So, it has been 3 weeks since the beginning of term and our first official term at pre-school.
We always knew that it would be difficult, our first winter in the big world, with a new immune system to build, catapulted into a pre-school full of germs. It was always going to be challenging although we don’t think Mummy and Daddy after such a good (in comparison to the past) Summer, were quite prepared to hit reality again.
We have have missed 50% of nursery already so far. We have a cold, probably just the same as most kids this time of year, it is nothing for us, compared to the medical issues we have battled previously, but it is labour intensive, especially for Mummy and Daddy with Rorys tube.
We also knew it would be tough only having one nurse who could care for Rory, and that nurse (Claire) only working part time. The decision was made for Mummy to fill in and attend with us the remaining days, but it soon became apparent to Mummy and pre-school staff that mummy staying with us was actually counter productive. Austin relied on her whereas when Mummy wasn’t there he was super independent. Rory wasn’t gaining anything difference than he got at home. Mummy found it difficult to ‘disown’ Austin and let pre-school staff take responsibility for him, because she always had an eye on both of us and if she saw him making a wrong choice, couldn’t help but step in and not let him get away with it, equally pre-school staff felt that they couldn’t take full responsibility for him, because Mummy was there and so it became difficult from all parties and certainly not in the best interest for us.
Mummy approached the situation and had a conversation with the pre-school boss ladies and decided that they would only bring us on days when claire could work.
So the next day, Claire couldn’t work and so we went to playmania with Mummy & Nannie instead.
We had a few days with Claire in nursery this week, we really like claire, smile when we see her, like to hold her hand and walk into nursery. Rory especially has a cheeky smile for her. She is so good with us and almost takes on Austin too, keeping a watchful eye over him. We have welcomed her as part of our family and feel really priveleged to have her in our lives.
Here are some pictures from our nursery days with Claire this week…
On reflection, the idea of us only attending on Claire days made mummy sad. We had an opportunity, and yet again we were being held back, missing out, like we have done for the past 2.5 years because of our medical history which actually isn’t history, it is a stark reality of the current and probably the future too.
She was sat in the car park, watching the world go by, whilst we were napping, we had our uniform on, yet we were just going home, to the playroom where we have been almost imprisoned for so long and Mummy felt helpless. She reflected on her time in nursery and how soul destroying it was. Mummy having to push us from the car to nursery in our buggy because we aren’t quite there yet where mummy can manage us both safely, and carry the medical rucksack with Rory’s machine, and both of our school backpacks with lunch, spare clothes and nappies etc. Mummy hates it because we are big enough to walk, it isn’t helping us to learn and get any better, yet she just physically cannot manage it on her own. Mummy can see how under-developed our social and communication skills are, despite Mummy giving us her soul and more to help us, she has been unable to bridge this gap because she following medical advice and chose to keep us well and put our health first and because of this, we haven’t had much social interaction and communication with other children and therefore we are struggling. Mummy watching us in nursery hasn’t taught her anything she didn’t know, but it just rubs salt in the wound a bit more.
The paediatricians, the health visitor, the speech and language therapists are all ‘wow’d’ with our progress and have discharged us, we are moving mountains in comparison to the expectations, but yet mummy feels like we are so behind, and we are with communication and social interaction, yet there are reasons for it. The Speech therapist had a conversation with mummy last week when she discharged us, and mummy liked hearing it from someone else. If you tried to fit us into a box, like we always do, we could quite easily flag up areas for concern, except when you bare in mind and her words were ‘our complex case’ there are so many reasons, so many other things to consider and Mummy choosing to send us to nursery was part of the fight in facing these things we have been powerless to deal with, trying to help us catch up with the social interaction stuff and build on our non-verbal communication. And now mum is powerless again and the opportunity is slipping through our fingers. Mummy had a really bad day on Friday. She was really sad and despite knowing that Lucy had lots on her plate already, she knew Lucy was one of very few people who she could turn to, and so she rang her, cried, ugly cried on facetime and felt better for sharing.
Nursery suggested taking Austin on the days in which Claire and therefore Rory couldn’t make it, so that he doesn’t miss out and whilst mummy knew that was best, it broke her heart to think of giving one an opportunity that the other doesn’t have AGAIN! Not to mention the logistics of getting on there and not the other.
So mummy had us both in the back of the car, in uniform, all packed up, ready for nursery and had to somehow, tell Rory he couldn’t go, find someone to watch him, whilst trying to get Austin to go to nursery on his own, knowing that Rory, nor mummy or claire were going to be there.
We managed, but Rory was sad about going to Nannies on his own and Austin was sad that he wasn’t going to nannies. Then Austin was also sad about going to nursery on his own and cried at the door, and to be honest, Mummy cried too.
It is just an impossible situation!
Mummy is continuing the fight for more nursing staff, but unfortunately there aren’t any trained to a standard suitable to care for rory, especially in an environment where there are risks, such as water, sand, glitter.
The care agency trained up a handful of others, but they still have to do the training on rory, because a 2.5 hour classroom session doesn’t even scratch the surface. And so between Mummy and the case manager, they have put together a plan for the most suitable nurse, to come to our house and get to know Rory and Mummy to get to know her, if Mummy likes her then she will be invited to nursery to watch Claire and then eventually build up experience and training and eventually if mummy is happy, she will be able to fill in where Claire can’t work.
Mummy knows that it is going to be difficult to find someone as competent as Claire but she isn’t willing to lower her expectations because Rorys life is precious and caring for his airway is an important job.
Until then, Austin will go to nursery every afternoon, and Rory will go when Claire is available.
Mummy feels very deflated and defeated about the whole thing and finds it impossible to share it with people because even those closest don’t have any idea about the realities of our family, the day to day of trachy life, you can’t know unless you live it!
For above a week now we have had a cold that we can’t shake off, its nothing serious, we are managing it quite well. Mummy wanted us to have a nice weekend together so we went to the farm…
Rory was ‘poorly wet’ as we call it, which means he is coughing and choking on his secretions and needs suctioning loads to prevent him being sick. Trying to suction him when we are on the move is borderline impossible, especially in an outdoor environment like a farm. We were there less than 30 minutes before heading back inside to the warmth at home, chilling out and resting ourself better.
On Sunday, Mummy and Daddy had an afternoon of adventure and Nannie and Grandad came to look after us, with a visit from Uncle Craig and Uncle Calum. We are in the middle of no nap transition, and so Austin napped but Rory didn’t, and Rory didn’t quite manage to see the day out and fell asleep at 5!
Mummy and Daddy arrived back to an extremely grumpy tired Austin, a sleeping Rory who mummy needed to dress and do trachy cares on, without waking him and an Austin who needed to be put to bed – again without waking Rory up.
Sometimes, Mummy questions whether it is worth taking any time out at all, but both Mummy and Daddy had lots of fun…