Some reflective time

So the end of 2018 is here

The thought of looking back over the year brings mixed emotions.

At the beginning of the year Oliver couldn’t crawl, weight bear and definitely not pull himself up. We end the year with a speedy crawler that enjoys being on his feet (with plenty of assistance but he is determined to get there on his own)

He also didn’t really sign or communicate too much and often got frustrated because of this. His frustrations are still there but he’s now trying to say things and will sign several things to us. Sometimes this is a guessing game as he confuses signs and has made a fair few up himself. His speech is still delayed but coming along nicely. Everything he can’t say is woo woo. For those that don’t know our dog is called Roo. Woo is Olivers best friend, partner in crime and often the follower of Olivers mischief. She also doubles up as a hoover when he throws (much to our delight) his food

We’ve had so many conversations over the year about how well he’s doing. How he’s exceeded our expectations and the point we are at now we never expected to get here so quickly. That’s not even between Mike and I, that’s with health professionals, family and anyone else who’s directly involved with him.

This however doesn’t mean that it’s come easily. There’s been tears. Lots and lots of tears. Many times where we’ve both been fed up, Olivers been fed up and if it were possible to call it a day and press a restart button then we probably wouldn’t be far off doing it

As far as breaks and rest have gone this year Oliver probably doesn’t realise that time off work should be time to do fun things. A week off in May he had impetigo so we were housebound because it’s contagious. We tried to go away on our first family holiday and Oliver had other ideas and spent the first three days having seizure after seizure. Then Christmas holiday time….he gets chicken pox. So all in all on the resting front we’ve not really had much opportunity for that as the other allocated holidays in work went on appointments.

This in itself has taken its toll. In the new year we’ve agreed to start sharing out appointments. One thing I never write much about is appointments. I write positive posts about how well we’ve been doing. I did promise myself I’d write honestly and for the most part I do but I often skip writing a post when there’s no energy to even cook tea never mind put a piece of me into a blog. Over the year I’ve weaved at least full time additional working week into my four day working week. Early starts and late finishes. Working on my ‘day off’ That probably doesn’t sound like a lot to some people but trying to balance out being two different fronts in a day is exhausting. Working additional hours not to have extra time off but to go to an appointment and fight for your child isn’t the ideal.

Getting up as mum, dropping Oliver at nursery or with one of his grandads and then going to work. Being work me, taking work me’s head off and putting mum head on, going to an appointment and fighting for what he needs/what we want. Drop him back off, process an appointment and then fill everyone in on what’s gone on, answer questions. Get back into work me and finish the day off…come back and be mum again, then be a physio, do some more signs. Take him to bed. I’m not really too sure where I actually am in the story. All spare time is spent researching how I can help Oliver and then bathing and sleeping.

It. Is. Exhausting.

People often wonder why I don’t fill them in on every little thing that’s happened/going on. It’s because it’s exhausting. I appreciate everyone wants to know but mentally it’s not always the easiest thing to do. I’m not intentionally withholding information. I’m just waiting for when I’m in a place to pass information on comfortably. Sometimes I just don’t want to talk about it. We have on average 2 appointments a month, sometimes more sometimes less. They’re often like buses nothing for a while then three all at once. We already have four booked in for next year.

One of my New Years resolutions is to make more time for myself. For me to be me, that person I was before Oliver came along. It’s a thing a lot of mums struggle to do but I think that anyone that has a child with any additional needs, struggles with even more because of all the additional pressures of making sure you haven’t missed anything.

I’m looking forward to 2019, no new year new me here. Just another calendar year where I’m trying to find the right balance.