Down Syndrome Isn’t What Makes Life Hard

Life is full of ups and downs and when I learnt that I was going to have a child with Down syndrome, I almost expected all of those downs to begin to outnumber the ups. I expected life was going to get harder. You know what, life is still hard, but it always has been and it’s not because Hope has Down syndrome. It’s just always been that way. Life has always been difficult. In high school, I used to say to people “Life is hard… deal with it!”. Admittedly, I didn’t have a lot of friends and I often felt lost and alone so perhaps life was harder than it should have been but, I’m not sure I’ve ever come across anyone who has had a trouble free life. I’m not saying life is terrible and full of difficulty. Amongst the difficult moments are plenty of fun and enjoyable, easy moments. Those easy moments actually outnumber the difficult and we don’t have less because Hope has Down syndrome. So what have I learnt? I learnt that Down syndrome doesn’t make life hard. The difficulties we experience in life will be there no matter what, no matter who our children are. But we can choose what we focus on. We can choose to focus on the difficulties and fail to see the good moments or we can accept the hard and know that with all of that comes a hundred more good moments.

Love Can Be Shown In Many Ways

You Should Always Celebrate Small Victories

Victories come in all shapes and sizes. Often we don’t see them because we’re not looking for them or we simply don’t celebrate them. What I’ve learnt is that it’s important to have big goals, but it’s also just as important to have smaller goals that lead to those bigger ones. Not only should we have them, we should celebrate them. Even the smallest acheivements are victories. They are a step in the right direction to something bigger. When you don’t celebrate the small victories, you can feel like you’re not actually getting anywhere. With Hope this is so important because she goes at her own speed and things can take a lot longer to achieve. We have been working on talking and going to speech therapy since Hope was around one year old. (In true Heidi style, I actually cannot remember how old she was when we began). She is now 3 and still has very little she can actually say. Over the past 2 years though, we have celebrated many moments of success in Hope’s speech. When she first began babbling, we celebrated. When she first started saying ‘mamama’, we cheered. When she learnt many different signs and sounds for different animals, and would attempt each of them, we cheered some more. And just the other day in speech, she began putting two new sounds together ‘c’ and ‘ar’ to say ‘car’ and we celebrated once again. Many would say she’s still not talking, but we know she is taking steps to getting there and in her time, she will be successful.

Support Is All Around

I was in hospital when I was only 26 weeks pregnant with Hope and Alexander. Anyone who has had kids knows that at 26 weeks, you are far from prepared and facing the possibility of having twins early, while feeling completely unprepared is quite daunting. But the amount of support that comes in through these times is amazing, and that support has never stopped. While I was in hospital, Ben had people bringing him food and offering to watch Lincoln as much as needed. When the twins were born and in the NICU, we continued to have food delivered and people offering to help us with transport. When Hope went in for surgery we had a ton of both financial and emotional support. And the list goes on. Ben and I know that no matter what happens, we have support around us. People who are willing to help in any way they can to make things easier for us.

There is another type of support that we receive too. This is the support from you, the people who are following us and helping us work to increase acceptance of those like Hope. The people that encourage us to keep going every day. It’s this support that is unexpected, from many people who don’t know us. The fact that we know you are behind us and rallying for us is a huge support.

I Have A Voice

If you told me 5 years ago that one day I would have a child with Down syndrome, and that I’d be speaking up for her and sharing our families story, I probably would have laughed. I’ve always been quiet. Happy to sit in my space, and just follow along. Having Hope has helped me find my voice. Not only have I found it, but I’m using it. Speaking out has always been difficult but I’ve got someone to fight for and this is just the beginning. Finding my voice has actually helped me in many ways. It’s increased my confidence in me just being me and believing in myself. Who knows where that will lead.