal’ for me as possible and try to give us both the same regardless of our needs being so different. And although it has almost finished her off, she has managed it so far, yet things got so tough recently that she began to wonder if it was a necessity in order to maintain her own health, and daddies too.

Nannie & Grandad H are the only people who can take care of Rory except mummy and daddy and because of the huge responsibility it is only do-able when Nannie and Grandad are there together and so that means weekends and school holidays when they are not away. Therefore it is not very often that mummy and daddy get a break, and when they do, because of Rory’s trach cares, mummy and daddy put us to bed at nannies and then pick us up in the morning about 9am. So between 7pm & 9am – their break consists of a good nights sleep. Which whilst is well needed, they don’t really get time to socialise or feed their friendships either, and so they kind of also become isolated too at times.

Throughout all of the good memories made this month, mummy and daddy were running on empty, they were digging deep to make sure that their feelings didn’t effect our fun. They were coaching each other through the social events where they couldn’t muster up the strength to face other humans, listen to their moans about needing a holiday, or being ready for a night out. It was difficult. They supported one another when it seemed that the rest of the world didnt have time and decided that actually, all that matters is our fab five, and that they are going to stop putting themselves out for others from now on because actually, we have enough on just getting through each day for ourselves. Mummy and Daddy were hell bent on making sure we had more good memories and fun than sad times. They did! We had lots of it…

Local walks…

Rory’s non-nursery adventures at Old Martha’s Yard..

Nannie found us newts…

Rough and tumble at home…

Having friends round to play…

Swimming for the first time in almost a year. Daddy held me because I’m strong now and mummy was a little weary of the struggle and the dangers of she couldn’t manage to hold me out of the water. It made mummy teary because I was splashing my little arms and legs whilst daddy bobbed me up and down gently, I loved it. We had Pizza Hut afterwards, we were starving…

Nannie collected us a frog…

We did Headstart with Auntie Chloe and Auntie Mandy and the rest of #teamdean…

I went to the farm with Oscar whilst Austin was at nursery…

Mummy had a meeting at nursery to get ready for when I can go with Austin. She talked to the manager about the risks, the plans for my nurse 1:1 and they arranged for mummy to deliver some training to all of the staff on inset day.

I stayed with Nannie until mummy came home.

We went to Leeds for a haircut…

What a difference!!!

Mummy did the nursery training. It was a lot for the staff to take in. There are many risks for me at nursery; water, sand, glitter, play dough…..

Here is where things got a little worse! I was sick for a few days because of the build up of secretions due to hayfever. Because instead of a runny nose, I get extra Trachy secretions which meant mummy and daddy were pulling all nighters suctioning me around the clock. The build up on my chest was making me sick. Everyone was finding life a little hard!

We met a Auntie Nat Nat and Big T for a walk in Greno woods and dinner at The Old Red Lion – their treat. It was lovely, such a change and so nice to spend time with them.

We went to Hornsea for the day with Nannie & Grandad, the pollen count is meant to be better at the beach and we all needed a day to just shelve the serious stuff and just listen to the sea, get sand between our toes, collect pebbles and eat fish and chips, without a care in the world, and that’s what we did…

We had a sleepover at Nannies and Mummy and Daddy booked us a holiday to Center Parcs! Something to look forward to and keep us going. We can’t wait!

Mummy keeps telling daddy that we shouldn’t be stressed, for the first time ever we have no external influences on our life. No boss at work, no rules, we are in charge of our own destiny. If you wanna take a week off to go to Center Parcs, let’s just fluffin do it!

Daddy is way way busier than he imagined with his business and can afford to take a week off – so why not!

The only thing they can’t control is my Trachy life and they do a bloody good job of not letting it stop me, in this Month alone, a month where mummy and daddy have been on their knees, they have put wheels in motion for nursery, taken me to the beach, in the sea, swimming….all things that are difficult or not allowed for children with trachys. They really do need reminding sometimes just how good a job they are doing!

Work-life balance is improving! Daddy worked local so joined us for lunch…

We went to the wildlife park with Nicky and Jay…

Austin has started walking Beau with daddy at tea time, it melts daddy’s heart, they love it…

We have got sand at home, mummy bought a shallow storage box rather than a sandpit to eliminate risks for me, it will also keep the sand moist so it is not as dangerous…

Mummy bought us a different pram. This will be our 8th one now! The Bugaboo Donkey we outgrew, since then we have struggled to find one that works for us, the side by side buggy’s are awkward, the out and about is brilliant but we are squished together and don’t like to be so close, so aside from having two single buggies for when there are two adults, we go a tandem one to try. Mummy bought it cheap of a selling site to try. She stripped it off, washed the frame and put all the fabrics through the machine. We liked it, our own space, except mummy pulled out her knee and her body aches so much the next day after just a short walk with it…

Mummy hates it. It not only looks awful but it drives awful too, but it was the last attempt for her at being able to get out with us on her own. She is finding it so difficult not being able to take us anywhere on her own because we won’t sit in the pram side by side.

Nightmare!

Yesterday was mummy and daddy’s 6th wedding anniversary and they decided to take us on an adventure, our first train and bus ride!

We got the train from Elsecar to chapel town and then we had dinner at The Wagon & Horses, played in Chapeltown Park and then caught the bus home.

Austin screamed on the train, he didn’t like it, and it took him a few stops to get used to the bus too.

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2 Replies to “Off trach.”

  1. This blog is so beautiful. I just discovered it and it’s inspiring – I have a daughter, who is fine, but due to complications during the birth I have a nerve injury: in a wheelchair for a time and slowly improving. Our family were hit hard, so I know how that feels, and how hard it is to keep the fun going for your kid/s when you’re struggling yourself. My best wishes to you all – I will keep reading.

    Like

    1. Sorry to hear of your struggles and thanks so much for your comment.

      We hope you manage to make the most of the sunshine and make some great memories with your daughter.

      You’ve got this mama!! 💪👊🏼

      Like

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