18 years ago, as we waited for you to finally arrive, I wondered what I would want to share with you when this day came: what stories we’d have to tell, memories to reminisce on or words of wisdom for you to take with you as you stepped out into the adult world.
I’m still considering even now what knowledge I can usefully share, what words will express the depth of love we have for you…will always have for you and how we will support you as best we can as you find and take the next step of your journey.
I know to share that we loved you from the first moment we knew we were expecting you.
Felt awe when I first felt your kick, reminding me of your presence even though I was yet to meet you.
Fell more in love with you the first time I held you in my arms with a fierce protective love that only grew stronger as I fed and comforted you in the middle of the night; and every day since.
Worried about you, fought battles you never knew were there and made the best decisions we could to keep protecting you and allowing you to grow to be who you were meant to be.
I’ve watched you grow and change from a contented baby to a awesome big sister and now, on the cusp of adulthood, a young woman I’m proud to call my daughter.
Is that enough? I still don’t know, but as we celebrate your 18th birthday today, know that we love you, always have and always will.
Love you always sweetheart xxx
rather than at my desk. It doesn’t seem possible that today marks 35 years of living with what I previously described as my 
surgery to hopefully head off any further complications at the pass and so had it just before Christmas. It wasn’t the ideal time given the risks of heading into hospital during a pandemic, but the precautions taken were excellent and all went well. It did leave me with very blurred vision and sore eyes over the Christmas and New Year period, but I think I rocked the “sunglasses in December” look in style.
![IMG_0072[1]](https://7yearstodiagnosis.files.wordpress.com/2017/06/img_00721.jpg?w=152&resize=152%2C203#038;h=203 "IMG_0072[1]")
One of the unexpected advantages of living in lockdown has been seeing G and M start to take on a little more responsibility at home and honing some important lifeskills to see them surviving when they hit adulthood. I started with expecting them to fend for themselves at lunchtime, avoiding too many snack-based choices and including some healthier options to ensure a relatively balanced meal and, after a first week of moans and groans about what they were eating for dinner, sat them down to meal plan their dinners for the following week. They had to work together on agreeing meals that they would both enjoy and, where a compromise couldn’t be reached, settling on something that would be similar, but different. An example of this was the great lasagne vs. macaroni cheese debate, as G dislikes the texture of lasagne, whilst M would choose to eat anything but macaroni cheese. They agreed to disagree and so have one night in the week where they eat their own preferred pasta option.
Whilst planning their menu for the week ahead, G and M also had to take into consideration what staples we had in the house and what would need to be added to our weekly food delivery. We have been using a local food co-operative for well over a decade for our fresh fruit, veg and meats and they have been great at continuing to provide their food delivery service during the coronavirus crisis. The natural next step from meal planning was to get them more involved with cooking dinner as well, building off the 
G and M have an undeniable sweet tooth and the last few weeks have been a great opportunity for them to flex their baking muscles too. The interesting thing has been that they have worked both together and independently when it has come to choosing and making their sweet treats. The starting point has almost always been to see what recipes they can find on my blog and then checking if we have the ingredients in the kitchen cupboards. So far, we’ve enjoyed 
I am delighted to say that the afternoon tea was excellent and they managed to cater well for the gluten- and dairy-free requirements for G. The tea itself was unsuprisingly influenced by Christmas itself and included a skewer with pigs in blanket and stuffing for that seasonal touch along with some freshly baked mince pies shaped as miniature Christmas trees. G’s plate was just as impressive and, given how quickly she managed to clear it, evidently delicious. The cakes were not only gluten-free, but also vegan and looked amazing, though she commented that the dark chocolate tartlet was just a little too bitter for her tastes.
The rest of us enjoyed a fantastic tea as well, though we were definitely beaten once again by the number of cakes provided and so picked our favourites to sample as part of the meal itself. We treated ourselves with either a glass of prosecco or mulled wine to kick the celebrations off – water for G – which were the perfect start to a lovely day celebrating my Aunt’s 65th birthday. I was impressed by the food provided by No. 6Hundred, especially the GF/DF offerings available for G, but would love them to work on their booking and confirmation systems to make it a truly fabulous overall experience.
Our last afternoon tea in London was over 16 years ago when I qualified as an accountant and treated the family to tea at the Ritz, all whilst pregnant with G. It was an amazing occasion and I really wanted to find somewhere to meet our expectations and previous experience if at all possible.
without pushing M’s boundaries too far. I asked for his meal to be MEWS-free and was impressed when they sent through to me a copy menu for what they thought they could make for both children. With a few tweaks here and there, we ended up with what looked to be an impressive selection of savoury and sweet treats, guaranteed to make this afternoon tea a truly special one for us all.
My one hesitation had been around the savoury items going to be served for G as she is not the most adventurous when it comes to food and although I had originally asked if she could have just plain GF/DF ham sandwiches, the final menu I had seen suggested that she would be given more than that. A little prompting ahead of time meant I’d agreed with her that she would try at least a mouthful of everything she was served, so you can imagine all our delight when a plate of safe ham sandwiches appeared for her as well as an allergy-friendly carrot puree and houmous tart, all of which she enjoyed with an enthusiasm just about matched by M as he enjoyed an incredible array of unexpectedly safe foods.
The pièce de résistance was, without question, the marvellous dessert selection that arrived for each of us. Cakes, scones, mousse and fruit kebabs made for a truly spectacular display and the selection provided for M was just as impressive as those for the rest of the table. The chocolate and raspberry celebration cake was wonderfully light, airy and delicious, though totally unnecessary given the amount of food we had to enjoy for the meal. My Mum, Mike and I were all delighted to be able to treat both children in such a way and one that we would never have thought was possible 4 or 5 years ago. My thanks go to Dominic Teague and his team at One Aldwych for giving us such a wonderful birthday meal – and for the boxes of leftovers we were able to take to enjoy at home later too!
If I’m perfectly honest, G’s 16th birthday cake is an idea that has been bubbling for a few years, ever since I first saw it shared on Facebook, but it’s taken me this long to pluck up the courage to actually give it a whirl and be organised enough to start the decorations more than 24 hours in advance of her birthday. I was very nervous about whether I’d be able to get it to work, but the end result was much better than I hoped and G was absolutely delighted with it. That was especially important given this was the girl who just a couple of weeks ago said that she didn’t really want to celebrate her birthday and wasn’t bothered about having a cake!
To start with, I found a brilliant new 
you can see 
Easy; my Mum’s milestone birthday – her 70th – and a family weekend spent celebrating in style at the fantastic 
With 7 of us visiting, we stayed in one of their Grassholm lodges, which slept us all more than comfortably and included a fantastic open plan downstairs space with a generous sitting room, dining area and kitchen. Those of us who could booked bikes for the weekend and G and M had a great time racing around from venue to venue for each of the activities, although some of the hills proved a little more challenging for the rest of us. Over the last year, both children have really enjoyed every opportunity to go on bike rides especially as M’s confidence in his bike-riding has grown, and we can often be found spending a couple of hours exploring the country lanes near our house as part of a family ride. It’s also possible to hire a golf buggy to drive around the site, but we spent much of our time either walking or on our bikes whenever possible.
Needless to say, the children and Mike selected their activities for the Saturday with relative ease and I spent my time trying to grab action shots as G climbed to the top of a 40+ foot tree, whilst M and Mike took on the challenge of the high ropes course. Add in the demonstration of their Canadian roots in the afternoon with some axe-throwing skills and great fun was had by all. We even managed to squeeze in a quick early evening swim before heading out for a celebratory dinner at the Farmhouse Grill. Sunday was a little quieter with a morning at the Blue Lagoon water park before a late lunch at the Knights Tarfan.
7 years to diagnosis 