Tag Archives: celebration

Another year over

To my darling daughter,

To my darling daughter on the eve of your 12th birthday:

This wasn’t quite what I had planned.

Today I was supposed to be baking up a storm in the kitchen, IMG_0063[1] making some special cupcakes to celebrate your 12th birthday tomorrow, cakes to make up for you having to celebrate your last birthday at GOSH with M and without a cake. The ingredients are bought and hiding at the back of the cupboard, so maybe I’ll have the chance to bake them for you for Christmas because instead I’m over 100 miles and 3 hours travel time away from you.

Today we were supposed to be enjoying time together as a family as well as with your beloved Godfather, Uncle A and his family; instead you and Daddy are at home with them all, whilst M and I while away our hours within the confines of GOSH on our own.

Tomorrow M and I had planned to serenade you awake with a rendition of “Happy Birthday” before watching you open your presents and cards and sharing the excitement of each new gift with you; 20151018_133210 instead we’ll be watching via FaceTime to see what goodies you’ve received with our fingers crossed that our cards have arrived from London in time.

Tomorrow was going to be a busy day: first to watch you both in our church Nativity, then head off for a special birthday riding lesson before a late lunch at Wagamama to celebrate your big day; instead you’ll be doing those things with Daddy, Uncle A and the rest of the gang, whilst M and I share a quiet day and hope to be able to get to the Carols by Candlelight service at the church around the corner from GOSH.

However, it doesn’t really matter what was planned or what’s going to happen. The most important thing is that even though we’re all these miles apart for your special day, M and I will be thinking of you and celebrating with you and loving you as always. I’m so sorry that we can’t be there with you this year, that we can’t spend your birthday in the way that we all wanted to, but I’m glad that Daddy, Gu and Uncle A are all there to help you enjoy it as much as possible. The last 10 days have been hard, especially knowing that we wouldn’t be home in time and I hope that next year will be very different. In the meantime, know that Mummy loves you very much; that, as I tell you so many times, you will always be my baby, no matter how old you get; and be warned that, when I see you next, I’ll be wrapping my arms tight around you and hugging you close for an awfully long time. B128

Happy 12th Birthday Floss xxx

A Numbers Game

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Tomorrow’s Tubiversary marks:

12 NG-tubes and the accompanying tube changes, which included…

…2 tubes pulled out by accident and 3 that broke unexpectedly;

4 pump backpacks worn out and replaced (and number 5 will be needed soon);

approximately 70 Feeding Friends stickers and 60 strips of Tegaderm used to keep that tube firmly stuck to the side of his face;

and at least 3 other tapes tried, tested and rejected;

1 Christmas, 1 Easter and several birthdays survived and celebrated;

Nearly 1 whole school year achieved with only a few days off;

1 week away in Cornwall enjoyed;

4 weekend trips planned, packed for and successfully negotiated;

5 safe foods and 2 safe oils identified and back in his diet, resulting in…

…around 15 new recipes adapted and perfected…

…4 new kitchen gadgets invested in and well-used…

…and impressively 16 restaurants found to be amazingly able and willing to accommodate the trickiest of dietary requirements

Not forgetting:

410 litres of E028 pumped

12 daily medicines reduced to just 3;

nearly 3kg of weight gained

5cms of height grown

And including:

12 months of stock counting, and rotating, and checking, and ordering

52 weeks of new syringes and dressings

365 days dealing with pumps beeping – …on…off…start…stop…blockages…settings…errors…”just becauses”!

8,760 hours of making sure the tube is tight enough, taped enough, in the right place enough…and not getting caught on anything

525,600 minutes of longing to be able to hold or stroke or kiss that precious little face without the tube getting in the way

Countless tears shed, hugs shared and frustrations vented

All amounting to…

One year of the best health ever

Fitting in a birthday celebration when we can…

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Today’s a special day. It hasn’t quite turned out as planned, but then again, things quite often don’t in our household. Presents have been bought and wrapped and cards have been written, but the birthday boy wasn’t at home this morning to open them. I thought we might enjoy a family meal together at home tonight, but Mike has been away on business, so we’ll be lucky if we just about manage a strategically ordered takeaway before 9pm instead. I was even hoping to bake a cake, but work commitments have left me running around a little like a headless chicken this week and unless things improve drastically before that 9pm takeaway deadline, I really don’t think that will happen.

Mike & his hero Dave Gorman - last year's birthday pressie. Wonder what this year will bring?

Mike & funny man, Dave Gorman – last year’s birthday pressie. Wonder what this year will bring?

So instead, let me take the “easy” way out and instead wish Mike an amazingly happy birthday! It might not have been the birthday celebrations we’d have chosen, but I hope your day is a good one and G, M and I can’t wait to see you tonight for a mini celebration before bedtime. We love you lots.

“Wherever you fly, you’ll be the best of the best!”

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This is it. After 7 years, and more schools than I care to think about, my beloved firstborn, the beautiful G, is finishing Year 6 and heading off into the next adventure of her school career. We’ve cheered at her last Sports Day, been entranced by the Year 6 production of The Lion King and enjoyed all aspects of the Year 6 camp. We survived the stresses and tears of SATs week (just) and this week celebrated an amazing set of results that we’re so very proud she achieved. Tomorrow is her Leavers service and I’ve no doubt emotions will be high, amongst the parents, even if not with the children themselves. It’s hard to believe that this little munchkin is old enough to go to “big school” in September, but she is and I can’t wait to see what the next steps on her journey will bring:

The quote in the title is from “Oh the places you’ll go!” by Dr Seuss.

7 years to diagnosis

Searching for an answer

Tag Archives: celebration

Another year over

To my darling daughter,

A Numbers Game

Fitting in a birthday celebration when we can…

“Wherever you fly, you’ll be the best of the best!”