Aside from our blog on the 12th September to mark the boys first visit to their new nursery, we have had a blanket silence since the 9th of September, for many many reasons.
Let’s just say it has been a very difficult month. With lots of ups and downs.
Today marked only our 3rd full day at nursery of the term, out of a possible 13. I’m not surprised by this, if anything it just validates my response to everyone who ever said to me ‘what are you going to do with all of your free time come September’ and I laughed awkwardly knowing it was never going to be like that.
With hospital appointments on day 3 and 9, Austin being sent home poorly on day 6 and Rory on day 7, a poorly PJ day on day 8 and an incident on day 12. It has been non-stop.
We celebrated our friend Ben’s short but full 35 years of life last Friday. He battled cancer and although he won and trained to run a marathon – successfully, began working and playing sport again and even became a first time Dad to my God daughter Frankie, he lost his fight to Graft V Host disease which subsequently, after his transplant, took hold of his body until the very end. It didn’t however, take hold of his character, and my oh my was he a character, and watching his wife, my good friend Lucy, stand and speak in front of hundreds of people on Friday, with baby no.2 showing beautifully in bump and Frankie wandering up and down the church in a pink tutu and a football shirt proudly printed ‘Jebson’ was one of the proudest moments of my life. I have never felt emotion grip hold of my entire being quite like it before, it was something else. His service was everything he would have wanted, her tribute was absolute perfection. It has been a difficult time and amidst the chaos that is our crazy life, making time for Lucy and my precious girl Frankie is of paramount importance. #frankiefacetime is even more frequent than it was before, just now Ben isn’t eye-rolling me in the background or refusing to be on camera, or blaming me for the amount of toys Frankie has in the living room.
On Saturday we made the decision to cancel all plans and take some much needed family time at the seaside, leaving the world behind us. It was a lovely day, just the 4 of us. I think it is important in tough times to just take those important people, and just forget the world and do something out of the ordinary to refresh the mind. Seaside is the place where I can lose myself in the sounds and the atmosphere.
Thursday of that week we had also been given some other devastating news about Rory. We had our appointment with Dr Ravi, the ENT consultant who cares for Rorys airway. Given the good news that Rory had the ‘all clear’ from Dr C last week and Ravi previously telling us that if that was the case, he would be happy to reconstruct the airway, we were hopeful. Unfortunately that wasn’t the case, not because Rory wasn’t ready, or that he didn’t meet the criteria for the operation but because of theatre availability and staffing and other children being booked in for airway reconstruction and timings, meaning that it would be a strain to fit Rory in before November and it isn’t recommended to do it between November and March and so we now have to wait for March to come round again, to have the camera down to check he is still able to have the reconstruction and then hope that everything falls into place.
It was difficult to accept because this was no longer that Rory wasn’t ready. This was our 3rd attempt and we had never got this far before, and to fall at the final hurdle due to external circumstances outside of our control, well, there are no words really.
This effects our entire family unit in so many ways, most importantly Rory, who will see another winter with a compromised airway; that’s another difficult winter for us as parents, as carers, sleeping 4 hour shifts as we fight the winter bugs, suctioning through the night….Rory who will see another 6 months of his life pass, without a voice, without being able to just be like Austin.
Gone are those plans we had to buy a caravan and live the dream next year, because we will most likely spend most of the summer in hospital, or be close by to hospital as those early weeks / months after are always tentative worrying about possible re-collapse. Whereas we had thought that if he had the reconstruction now, we could have been on the home run come Summer, playing in the sea, paddling pools, water slides, all of the things we haven’t been able to do. Abroad holidays, you name it, we were writing Rory all over it!!
Gone are the plans for me to return to my career. Ok, so I don’t exactly sit and watch corrie on repeat all day and I do have lots of plates spinning but it is so important to me to return back to the career I worked so hard for and now I am facing another year without it. I was offered a spot teaching a year 2 class in a local primary school quite recently actually, and year 2 are my favourite year group, it was so so difficult to say no because the timing wasn’t right, and just confirmed my passion and my need to get back in the seat.
Rory will now be facing reconstruction in the summer before he starts full time school and that is going to be tough.
The right time for Rory was now. For our family – NOW.
We did however, see the Speech & Language lady in the waiting area, who worked with Rory when he got his trach and was in hospital for a while. She was so lovely and we both remembered her. She came and said hello and said that she had followed the blog (hi, if you are reading) and it was so nice of her to come and say hello. She asked if Rory had a speaking valve and we said that we had been discouraged by Ravi and also that we didn’t have any support from our local speech and language. She was really positive and encouraging and on the back of this conversation, we have an appointment to go and get Rory fitted with a speaking valve, which is he can tolerate it enough to breathe with it, we may be able to hear Rory’s voice sooner than we think.
I have been reading into the speaking valve process and it has scared me a little because it doesn’t make for easy watching. Fingers crossed though that for once, something goes straight forward and he tolerates it really well.
I named this blog with a quote from the FRIENDS theme tune, which was the last song played at Ben’s funeral and I find the words quite fitting, nobody told me life was going to be this way!