Cian was asked a week or two how old he was going to be on his birthday, to which he replied “five alive”.
He was making reference to the soft drink, probably not aware of the significance that the statement would have to the rest of us who interpreted it in a totally different context.
We all take birthdays a little bit for granted as up to a certain point making it to the next one always seems inevitable. The thought of Cian not making it to his fifth birthday was inconceivable before late November; but during the dark days in mid December I would have given anything to ensure that he would get to celebrate his special day!
As Cian has improved in both body and mind over the last few weeks, we have been slowly gearing up to his birthday. We couldn’t organise anything concrete as we couldn’t predict if Cian would be in the celebrating mood, or where he would be spending his birthday.
For a couple of weeks Cian had only been spending a few hours at home on a Sunday, but all of a sudden everything was starting to fall into place this week. Cian’s specialist profiling bed and mattress was delivered on Wednesday and all his medical supplies and feeds arrived on Friday. This meant that the only thing stopping Cian from spending a night at home this weekend would be his health.
There was nothing to fear in that department, as Cian continues to gain in strength.
We got him home late on Saturday morning and just spent the
afternoon spending some family time together watching TV or playing a few
games. Most people wouldn’t regard this
as anything special, as it is considered normal... but normal for us is
special; even to the point that the kids were arguing about what to watch and
The evening soon arrived, and although it was strange putting Cian to bed in his new downstairs bedroom, rather than in his old room; he was excited and very comfortable thanks to new WWE Wrestling bedding from his Uncle G.
He didn’t find it difficult or fight falling to sleep, so that gave me and mum some time to put up his birthday decorations and make final preparations.
Mum slept downstairs with Cian, as there is still lots to do in terms of giving him medications and food supplements overnight.
The fact that Cian’s first overnight culminated with him waking at home on his birthday was pure chance, but a fantastic sub-plot to his journey; and his birthday being Valentine’s Day just makes it a little more special.
He had lots of presents to open and a little treasure hunt
for him and his siblings to do. It is a
little more tricky and the hiding places a little more obvious when trying to
organise a hunt for a wheelchair-bound child!
We only had family over during the day, due to being restricted on time for organising anything more elaborate, and that we were advised to avoid large numbers of people, especially given that Cian was resuming his chemo a day later.
We have to thank our LATCH Social Worker Kathy, as she
managed to organise (via Little AJs Parties) for 3 Paw Patrol mascots to visit
the house (Ryder, Marshall and Skye). The funding for the mascots came via The Ethan Perkins Trust, another amazing charity based in Swansea who have similar objectives to what we hope to achieve.
All the children had a fun time tormenting the mascots and singing happy birthday to Cian.
It was a shame when it was all over, as it was time to get Cian prepared for going back to hospital. What’s good is that although Cian had a fantastic time at home and celebrating his birthday, he did not complain about going back to Noah’s Ark with mum.
So today I had to get Dylan and Bethany to holiday club, as it’s half-term. We could have kept them with us for the week, but decided to keep them in the routine that they are used to and we will let them come to the hospital on Thursday night and spend Friday as a family. Otherwise they would get bored, even though the ward has lots of things to do.
When I got to the hospital Cian was in the middle of his physio. He had just wowed some of the ward staff and other patients in his skills of using his walking (Zimmer) frame, and he was now standing playing with his wrestling figures. The amount of physio support he is requiring to stand upright is starting to become less and he is showing signs of more control when moving his legs... although he does get tired very quickly, which is not surprising.
Even though he asked to finish physio due to being tired and achy, that didn’t stop the physios sneaking in another session in the afternoon, just to keep up the momentum and progress.
I always think the first is either Vin Diesel’s sister (Vin Christine), or a very posh French wine.
Dylan and Bethany had a visit this evening from Anne the play therapist, from the Kids Cancer Charity. Just from the occasional eavesdrop I can tell that she is encouraging them to ask questions and open up (without getting upset)... plus they really enjoy her company and the games that they play with her. It is an amazing resource that I hadn’t appreciated the level of benefit that we will all gain from!
The update from the ward is that Cian fell to slepp saying that he “loves his chemotherapy” whilst cuddling into Chemo Duck and other soft toys. It’s fortunate that Cian isn’t experiencing any of the immediate side effects associated with chemo, but he is certainly going to feel it when they kick in next week!