Before I start, please understand I am writing this as if it is a ‘story’ and not like it’s my real-life – really happening to us, to me, to my little boy.
Maybe it’s shock, maybe it’s denial, maybe it’s because I don’t want to believe it, which ever way I look at it it hurts like hell.
I reckon, after almost 5 years in and out of hospitals mostly Great Ormond Street Hospital for Sick Children I’ve come to terms with the fact I have a ‘special’ child, special needs, disabled, sick. I have finally accepted it. No he is not a baby anymore, although to look at him you’d think he was, not obviously dismorpic, He is simply an almost 5 year old in a baby’s body, he resembles a 9-12 month old baby on the outside. He’s my baby and always will be. But on the inside almost every part of him is under a different consultant.
- Dental & M….,
Without even mentioning all the Therapists, Clinical Nurse Specialists, Local Pead’s, Community Pead’s & Community Nurses, Special Education Workers, and his lovely Family Support Workers at SNAP (Special Needs & Parents) and finally (I think?? Could be more!!) The care Team at Haven House Children’s Hospice.
Dylan certainly is a popular boy. Everyone wants a piece of him. No wonder my very retro! Filofax is too busy and I have to book Nana in for 3 weeks on Tuesday – ops!
Being Dylan’s EA. (Executive Assistant!), I was a PA. but he promoted me wahoo, it’s the only promotion I’ve had without being given a Pay increase, saying that it’s the only job I’ve had I’ve done out of love, not forgetting being Scarlett’s mummy too! She too needs a PA, taxi driver, cash machine, chef, personal shopper but that’s just part and parcel of being a mummy isn’t it? I much prefer being Dylan’s EA as opposed to his carer. Makes us both sound much more important lol!
Let me tell you if I don’t laugh about I will cry and simply not stop…….
So at the moment we are having a break from his media appearances so his appointments have stepped up. Back and forth almost everyday with one appointment or another.
But the one that’s changed all our lives is the frank and open conversation myself and Rich had with Dylan’s endocrinologist a couple of weeks back. There’s only a handful of people who can experience hurt like it & no one could have prepared us for ‘this’ conversation.
For those who dont know what an Endocrinologist is, and let me assure you I didn’t know what any of these doctors specialised in let alone pronounce or even spell the words. “An Endocrinologist is a doctor that specialises in Endocrinology. It is a specialty of medicine; some would say a sub-specialty of internal medicine, which deals with the diagnosis and treatment of diseases related to hormones. Endocrinology covers such human functions as the coordination of metabolism, respiration, reproduction, sensory perception, and movement.”
As you may know, Dylan doesn’t grow very much at all. It all started when I was 27 weeks pregnant with him. I was so happy I had just had an amazing sizing scan and seen his gorgeous little face only to be told “he’s not growing, he’s getting smaller, he’s probably got a genetic condition which you won’t find out until he is born, GOOD-BYE”……….
Dylan’s never grown much, nor put on weight since birth, but the Endocrinologist looks at his growth or non-growth in this case. Late last year, after careful consideration and long discussions, we put Dylan through many tests, under General Aneathetics, inserted new Hickman Lines, 12 hours solid of 20 minute blood tests only to be told that Growth Hormone replacement is simply not an option as the side effects could basically kill him, shorten his life immensely, reduce his quality of life…….. So me and Rich simply said “NO” in unison and that was that. The drug we were holding out most hope for since he was 12 months old just shut the door in our faces. Gutted. But relieved to know the side affects before starting any treatment.
In the last 6 months between appointments Dylan has grown an impressive millimetre. One and a half centimetres in the last 18 months. You get the picture…….
So when we are confronted with the consultant standing over us in a small consulting room with one hand on his hips and one leaning up on the wall telling us there is nothing he can do to ‘make Dylan grow’ and given us, in the most open and upfront conversation I’ve ever had, with the room literary closing in on us, not able to stop the tears from falling and finding it hard to catch a breath; Dylan’s life expectancy…………
He simply doesn’t think my little boy will be here forever.
- Crushed 💔
- Devastated 💔
- Heartbroken 💔
- Dumbfounded 💔
- Hurting 💔
- Denial 💔
- Overwhelmed 💔
- Feeling Hopeless 💔
- Refuse to believe 💔
- Horrific 💔
- Terribly sad 💔
As I write these words they mean nothing. I am emotionless. There are no words to describe how I feel.
As I look at my beautiful little boy today whilst sitting here writing this blog , making a mess with his toys, eating hoola hoops and watching Mickey Mouse Clubhouse as happy as can be and having a really good ‘well day’. Trying so so hard at everything he does. Wanting to walk. Wanting to talk. Voicing his own opinion non-verbally of course!. Having his own little amazing personality. Developing at his own speed. So gorgeous and loving and simply adorable.
I refuse to believe.
We know the reason Dylan is here today is from our pure determination and our love and devotion to him. This care and love has got him through the bad times and he’s got more fight in him than anyone I know. And he has got us through the bad times. Together we are a perfect little family. Mummy, Daddy, Big Sister & Dylan
Thank goodness the prognosis isn’t imminent and I pray that medicine improves and something can help Dylan prolong his life. As although his quality of life is limited he loves his little life and we love him.
Every little thing he does is magic!!
If any doctors out there read this and feel they’d like to help our ‘5 year old baby‘ please feel free to contact us. We would love to hear from you.
But for now.💙 Please huggle your little ones tightly. 💙 Live for today. 💙 Every moment is so so special. 💙
Dylan’s loving mummy xx