Dylan 💔
It is every parents worst nightmare to even think they might outlive their own child and even though we were told on numerous occasions over the 11 years, 7 months, 1 week and 2 days we simply never believed it would happen to us.
This Sunday will be my 1st mummys day without him. My birthday was hard. Christmas was harder. But mummys day is killing me.
I remember last year on mummy’s day, when cutting myself in half between GOSH and home for my 2 babies, considering taking a break from the hospital to be with my beautiful daughter and my own mummy. Deep down I knew. It could. And was. The last. I will be forever grateful I followed my gut and spent my last mummys day on pokey Robin ward with my darling little boy blue.
We spent 2022 mummy’s day in GOSH reception area with both my babies and the nana’s too. The most precious memory I have of mummys day. Albeit the saddest. For he was so poorly. Dylan smiled through it. Which I would like to think was just for me!
I always used the word ‘life-limiting’ not lightly but maybe never truly understanding its true actual meaning and reality
I used it in the media whilst raising awareness for his (then) unknown diagnosis,
I used it when fundraising to help make his quality of life more comfortable
It even gave him VIP access to all the wonderful doctors and nurses at Princess Alexandra hospital who would roll out the red carpet when he came to visit (frequently)
But never ever did I actually realise it would become real and what that would mean.
Four became three.
Together became apart.
Happy became sad.
Laughter turned to tears.
Life became not worth living. If living is without him. (In the words of Barry Manilow and of course Spurs, We can’t smile with out you).
11 months on, on this sad and lonely path that you call life and I call existence, I talk about him 10,00000 times a day, I kiss his photo 20,0000 times a day, I think about him every mini-second, I cry silently all of the time (but mostly loudly in my own company) and I miss every inch of him with every breath in my body and beat of my heart.
For Dylan was the happiest funniest sweetest child to grace this earth. He was dealt the most rotten cards, given over 40 diagnoses and more daily medications that one hospital gives in a week. So everyday with him, even with how poorly he was and with all the milestones he was unable to reach, was a complete delight and total pleasure and it was my absolute honour and privilege to be his mummy. He would make me laugh out loud with his beautiful nature and his quirky little ways (boy tights were a must, Mickey Mouse and Peppa pig on loop, potato waffles birds eye of course and Ann Hegarty’s No.1 fan)!
He made Dylan’s Story an adventure. Mummy & Dylan ‘s Adventure always had a tale at the end of the day. (Generally medically related, sometimes ambulance related (like the time the driver got lost between Princess Alexandra Hospital & Great Ormond St, a blow out on the M11 on THE hottest day of the year and then Dylan making the nurses, driver and paramedics open the back doors and line to sing and dance to Heads, Shoulders, Knees & Toes). It was the best most heart wrenching adventure, and I wouldn’t have wanted to do it with anyone else but you.💙
Dylan was eventually diagnosed with HLH a very rare condition affecting his brain meaning that eventually the rest of his body got very tired and couldn’t keep going anymore. The blessing we had of not knowing this diagnosis until the bitter end is that we had our perfect little boy blue 💙 for as long as we did. If a baby receives an early diagnosis of HLH the prognosis is approximately 1 month and the doctors probably would not activate a treatment plan, had we known Dylan had HLH they probably would never have given him a chance. Clever Dylan hid it from everyone, the best doctors in the world and even me and we had the best 11 years with him. On receiving the diagnosis the doctors were amazed that with such a brutal disease how he breathed a single day on this earth. I would like to think it was our love care and devotion that made him want to stay on this adventure for as long as he possible could.
His life was limited but so was mine. I gave up literally everything to spend 24/7 with my amazing little boy and I’d do it all again in a heartbeat. Our hearts have been shattered into millions of pieces, shaken up, knocked down and reversed over just to make sure they’ll never ever heal. Which I assure you will never happen. My whole heart was filled with Dylan from the day we found out we were pregnant and were told ‘something just wasn’t right’ and until the day he’s back in my arms, this will never change.
Having to exist on the earth without him is hard, it’s a chore and devastatingly painful. Of course we have to be here for our beautiful Scarlett and we REALLY need her too. If 11 months is too long without him, how am I going to cope with the next 30-40 years??
This weekend is mumma’s day. Dylan didn’t understand any day (apart from Christmas) but having to do it without him is terrifying. He showered me with kisses and cuddles every day but people say the ‘firsts’ are the hardest but I know the 2nd, 3rd, 4th 5th and so on, I will feel just as devastated as I do today without him.
For all the mummies without their beautiful babies I salute you.
*We will be saying our final goodnights to our brave, courageous, gorgeous little boy blue 💙on Sunday 30th April 2023 at Waltham Abbey Cemetery, Honey Lane, EN9 3QZ at 1pm. We will have a small gathering afterwards at Abridge Village hall, Ongar Rd, RM4 1UH. Everyone is welcome
💙 It will always be Dylan’s story 💙
dylansstory 
I will be thinking about you on Sunday and will be giving you an invisible hug. Draw strength from everywhere and anybody you can and please know that there will be many people, as well as your family and friends, thinking about you. Richard and your beautiful daughter….. Linda
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