This weekend has been one of “those” weekends. You know, one of the ones where there’s so much to do and just not quite enough time to manage to do it all. A combination of birthday celebrations, performing arts classes, auditions and hospital appointments has left us feeling somewhat exhausted; but tonight, after a fun few hours with M, G and a group of their friends, I’m also counting our blessings.
It’s been no secret that M found last year, his first at secondary school, tough. The move into a school environment where his year group was considerably bigger than his entire junior school combined with family deaths and the inevitable challenge of his continued restricted diet left not only M, but all of us, struggling to find a positive way forward. 
Circumstances last year meant that we didn’t really do much to celebrate his 12th birthday, so I was determined to kick off his teen years in whatever fashion he wanted.
The celebrations started with an M-friendly pear and ginger cake with caramel buttercream icing on Friday evening to accompany his presents, which included the bass guitar and amp that he’s been yearning after for a few months. He had been slightly frustrated with Mike’s refusal to take him to look at guitars last weekend and was only marginally mollified by the promise to get up early this Saturday morning to visit our local guitar shop and examine exactly what was on offer. As you can imagine, his excitement in finding the guitar and its own mini amp waiting for him when he got home from Stagecoach 
was wonderful to see and we’ve been serenaded with renditions of both “Bohemian Rhapsody” and “Seven Nation Army” since late Friday night! I’m just glad the bass guitar lessons he’s been having at school appear to be paying off already and delighted to see him so wiling to practise in every spare moment.
However, the culmination of M’s birthday weekend came yesterday afternoon as we spent the late afternoon and early evening with a group of his and G’s friends. M had chosen a group of old friends and new, some from school, others that he’s grown up with and the best bit was seeing just how well these different strands of his life hit it off and enjoyed the few hours together. After lots of chat, M had decided he wanted to try his hand at an escape room and we booked 2 rooms at one of our local escape rooms sites. We amicably split into 2 teams, each with an adult and a mix of the older and younger children and determined to compete against the clock, rather than each other to escape our locked rooms.
I was impressed with how well they all worked together and certainly those on my team managed the frustration of solving some of the clues well, with only one of M’s friends needing some redirection and reminders to focus from time to time. 
We were lucky to escape with just 2 minutes to spare and although Mike and M’s team were not quite so successful – they had found all 4 keys, but failed to open the door in time – everyone enjoyed themselves and were ready to move on for a dinner to suit all dietary needs that were present.
The chatter, camaraderie and chuckles around the table were wonderful to experience and all the children were a delight to spend time with as they enjoyed their food and just spending time together. It was a wonderful way to celebrate M’s 13th birthday and I really have counted my blessings tonight that M has finally found his way out from the darkness of last year with the help of some amazing friends, who accept him for who he is and don’t see his health challenges as a barrier to their friendship with him. A perfect celebration with both new friends and old; and a combination of friendships that I hope will keep going for many years to come.
M-friendly apple and pear cupcakes, a batch of G-friendly vanilla cupcakes and I’m currently struggling with the chocolate brownie sponges that are refusing to be moved from the cake tins. There’s 2 lots of icing to sort out, decorations to be finalised and they all need to be applied to the cakes themselves, but I’m delighted to find myself spending this winter evening like this.
that my sense of humour is very much in tact. It was with a wry smile that G and I summoned a black cab to take us to GOSH on Sunday from the train station, not for a visit to a hospital-bound younger brother, but this time for the final 
It feels even more special this year as my baby girl, my precious first-born, hits the start of her teen years and all the emotions that those have to bring. In the proverbial blink of an eye, my December 2003 baby is turning 13 and in front of me stands a beautiful young lady, with a little more attitude and grumpiness than I would have chosen, but with a kind heart, generous spirit and the most loyal friendship on offer that you could ask for. She is growing up fast and we are quickly losing sight of the easy-going, chatty toddler that she was as an opinionated, independence-seeking, moody teenager appears in her place. She can slam doors with the best of them and her stomping feet can make it feel as if the kitchen ceiling is about to come down at any moment – and indeed it pretty much has done. These days she brooks no nonsense from her little brother and yet she will defend him to the hilt when it comes to it and is there to comfort and hug even when he doesn’t want it. She’s looking to make sense of a world that often doesn’t and is trying to understand how to interpret the nuances when it would be so much easier if everything was clearer defined in black and white. She can be the much-needed splash of colour in a reality that is all too often dark and depressing and yet will quietly fade into the background when everything gets too intense and too much. She is an incredible blessing to all our lives and we are all so grateful to be celebrating a life that is so much better for the 13 years she’s been an integral part of it.
Do you remember that long, 
I have to confess to keeping it simple on the big day itself as M had huge ambitions for the day of his party and so a cake-stand full of 
Party booked and themed party favours ordered, next came the matter of the cake. For once I decided to learn from previous experiences and didn’t leave decorating the cake to the last moment as I usually do. The prospect of a 2am finish really didn’t appeal, especially if I was battling with creating the perfect bearded dragon cake topper and so planned to start a week earlier, with the hope of finishing at a much more reasonable time the night before. I found some images on-line and, with “Les Miserables” blaring in the background, carefully copied the individual body parts before attempting to put them together. Given Leo’s rather vivid orange skin tones, I chose to make a bright orange dragon and whilst it might not have been the most realistic coloured one, I was thrilled with my crafted copy. I carefully covered and stored it away from peeking eyes, determined that M would be left guessing until the last possible moment.
we decided to hold a small event on Sunday afternoon for G and invited her 2 friends to M’s party in the morning as well as 1 of his to hers in the afternoon. Given it was a very much belated birthday celebration, of course we needed more cake and I decided a batch of 
Sunday dawned with the most glorious weather and an anxious countdown to the party starting by M. The 8 boys and 3 girls spent their time racing around our back garden, bouncing on the trampoline and admiring the varied animals that arrived to entertain. M, of course, held all that he was allowed and G beat her fears to hold the tarantula, despite shaking hands and the occasional tear. The cakes were greatly received and M declared my bearded dragon the “best cake ever!”
7 years to diagnosis 