Pot Holes and forward rolls…

July has been a difficult month thus far. I’ve lost count of how many times i’ve said ‘I Quit’ ‘I’m done’ ‘I can’t do this anymore’…

But as today is the 16th, I have made it half way and I can only imagine the second half of the month will be easier, because, well, it certainly can’t get any worse.

I’ve had a lot on my plate recently; this time of year is always stressful as I organise the local gala which has gotten so big that its almost beyond me, this time of year is also full of appointments because it marks the next year of our actual due date and our discharge date which means that when we are seen by specialists annually, or every 6 month, it falls in July.

However, aside from this we have also had all of the roadshow circus that goes along with sending Rory to nursery, and especially now that we are moving from the care agency to hiring our own PA and from one nursery where we have been over a year now, to splitting across two settings, one being completely new. So…we’ve had meetings upon meetings, paperwork coming out of our ears, tube changes and training sessions too. All of which cause Rory, and me, great anxiety and stress.

The first week of July saw us visit hospital for a review in cardiology, which ended in another discharge (Woop Woop) one less scar of prematurity to carry around with us. It also saw the new nursery visit the current pre-school to see both boys in setting and to see the logistics of Rory with his tracheostomy. I met another twin Mum who reads the blog and my Mums The Word Column in the mag and got in touch. We had a great chat in Costa, its always emotional when you realise you have reached out to someone but also that finding someone on the same page is relief beyond measure. This week ended with Rory being sent home from nursery because he was sick. My head was spinning from rushing here there and everywhere, having twins in seperate places, feeling anxious about first impressions and getting everything right for the boys new school.

Ash was away all weekend and you can read about that here!

The second week was even more stressful than the first week and given that I had managed 0 hours to work down my to do list to prepare for this second week, I was drowning. Quick. Especially as I lost my weekend and my Friday with both boys coming home from nursery. Also, bed times have become a nightmare, they have for some strange reason crept into the 8th hour, pushing 9PM and then I fight between still working for a few hours  and going to bed late, or going to bed on time and getting nothing done. When they decided to drop their naps last weekend I thought that might be a sign, no napping, reasonable bedtime. Pffft! If only it was that simple. We now have no nap and a late bedtime. Where has this energy arrived from?

So in the second week we had; Speech & Language visit Rory in pre-school, I had a meeting with the Assistant Head / nursery teacher and SENDCO at the new school then I delivered a training session after school to the full nursery staff team and the Head Teacher, all about Rory and his trachy. Then we had the community nurse team come out to observe Jaime (Rorys PA) observe me doing tube change. It was a tough one, left me in tears, and resulted in Austin staying for after school club because we were running half an hour late.

Can you see why I have been so stressed? The pressure to ensure all of these things are in place before the end of term; risk assessments, care plans, trained staff members, equipment in setting….

But also, putting Rory through tube changes which he hates, and fighting with him, its heartbreaking. But one of the biggies for me to conquer this year was for Rory to have consistent attendance at nursery because he had been let down so bad with nurse cover, and it has been a huge huge huge hurdle, getting the necessary people involved, taking it to panel for a decision, sorting relevant paperwork and getting everyone trained up. Its a huge huge deal, and all on my shoulders. I’m certain people will be under some illusion that we get lots of support – we don’t. I will often say, I am not sure how parents who are not like me, would manage. Thankfully I am used to doing this kind of stuff from my work-life, but from the start of Rory going to nursery last September, it has been led by me. We haven’t seen the community nurses in well over a year and actually, when they arrived to do the training with Jaime, they asked me questions like ‘why has he got his tracheostomy?’ ‘what size tube does he have?’

Now don’t get me wrong, i’m sure if I rang and asked for help they would step-up, we are quite self-sufficient, but I do have a lot to do to ensure that Rory gets the same chances as Austin.

On top of this is rota’s for the nurses, sending these to nursery, fighting to get shifts covered. Like on Tuesday when we were on our way to nursery to find out with ten minutes notice that the shift wasn’t going to be covered, having to pick Nannie Di up so I could drop Austin off and bring Rory back home with me.

We were even discharged by Speech and Language, which I tried to stop happening, but they don’t feel that they can help Rory. Rory can’t speak, doesn’t engage with makaton or PECS. We are starting to notice frustrations in his inability to communicate in details, other than gesture. Thankfully we have engaged with Joanne Jones since January, we have paid for her support and she will continue to support us but if we hadn’t have done this, I dread to think.

As the end of term draws near, I have not even thought about the six week holidays, purely because I have been to busy sorting everything for September, but I do know that I feel much less anxious than I did, much less stress. The important meetings are out of the way, we just need to complete Jaimes training and get the final paperwork processes in place for us to employ her from September and hope that we can roll with it from the very first day back. No pressure!

Thank you to Faye, Lynsey, Vicky, Claire and Jaime for holding me together. Rocking up with a minutes notice, hearing me out, wiping my tears, talking me down from the drama’s and surprising me with flowers. Sometimes just having someone there helps.

Thanks to Ash (even though you work too much) and my two brothers Craig and Calum for having Austin – that helped hugely and you did an awesome job. Love you!

Snapshots from July So far;

Nannie Di’s after school club..

Whilst Rory was at the hospital…

Don’t even know how you would caption this one…

We’ve had BBQ for tea nearly every night…

These two have really started to play and interact with eachother…

Austin learnt how to pot wash with our ‘helper’…

Austin helped our new dog groomer, Valley Professional Dog Grooming…

Me and Rory enjoyed lunch together. Love Bombing one twin at a time…

Rory rode shotgun and even had a Maccys…

It was Pirate day at nursery, one wore fancy dress (but took it off when we walked through the door of nursery) and the other refused…

Austin went to Skylahs party with me…

Whilst Rory went to the park with the lads…

Welly life is taking over…

And these two are just loving eachother more every day, I think these love bombing sessions, 1:1, time apart are really doing them both good…

 

 

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