Occasionally, and yet far too often, a member of our Down syndrome community gets sick…like really sick and the entire community rallies together to pray, speak words of encouragement and “send good vibes”. It’s happening right now, in fact. There is a little girl who we are desperately praying for and I am in awe, once again, of my DS family. Today, as I was praying for little Indy, I was reflecting on how my DS community is actually a reflection of what I think the church should be – a really good example of how our love for God and our love for each other is played out in community. You see, when you have a child with Down syndrome, you are given a VIP pass into an exclusive club that you never knew you wanted to be a part of: The Lucky Few.
Yup, we have name, a t-shirt and even a tattoo but the DS community is more than just paraphernalia and a secret handshake – it’s a reflection of what I believe God intended the church to be and here’s why:
We choose life
I have always believed there is something very special about parents of children with Down syndrome because we chose life. When faced with a choice to abort or not, to give our baby up for adoption or not, to adopt a neurotypical child or the one with an extra chromosome, we chose the latter. We chose life when often, we were encouraged not to. We knew that the life in front of us, on the screen, in our arms, or in the photograph, was given by God and was a life worth living and worth fighting for.
a life worth living and worth fighting for
We learn from each other
I am part of a number of groups, on Facebook and in person, made up of parents and caregivers of individuals with Down syndrome. They are safe places where I can feel free to ask my questions. No question is too small, too trivial or too dumb to ask and I can always count on others who have gone before, or who are going through the same thing, to offer encouragement and advice. It should be said, that those two things (encouragement and advice) always go hand in hand. No one judges me or mocks me but rather, there is often, first a word of encouragement followed by a suggestion. We recognise the fragility of each other, our common vulnerability, and the deep lasting love we have for our kids.
We mentor each other
One would think it would happen naturally in a community but I think the key is that we need to recognise that each person needs support and has something to learn. No man is an island and none of us know it all when it comes to Down syndrome. In fact, most of us know nothing about Down syndrome when we are granted our VIP pass and so there is a very intentional effort to reach out to new parents. I was so grateful for my friend Deanne. I will never forget the day she showed up at my door with toys her son was ready to pass on, but more than that, it was her way of saying,
I’m here when you need me
We pray for each other
Oh, how we pray for each other. It never ceases to amaze me. Sometimes it is about big things, like our sweet girl Indy, but sometimes, it’s about small things like sleep, or eating, or appointments…the endless appointments. Sometimes, it is about behaviour or sanity, stamina or navigating relationships amidst the special needs world.
We pray for each other – for the big things and the small things.
We advocate for each other
I am learning that it is one thing to be kind to a person, but it is quite another to advocate for them – to search out information, take them under your wing, or help them fight a battle. We rarely fight for just us. When I was taking on the province of Alberta and city of Edmonton, I wasn’t just fighting for my own daughter, Ella’s, right to an education. I was fighting for those parents who didn’t have the courage, words or strength to fight. We coach each other through IDP’s, IEP’s and EHCP’s. We give each other the questions to ask our doctors and specialists and we are each other’s biggest cheerleaders.
I am learning that it is one thing to be kind to a person, but it is quite another to advocate for them
We celebrate together and we grieve together
This point is my favourite and an aspect of Christian community that I feel we are not very good at as the people of God. Quite regularly, we have new members join our groups. I am part of a few larger DS groups and I love seeing the reaction when a new member posts an introduction. Often, they haven’t even given birth yet, or are only days into parenthood. They are often very unsure and many are still grieving the ideals they had surrounding their new baby but it never fails that within a couple of hours they are flooded with hundreds of comments saying, “Congratulations!!! I understand…”
In choosing life, there is also a grieving process that needs to take place. We need to grieve the ideas that we had for our child’s life and our own lives because the reality is, life will look different. We’ve all been through it. We understand and we know that the grieving of those ideals doesn’t end a year after birth, three years or even ten years down the road. We continue to revisit our grief from time to time through disappointment, heartache, unmet expectations and altered expectations. Our community is there to hold our hands, pray for us, and grieve with us.
We weep together, and yet in solitude. When one of us hurts, we all hurt. When one of our kids gains their wings, as we say, we all mourn. I think the hurt runs so deep because we can see our own kids faces in the face the individual who has passed away and we can see ourselves in the swollen, red, and tired faces of the parents.
When one of us hurts, we all hurt.
We do not take life for granted and because of this, we also celebrate together. It often takes our kids a lot longer to learn a new skill and so while learning how to put your hair into a ponytail isn’t a big deal to most 10-year-olds, for us, this was a HUGE victory!!! Being aware of just how unremarkable it is however, it’s not something I went telling just anyone about but I did share our victory with my DS family because they get it. We celebrate everything together from ponytails, to birthdays, from green light ECG’s to walking, talking, eating, sleeping, reading, the list goes on.
We celebrate life, our community, and belonging.