Being blessed with a Special Needs child is not on the top of everyone’s wish list, but when life gives you no options it’s sink or swim. I am paddling for my life right now and in return I see my little boys smiley face and it makes me paddle harder.
Today I met a mum who touched my heart
For the first time since the words ‘life’ and ‘limiting’ entered our vocabulary we mixed in a social group of others on a similar journey to us.
For today was the children’s Christmas party at Haven House. Rich had to work so I took the children alone. Dylan had a ball, he loved the panto – ‘Naughty and Nice list’ and I loved that he sat on my lap for the duration and I used his hands to wave, clap and join in with all the actions.
Being a Special Needs mummy takes guts. You need to be fearless. It can be a quite lonely place. You need to be a medical journal, a nurse, P.A, voice and mind plus all the usual jobs of a mummy and more.
When you decide and if you are lucky enough to have children, an unconditional love like no other, warms your heart and takes over your heart too. But to become a legal guardian of somebody else’s Special Needs child take a strong and courageous woman and that’s who I met today. A lady I instantly felt a bond with, we only chatted for a short time whilst in the queue to see Father Christmas but the love she had for her foster daughter filled my heart with joy and pride. For this lady had the choice to take all of the above along with her regular mummy duties bringing up her own two children and appeared to do it with such strength and grace. She has the most beautiful little girl whom I hope to see again at Haven House one day.
As 2015 is drawing to a close, a year which started off with an incredibly poorly Dylan, a fairly good middle and one which is ending with another prolonged chest infection. Here’s my list which sums up yet another challenging year.
1. You feel like you are living in a surreptitious world; you will witness ignorance and incomprehension, you will witness miracles that no others see as a miracle, and you will treasure every single moment.
2. You are dealing with a real life situation far beyond any expectations, and you just deal with it.
3. If you’re lucky, you will have met parents that walk the same path as you. You will march alongside together, although your roads take different turns and have different bumps along the way, you can take comfort in the similarities.
4. This year I have learnt to admit how hard it is, I don’t have to be a cheerleader, upbeat and positive all the time. It does hurt. It is tough and sometimes I feel deflated. But OMG it can be so rewarding when he does the smallest of things and that’s the best pick me up any mummy can get.
5. You are allowed and can say ‘No‘ to doctors and it’s ok to know more than them!
6. It’s ok to let your child set the pace
7. Don’t let anyone tell you you’re not allowed to grieve for your son’s childhood he is not able to live. ‘Sliding doors’ is my interpretation for it. Try not to think too deeply, just enjoy the journey your child is on. After all he writes the chapters in his own story, and he only sends Special children to those he knows will cope best
8. It’s a lot harder than I might make it look being a special needs mummy, 24 hours a day 7 days a week, week in and week out. I might put on a smile and some lippy but it’s right there from the minute I open my eyes to the minute I close them and not forgetting the time in-between.
9. Pencil it in has never been a truer saying. For no plans can ever be a permanent fixture as chances are that I will need to rearrange. To all my lovely friends whom I have cancelled on numerous occasions this year I appreciate your understanding and constant support.
10. Being a special needs mummy can be a very lonely job. Sitting awake during the long cold nights with your son, waiting in hospital waiting rooms, endless meetings for one thing or another, of late ECHP. For us living with the unknown itself is lonely. But when you are lucky enough to have the most wonderful true friends who are always there, bend over backwards to help and just put a smile on your face you know you’re not alone. Old friends and new, ladies you know who you are and I couldn’t get through each day without you.
My amazing family, parents, in-laws, siblings. My wonderful, intelligent, caring and beautiful daughter Scarlett and lastly my rock my husband Richard. Thank you I love you all.
Last but by no means least, the reason I get up each morning, the reason I am the person I am today, my inspiration, my love, my life. Dylan xxxxx
Wishing you all a fabulous Christmas, a Happy New Year and to a hopeful, successful and healthy 2016. It’s Dylan’s story and he writes the chapters.
Love Dylan’s Mummy 😘