Do they know it’s Christmas time at all?

Please Note: due to circumstances which will all come clear in the following few blogs, we are running behind on blog posts. This blog was started before Christmas, edited during christmas and is now being finished the middle of January. It details the time 29th November – 23rd December. And yes, editing it when the emotions are not quite as raw, is interesting to say the least.


It’s been a while since our last blog, in fact the last blog posted was from Mummy (Mum Therapy) and after writing about her difficult day, she wrote ‘if those 2 pound 26 week prems can manage everything that is thrown at them, then I sure as hell should be able to’….she was obviously referring to us. She does such a good job, and only those on the inside could possible understand the day to day challenges she faces, but actually, the truth is, she hasn’t been ‘managing’ it very well of late. She has ran out of steam, she is an emotional wreck, she is riddled with anxiety and the past haunts her (& daddy) every day. She is usually such a positive person and has the strength of an army, but nobody is perfect and nobody is superhuman and actually, everyone breaks sometimes. So hopefully this blog will give Mummy some ‘woooosh’ just in time for that guy who everyone is banging on about, ooooh….in fact, guess what, we saw him today for the first time, and his elves. But we will blog about that next time.

So, since the 29th of November, where have we been, what have we been up to? The truth is, not a lot. We have been prisoners in our own home, in fact, ironically, prisoners probably get more fresh air and more visitors than us, there is no wonder mummy has been on the edge.

We did however, do lots of playing nice at home in our playroom.

Mummy literally struggles now to get out and about with us. We can’t do play dates, soft play, baby groups because we still aren’t ready for that, the risk is still too high and our immune system not ready. Whilst we have to build up our immune system at some point, the risk of getting poorly and hospitalised when we are trying to meet the 9 months since last hospital admittance target in order to get me to theatre for a possible trachy decannulation (trachy out) is just far too high….in fact the pressure to keep us well is off the scale….but yet Mummy struggles to take us even for walks, because we hate being in the pram, we fight, and she cannot manage a walk with us both by herself. We are always so miserable in the pram. Mummy enforced a little walk though because it was the Mates of Milton meet, to put Christmas lights up and she felt bad she couldn’t help, so she took us on a walk to say hi and show her support that way…

Austin learnt a new trick (ironically this is how Mummy felt doing her Christmas food shop)… Austin pulled my trachy out (AGAIN) and this time, Mummy really struggled to get it back in, Nannie came and it took Mummy above an hour to get it back in because I was hysterical and wouldnt be still. Mummy was beyond stressed, singing ‘hes got the whole world’ and pleading with me in serious desperation, poor Nannie had Austin upstairs and had to listen to Mummys tears, desperate pleas and failings at getting my airway back in tact, but yet not being able to help.

No sooner had Mummy managed to get it in and tidy away the medical equipment, she was frog marching Beau to the groomers. Non-stop! We went later to collect her, it was cold so Mummy wrapped us up in blankets…

Then when we got home Grandad visited us because it was Friday.

Our friend Emmie turned 1 and she had a soft play party. Mummy decided that because the soft play was hired out exclusively for Emmies party, we could risk it, we anti-bac’d our hands, Mummy and Daddy were extremely cautious and we absolutely loved it, even Mummy and Daddy enjoyed themselves, we had so much fun with all of our friends we havent seen for a long time and being able to do something normal, with normal kids, normal mummy friends and just be normal. Here are some pictures….

Jonah visited with Auntie Kerry & Uncle Tim. We walked to Elsecar Park, had dinner in the cafe and played outside. That was lots of fun too.

Nannie visited with new food for us (plastic)… We went out cruising to the park, we did donuts around the playground and played our tunes out loud whilst we were hanging on the swings. It was soooo cool….

All this happened in the following 3 days since our last blog, ,and being so brave bit us on the bottom because, we got poorly. So the majority of time passed saw us ill.

It was the MOM light switch on, we went, except we were super grumpy, and Mummy was so anxious about the crowds and we didn’t like it either, the different noises and faces. So we hung around at the back of the car park in the dark and mummy put youtube (Peppa) on her phone to keep us calm. It worked, needs must. Possible perfect parents at the switch on may have thought Mummy & Daddy were terrible parents for doing such a thing, however, they don’t know our story and if they walked an hour in Mummys shoes, they would be begging for a 50inch flatscreen attached to the front of the pram, or actually, they would still be in their PJS begging for caffeine. Anyway…

My machine had also been knocked and accidentally turned on in the rucksack and so when Mummy & daddy came to suction me the machine was out of charge, and so we had to make a mad dash home so despite all of the hard work Mummy, Nannie, Grandad and all of the other Mates of Miltoners had put in, the crowds, the brass band, Santa, snow, dancers, singers……we had to miss all of it. And off we went home. Here are some pics though…

Later on that night, Daddy fell really poorly with a sickness bug, shortly followed by Austin, and then me and then finally (the army-strong mummy, once she had nursed us at our worst, gave in and allowed herself to catch in too) the 11 day bug turned our world up side down. As if we don’t have enough to deal with medically. It was unreal. Everything we had planned was cancelled. Mum was really upset because we go weeks without any plans, without seeing anyone, without leaving the house and we finally had things to look forward to and everything had to be cancelled. We had lots of poorly naps…

And lived in our pjs…

Beau went to Nannies for a rest because the situation was all too stressful for her and Mummy and Daddy were wiped off their feet and in bed for a sold 23 hours each (on seperate days of course).

As the bug sibsided, we were able to put up the tree, and snow came. We played out in the snow. It was the first time we had seen snow together, last time one of us was in Hospital and didn’t have a window.

Mummy saved some snow in the freezer and we played with it the next day when most of it had melted outside… Me, Austin and Mummy were really beginning to flag, the cabin fever, another world. We were climbing on everything, mummy began to get rid of the furniture bit by bit (so I climbed on the toys instead) and she began to re-decorate the play room.

Meanwhile we had lots of PJ days and lots of playing….

After two solid weeks of Mummy and Us being stuck in the house, literally not stepping out of the front door, not even to the bin, she could not take any more, especially since Christmas was looming and we hadn’t been able to get any shopping etc done. So she hatched a plan and braved Cortonwood at nap time. Mummy figured that if she drove out earlier than naptime, she might get to cortonwood in time for the nap, she could put us in the pram and push us until we dropped off (thats what babies normally do right?? Should work??) and then she could get some shopping done whilst we slept. Mummy was really nerbous and on edge, but….It only worked….Mummy was winning. at. life.

She also managed to call to the building suppliers and get wood to make our blackboard, and get it home with us in the car.

During this trip I also said ‘mummy’ out loud for the first time. Not bad for a Trachy child with no voice.

The playroom makeover took place, bit by bit each night whilst we were sleeping, we woke up to something new every day.

On another note, a while ago Mummy received a message via our facebook page, from a lady seeking help for her son. Mummy gets lots of messages from other mummys, interestingly most recently mummys who have got babies who are getting tracheostomys due to similar issues to me, it is probably because of the time of year, the weather and the bugs, lots of babies are needing help. Anyway, so this lady was in Mongolia. The healthcare available there is much different to here and her Son has limited supplies. They couldn’t afford to buy him the things that he needed, and in short, had poor living conditions for a child with a trachy, compared to what I have here in England. Much higher risk of infection. The sad thing is, here, any surplus trachy supplies cannot be re-used, taken back etc. They are for the bin, because that is the wasteful policy that our NHS has, understandably for infection control, but still… And so Mummy decided to send over some of our surplus supplies. The lady that Mummy messaged (at ridiculous hours because of the time difference and only when the non-english speaking lady had her translator available) had been trying for 3 years to get things that her son needs. She was desperate. When mummy said that she would send over some supplies, she was crying and worrying about if they could afford the postage, Mummy told her that the postage was FREE, Mummy would pay, and she was hysterical crying because she was so happy and her and her husband didn’t have to worry any more. And so, the parcel arrived and the lady sent a picture of her son, he kissed the parcel when it arrived and they are beyond grateful for the difference we have made to their life. The lady was happy for me to share a picture of her son, we sent a couple back and forth and tried to communicate with emojis because the translator lady wasn’t always available. The lady was literally elated by a few filter/noses – there is one stuck between the paving flags on our driveway that I threw out of the car ages ago and Mummy hasn’t dug out yet. I pull them off every 5 minutes and suck on them, Austin steals them, he thinks it is fun. We are really wasteful when you bare in mind that there are children not that far away who have had 3 swedish noses in the past 6 month and are having to wash them and air dry them. Imagine the bacteria. Anywhere, here he is, little cutie…

Grandad visited again on his Friday ritual…

Mummy & Daddy decided that now we were over the bug, we needed to get out this weekend and so we decided to go to the Yorkshire Wildlife Park Christmas Fayre. It was cold, really really cold but we wrapped up on our trikes and braved it. We were probably there less than an hour but it was lovely to be outside, experience some Christmas festivities and eat gingerbread with fake snow on our faces. It is really difficult seeing and hearing about everybody elses Christmassy adventures but we have to reign in our emotions and remember that our time will come, and when it does, we will make up for it ten-fold!

Uncle Peter and Sue Sue visited before their big trip down under. He always tells Mummy off for taking pictures of him but we love them both so much and always have fun when he visits and Mummy doesn’t want to miss out on capturing those special memories..

Beau has found a new hiding place…

And we still continue to play tricks on Mummy in a morning when she is dressing us. Taking our socks off and hiding them and watching Mummy lose her mind trying to find them….priceless.

The good thing about having a new sofa in our playroom is that it is perfect for family cuddles…

One of the issues that the new playroom doesn’t solve, is Beau jangles barking at the post man and waking us up at nap time. An example of this (and it happens often) Mummy puts the blinds down in the living room, puts Beau over the baby gate into the extension, puts the radio on (all techniques to stop Beau seeing or hearing the letterbox, the cars on the front, the neighbours coming and going)ย  and then gets Austin to sleep in her arms, carries him upstairs, over the baby gate and places him in the cot, trying her best not to wake him, all the while I am at the baby gate at the bottom of the stairs, shaking it and crying because im also tired and Mummy has left me on my own and gone upstairs with Austin (Yes, im a toddler, im irrational) and then Mummy comes back downstairs, puts my suction machine and a catheter on the floor by the sofa and cuddles me to sleep before suctioning me,ย  climbing over the baby gate and taking me upstairs (quietly as not to wake Austin) and then putting me in my cot. She then sneaks back downstairs and enjoyed the 20-30 minutes she might get before Austin wakes up. However, quite often, something causes Beau to bark and we are both up sooner than this. Unless, however, like recently, Mummy spied the red Royal Mail Van and managed to deposit me in my cot, leg it downstairs, hurdle 3 baby gates, put beau in the garden and then hurdle 3 baby gates back to the front door to answer it before the postie knocked, receieve the parcels and let beau in before she is any wiser. Winner!

The postie brought our very own Christmas Tree…

Mummy delivered our Christmas cards whilst we were napping in the car the next day, it is much easier to nap us in the car, or so mummy tells everyone. What she means is that she gets more quiet time to herself, she just has to sit still with the engine running for what feels like a lifetime. Back to the Christmas cards – Mummy put lots of effort into us doing those. Whilst fighting Austin to stamp his foot multiple times, I ran off with the paint and whilst stamping my foot, Austin crawled all over the ones he had done and smudged them all. Its all fun! People loved them anyway!

Mummy decided to order a new table and chairs the week before Christmas, (I know, crazy) and upon delivery, Mummy realised they had sent the wrong one. Mummy rang them and they said it would be mid-january by the time they got another one out and collected the wrong one which they had sent. Mummy was furious, so she drove us (two hours) to go to the factory to drop off the wrong one and collect the right one, it was an adventure that made our day go quicker and although that wasn’t the end of it as we had issues with chairs aswell, which meant Nannie Newbs had to drive to the factory and collect some later that day, it was possiblyย the straw that broke the camels back and led to Mummys meltdown and her two hour drive around the world in her car, with Auntie Chloe, sobbing her heart out and spilling all emotion whilst we were fast asleep in bed.

Mummy told Auntie Chloe that even though she has so many amazing friends and family around her, she has never felt so lonely and that she struggles seeing everyones amazing life, doing all these lovely Christmas things with their kids, having their Christmas nails done and going on their Christmas nights out, when we are just trying to survive another day and that nobody seems to recognise just how difficult that is, because we look so good on the outside. Mummy tried to explain how the pressure to keep us well is immense. How we feel torn between enjoying life and hiding away from bugs so that we have a life, in that we can hopefully stay out of hospital and get my trachy out. Yet being stuck in the playroom for the best part of 6 months, is not healthy for anyone. People think mummy and daddy are crazy because on the handful of ocassions they have had a few hours / night off, they haven’t done anything nice together, they have eaten and had an early night, because actually, its not about the niceties, it is about the necessities, getting enough respite to battle on a bit longer.

Auntie Chloe is one of the few people who kind of understands our family, however nobody truly understands, nobody really knows what goes on at number 46, the hardships that Mummy & Daddy face on a daily basis, the pain on the inside, every day. People see that we are so beautifully happy just being us and enjoying eachothers company and savouring every second. living and breathing family life because it is what Mummy & daddys dreams are made of and it was almost taken away so many times, they just live for it! However, sometimes the realities are just too much. Ironically if we shut off from the outside world, cut off from those friends and family, those bad days wouldn’t come, but in reality there is always a reminder that although we are beyond proud of what we have, beyond lucky to have what we have got, we are often reminded of what we are missing.

On Friday, the last day of term,ย  Auntie Vicky and Lucy (& Baby Frankie) visited – at different times, but as Mummy was sad, they didn’t want to leave her and so there was a crossover and neither left until Daddy arrived home from work. Me & Austin were a little bit grumpy too and had a little fight and pushed all of Mummy (and Auntie Vicky & Lucy’s) buttons and both Auntie Vic & Lucy said that they have no idea how Mummy does what she does every day, and the truth is, even Mummy doesn’t know how she does it, because she wakes up every day knowing that she has given up all that she is, given us all that she has and yet she continues to find it from somewhere and gives her soul to us on a daily basis.

Yes, thats Motherhood, but just take a second to consider the long long road of IVF, 99 days in NICU, the stress, the sleepless nights, the 6 months of hospital stays, the road to becoming a carer for two disabled children, not just a mother of twins, doing this all without carers, with only a handful of breaks for a couple of hours here and there and a few nights off to catch up on sleep, and then facing 6 months inside, most days without seeing another adult between the hours of 7:30 & 5:30 and losing the only thing she had left – independence. There is no wonder that Mummy is on the edge.

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