Please introduce yourself and your family and tell us a little bit about your grandchild who has Down’s syndrome?
I am Simone MacMillan happily married to my hubby. We have 7 kids the pleasure of being a merged family. Dylan my eldest has an amazing partner Sharon who are parents to our Noah who has Down’s syndrome. They have 2 other just as awesome children Ethan and Willow. Noah is their middle child and our 2nd grandson as we have 3 granddaughters and 2 grandsons. Sadly, we live almost poles apart a Dylan and his family live in the UK, and we live in New Zealand. Thankfully we have the internet that allows for us to communicate freely. It is hard because I wish I could be there for Sharon and Dylan when they need help but more importantly I wish I could just be there for cuddles. However, they will be coming to spend Christmas with us in 2018. I have already started my Christmas shopping for all of them.
When did you find out that Noah had Down’s syndrome and what did you feel when you heard the news?
When Sharon and Dylan told me I was like yeah, he has Down’s syndrome, so what? I must admit it, it sounds a bit weird, but I am a nurse and it’s a just medical condition. I was worried how they would cope with the stigma from other people. But I can proudly say my son chose an amazingly wonderful person as his life partner and she is just a trooper love that girl to bits, she is an amazing mommy and a beautiful wonderful daughter in law.
What does being a grandparent mean to you?
So very special, so lucky, so privileged.
Were there any resources/groups/website/contacts that you found particularly helpful?
Sharon’s mom put me into contact Down’s syndrome chat group where I have been able to hear that I am just another grandma who loves her grandchildren. I do have some fears when they come to visit that it will be very traumatic for Noah as Ethan is older and looking forward to coming out. Willow is still too young, and Noah has his routine. The Grandparents Facebook Group has been exceptionally life saving for my overactive brain I wouldn’t know where I would be, without them; the group has been extremely supportive, kind and caring. I may be a nurse, but having that connection with Down’s syndrome grandparents, has been so valuable. It is my go to place where we/I feel safe and it’s magnificent. I would like to thank admins for starting such a safe haven. The grandparents for being themselves and sharing their love and raw emotions, and for making me a part of our community. It’s wonderful to feel ok about loving our grandson, to be grandparents without judgement. To be just me.
What advice would you give new grandparents?
Just be you, it’s life giving us grandbabies to love. It builds a special bond being a Grandie, it doesn’t get better than this, at all.
Resources for Grandparents
Tea at Grandma’s – the third book in the Looking Up series published by the Cornwall Down’s Syndrome Group (CDSSG)
In collaboration with Helen Laverty & Positive Choices Network, CDSSG have created “Tea at Grandma’s” which focuses on the important role of the often unsung heroes that are the grandparents, who can have “double the worry” for their own child and for their grandchild when a diagnosis of Down’s syndrome is given.
It’s available to order for £3.99 (incl free UK mainland postage).
Down’s Syndrome: Grandparents Chat UK – Closed Facebook group
Launched just two months ago, this Facebook group is exclusively for grandparents of children/young people with Down’s syndrome to share experiences and offer peer support.
If you would like to join visit the group page and click the ‘Join group’ button at the top.
Down’s syndrome: A leaflet for friends & family
This leaflet has been written to give you basic information about Down’s syndrome, to provide some tips about supporting the new parents and to highlight further sources of information.
Click here to download the leaflet or give us a call on 0333 1212 300 to request a copy.
Celebrating Our Lives, Our Stories and our YouTube channel
Our Celebrating Our Lives document profiles nineteen very different young adults with Down’s syndrome and gives you a window into what their lives are like. You’ll find a pdf version on our website here.
The Our Stories section of our website includes stories from people with Down’s syndrome of all ages and you’ll find a whole range of inspiring films on our YouTube channel.
#InclusionMatters
Lastly, here’s a little treat, courtesy of Daily Dose of Bella on Facebook . Bella recently had a starring role in a McCain’s advert with her Grandma and younger brother: