To say I’ve been quiet recently would be an understatement. Being back
at work has been a shock to the system; the adjustment and struggle to juggle
everything is real. The mornings are getting darker, colder and I’m snoozing my alarm way more than I should be.
Oliver has been a busy boy. He’s had a standing frame delivered
which surfaced a mixture of emotions. Initially I was dreading
it, pre-empting him resisting it and months of painful tantrums and
tears. In fact, I was pleasantly surprised. He absolutely loves it!
Although it didn’t stop an uncontrollable sobbing session, but there were tears of
joy amidst the breakdown. It’s highlighted how much he wants to be in
control of his body, independent and doing things for himself. It really
has given me hope and potentially a new outlook that he could possibly do
things freely for himself. The strength is there he just needs to
learn how to use it and it’s our job to teach him.
We have also attended Oliver’s first time at a playgroup for children with
medical needs/learning difficulties. There’s only a couple of children
and albeit daunting it was a wonderful experience and definitely beneficial to
In all honesty, I wasn’t really sure how I felt about going. I am the
furthest thing from a social butterfly (more of an awkward sloth) and if
there’s a chance for me to not interact I will pounce on it. But, this
was for Oliver so of course there was no question as to whether I would go or
not. Oliver’s dad was naturally amazing and befriended everyone there anyway.
There was a huge sense of relief. Those nerves I had had when taking him to
other mother and baby groups weren’t there. Possibly because we were
going as a family this time, or possibly because I knew this type of group
eradicated any possibility of looking at every other child and feeling an insurmountable wave of jealousy whilst wondering why
Oliver isn’t doing what they are doing. Everyone was in the same boat; it
was extremely liberating not to have to beat around the bush for once or
sugar-coat Oliver’s conditions.
Don’t get me wrong, I did feel a sense of sadness after it had all sunk
in. I suppose it was another activity that made me realise that Oliver’s
difficulties are very real and very present, that they will be long term. That
this is our reality now and we need to embrace it.
However, despite having felt incredibly lost over the past couple of months, it did
certainly reassure us that we weren’t alone. Sure, we’ve had inundated
support from family and friends, but to meet other families enduring similar
struggles who we could be totally honest with was amazing. Comparing
medical notes and learning about other children’s needs without a second
thought was priceless.
There’s a hydrotherapy pool there which is
definitely Oliver’s niche. We took him swimming for the first time in a heated
pool when we went away over the summer and he thrived so much in the
water. I had wanted to take him swimming from when he was very little but
he had been too weak and poorly. It was such a special family memory to
make given the obstacles we have faced, and the fact he loved it so much made it
even more precious. When we returned home we tried taking him to a normal
pool but he couldn’t regulate his temperature so that didn’t work out.
Having this accessible facility there at our disposal is such a privilege and we are so, so grateful. He’s been twice now and combined with the standing frame we are already noticing an improvement in his abilities.
He’s also been three months hospital free (aside from routine appointments) which has made the world of difference to our daily lives. Dare I say that I am starting to relax a little and not always anticipate the worst? Possibly not yet, but things are looking up, and I’m trying my best to go with it and not dwell on the what ifs.
It’s hard work, really hard work, but we’re coping and managing as best as we can. The support of family and friends is second to none and we couldn’t be without them. Oliver is so happy at the moment despite trying to gnaw on anything and everything he can get his gnashers on. He’s growing up so fast and looking more like a little boy each day.
God, I love him.