Wrecking ball

‘I came in like a wrecking ball’ quite aptly played via Alexa as I closed the front door after the nursery run. That empty feeling I always get when the boys aren’t there but yet that empowering feeling that we are facing a new year, a new term, a new set of opportunities and if we’re honest with eachother, a refreshing child free couple of hours to crack on and sort the menagerie of ‘things’ that make their way through our front door at Christmas.

The boys were excited as they made their way around the school yard this morning, just looking at them I can’t quite believe that this is it. Term 2 of their final year at nursery. They are getting so big, and they are growing so fast, not just in size but in personality, in character and both in strength, resilience..in a measure I never dared to believe they would have.

Again, if we’re honest, there were many many times I daren’t believe they would keep breathing until the end of the week, never mind make it to full time school.

I think this Christmas has possibly been the best we have had so far. It’s all relative, and it probably wasn’t as #perfectchristmas as social media pressurises us all to have, but for us, in our world it was good.

Here’s our top 10;

  • Taking Rory to Wentworth whilst Austin went swimming with Grandad. Being able to give him 100% of both our attention and enjoying the normal things like the Christmas displays, cake in the cafe and a ride on the carousel.
  • Austin allowing us to put gloves on him for the first time ever, his concentration trying to get one finger in each bit and then enjoying his achievement so much that he ate his dinner with them on.
  • Receiving the picture of Austin and Rory at nursery visiting Santa, possibly one of the best pictures we have. Brought tears to both me and Daddy.
  • The family time on the Santa Boat that Nannie Di booked as a surprise. Maybe the most ‘festive’ we felt all holiday even if the boys were ready for jumping overboard by the end.
  • Christmas Day. Always overwhelming for Me and the boys but it was nice being together and watching love pour out of my Grandma as she watched her beloved Great Grandchildren playing.
  • Second Christmas Day with Daddy’s family. Surprising Nannie Taylor with a life-size Cliff Richard and having a guest over from Holland who Uncle Paul was hosting.
  • Taking Rory to Jump Incflated whilst Austin was at swimming with Grandad and watching his face as he took on every challenge, the biggest climbs, the biggest slides and the biggest smile.
  • Austin’s new routine with Grandad, swimming on a Sunday morning. He has grown in confidence so much in the water and Grandad enjoys their time together as much as Austin. A time will come when Rory can have that too, but he gets Mummy and Daddy all to himself and an adventure all of his own.
  • Spending time with friends, Center Parcs with Lucy and Frankie, Auntie Vicky, Uncle Nath and Erin hosted our Christmas get together this year which was lovely, and we had a fab day out at Cannon Hall farm with Kerry, Tim and Jonah.
  • We enjoyed a trip to The National Railway Museum at York. Austin was beyond excited at all of the ‘choo choos’ and Rory enjoyed exploring too.

Looking back at 2019 it wasn’t a bad year at all. We achieved much of what we set out to do. Ideally we would have waved goodbye to the trachy but we maintained Rorys health, were discharged from more clinics and had nothing but positivity from consultants.

We tried out Kixx, and whilst both boys did this on Sundays during our membership, Rory wasn’t quite ready for the structure because his communication and interaction hindered his ability to keep up with the instructions, but Austin loved it and now takes part once a week at nursery when Coach Nath comes in to do a session.

We did more swimming together as a family, and whilst we haven’t continued this through winter with Rory, Austin has started his new swimming routine with Grandad which will hopefully mean that by the time Rory has his tube out and is able to fully participate, Austin will have some level of independence in the water.

We enjoyed lots of family holidays and adventures and days out. Made lots of memories and experienced lots of things.

The TWO HUGE ACHIEVEMENTS for 2019 though have to be;

  • Our work with Joanne Jones, Speech and Language Therapist. We found her in January 2019 and have worked with her most of the year. She knows Austin and Rory inside out and has worked closely with Me to understand Austin and Rorys speech, language, communication and interaction needs better than any professional. I have completed all of the courses and done lots of research and feel empowered by this journey. Austin wasn’t even babbling or making much sound at all this time last year and is now a chatterbox. Sometimes he gets so excited that you can’t make out much of what he is saying, and lots of his speech sounds aren’t clear, but you can have a conversation with him and he has some really great things to share. Rory didn’t make any eye-contact or interact, turn-take at all. He wouldn’t acknowledge anyone else in the room or respond to his name. He will now respond to his name and follow simple instruction when given in the right way. He gives amazing eye-contact and communicates really well using gesture. The boys have developed at such a great speed and it is all thanks to the work that Joanne Jones has done with us. I am beyond thankful that I took the jump this time last year and worked so hard to get to this point. Who knows where we will be this time next year?
  • Fighting for and overcoming challenge after challenge to secure Rory a full time PA for school as opposed to relying on the care agency, thus meaning Rory has consistent access to his education and consistency in the care that he receives and again this has been a massive gain on his part. With me as employer, having a fully trained staff member who is great with Rory is so much better than what we had; hit and miss agency carers, not knowing who was working that day, cancelled shifts with 10 minutes notice and lots of missed nursery sessions.

As always it has been a fight, making sure Austin and Rory have every opportunity and never accepting anything less than what those boys deserve and even when we as parents are on our knees, we dig deep and we keep on giving. Securing consistent nursery cover was one of our main priorities last year and it took us the most part of the year, lots of training, lots of meetings and difficult situations, lots of paperwork and stress (mostly for me) but we got there.

So what do we have in store for 2020?

For Austin we want to continue with Kixx and Swimming and we want to work really hard with Joanne Jones to support development of his speech sounds. We also want to support his sensory issues with food and try and extend his diet passed mini cheddars, crisps, biscuits, dry cereal and anything else that is beige, dry and crunchy.

For Rory the biggie is hopefully decannulation and securing a future for him without his tracheostomy, but as that isn’t something we can control, we will be focusing on continuing to work on his communication and interaction; we have had promising speech in the form of actual words from him in recent weeks which gives us hope. We also want to crack toilet training and build up his stamina when walking.

There are plenty of things in the pipeline for us as a family but in the main part, these are the priorities and this is where our biggest efforts will be.

If you think you can help us in any way, then by all means get in touch. We are always open to suggestions or support from those who have walked similar paths.

Wishing you all a Happy new Year, all the best for 2020,

Kelly

 

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