When I first started to write this, the plan was to write about 10 positives that Down syndrome has bought to my life and 10 negatives. I wanted to be honest, show both sides of the story and not be quite so ‘everything is rosy’. But I really struggled to come up with 10 negative things, like really struggled. There are the obvious issues that make life harder, like medical issues associated with Ds, society’s perceptions and worries about what will happen to your child after you die. Those are real significant worries for any parent of a child with special needs and I don’t take them lightly. It’s always a worry to me about what would happen if suddenly I wasn’t here anymore, but that’s actually that’s for both my children, not just River.
When I was writing, I found that I had to force negative points into it. Even health issues couldn’t be used for us personally as River has none and we’ve only ever had positive experiences within society so far. And even if we do face some ignorant people in the future, I refuse to let them have a negative impact on my family.
So I decided to change tactics and list the amazing things Down syndrome has given to our family, making us better people and really happy. And then I chose to write about the negative things that people may assume would be part of our lives, but actually never surfaced.
Things that Down syndrome has brought to our lives and things it hasn’t
The first thing that Ds gave to me as a Mum was the ability to throw away the milestone targets. To not feel that pressure that is so evident in parenting today, that all our children should be the best, the fastest and the highest achieving. It’s a huge relief to not be a part of the competition and to be able to just enjoy the moments. And enjoy them we do!
What Ds hasn’t brought to my life is jealousy of other ‘typical’ children. I have friends who have children the same age as River and are miles ahead in development. In fact I have friends who have children younger than River and are miles ahead of him. That’s just reality and it will always be that way. I honestly don’t feel sad about it, because I know that River will lead a great life and achieve big things. I have no doubt about that. I would hate it if my friends felt like they couldn’t celebrate their children’s achievements with me, or felt like they couldn’t brag about milestones they have reached. I want to enjoy their journeys as much as I want them to enjoy ours. Our children are different and that’s ok, and it’s ok for me that I celebrate River’s milestones later on down the line. River is different, but he isn’t less.
The gift of Sight
Having a child with special needs has taught me to really see people, to never overlook somebody because they have a disability. I’ve never been a person who would purposely treat a person differently just because they’re different, and I’ve never really been uncomfortable around people unlike myself. But if I’m completely honest, before I had River, I’d never really thought about it. I’d never thought about, or fully understood the struggles that people less abled face every single day. I would never have intentionally been ignorant, but I guess I never really made the effort either. And also, I never really realized that every single person on this earth has something to offer, and the potential to teach something to others. Down syndrome gave me that knowledge and I will never overlook somebody because of physical or learning difficulties ever again.
What Ds didn’t do is make me see River as different to other ‘typical’ children; make me see him as anything other than a little boy finding his way in the world. I don’t see Down syndrome when I look at him. I don’t feel sad when he is with other children and I am faced with his differences and challenges, and I certainly don’t wish he could be more like them. All I see is River, my amazing little boy.
Having River has unleashed fierceness in me that I never knew existed, and a drive to do something good. I’ve got a real ambition to raise awareness about Down syndrome, and to do my part towards squashing outdated and untrue perceptions. I want Rivers life to show the world the beauty that being ‘different’ can bring to society.
What hasn’t happened is a need to hide away, feel embarrassed or on guard about people seeing my son. I’ve never once felt that I can’t go somewhere and I’ve never dreaded people noticing River’s Down syndrome. I welcome questions. I want those questions and view them as an opportunity to educate. I don’t act any different to how I did with his older brother, other than feeling a need to teach people and help them open their eyes and minds through my son. We will never hide away from the world; we want to face it head on.
An Amazing Sibling
Now don’t get me wrong, my first born son Skyler was an incredible child before River was born. I always say he was just born with a gentle soul and I don’t believe there could have been a better brother for River. But I also believe that River having Ds will enable Skyler to not just become a good adult, but a great one. He will be accepting of differences, less judgmental and see people for who they really are. He has known about his brother’s diagnosis from the beginning. He was 3 years old and in the room with us when the doctor confirmed it, it’s never been something we have hidden from him and are completely honest. Saying that, never once has he referred to River as his ‘brother with Ds’; he is always just River, just his little brother who he adores. For me personally, it was important that we were open with him from the beginning, and that he was never excluded. If we were keeping Down syndrome a secret then how could we expect him to not see it as a big deal? Children are not daft, and they pick up on things we don’t even know they are aware of. I’m very confident that our openness with our children is going to be of huge benefit to them.
Down syndrome has not made me feel sorry for Skyler, or made me feel like as a sibling of a child with special needs, he is missing out on a normal childhood. He is a really happy child and clearly adores the bones of his brother. We are a very close family, who laugh a lot, travel and have amazing experiences. Yes I worry about Skyler having responsibilities regarding River when he is an adult, but I know he is up to the challenge. I truly believe that he will benefit from having River as a brother just as much as River will benefit from having him.
The Ds Community
I am so grateful to the Down syndrome community. Gaining membership to an amazing group of parents was one of the best things that could have happened to me, and I’ve met some warrior mums along the way. Some of these parents are a total inspiration and I can only hope that I can offer a little something back along the way.
Living overseas, in a place with no Down syndrome knowledge let alone a support group, could have been an incredibly lonely and isolating experience. I have friends here and I love that River gets to hang out with ‘typical’ children and is totally accepted for who he is. He’s just River and I honestly don’t feel excluded in anyway at all, but life is different for us. I actually only know one other lady who has a daughter with Ds and she is 22, I don’t know anyone with young children. Finding online groups has been a godsend to me, and meeting some amazing people has made our journey even more wonderful. There’s always someone to offer advice and support, and even though we are all different and just like other parents we have many different opinions, you can always find someone on the same page as you. I advise any parent who has a child with Ds to get online, join support groups and follow all the beautiful pages dedicated to people with Ds. You’ll be amazed at how seeing other people’s stories and seeing them do great things in the world, will bring you a huge comfort and new confidence in your future.
What hasn’t happened is joining a group of parents who feel sorry for themselves. It may be expected that we all talk about depressing things, about how we aren’t accepted in society or about the struggles our children will face in the future. It’s not like that at all! Out of all the people I have met, not one has ever felt sorry about having a child with Down syndrome. Of course there are bad days and we like to have a little moan, but no more so than any other parent group. I would actually say it’s less common, as we’re way more interested in sharing our successes. Having a bad day and reaching out for support, is not the same as regretting your situation. I’ve never met a more positive group of parents, and I truly believe that having children with Down syndrome has taught these parents to love life a whole lot more.
A Family Unit
Me and my husband Reagan have always been pretty tight, and even when it was just me, him and our first born Skyler, we had a happy family life. However since having River, it just seems so much stronger. It’s like he’s shown us how to really appreciate each other and see the beauty in our time together. We now realize what things are actually important, and what things really don’t matter at all.
Reagan and Skyler were my rock when we received River’s diagnosis, they kept my feet firmly in place and helped me see the positives. They reminded me that he was still our River, and I will always be grateful to them for making the experience bearable, actually, for making it beautiful. Reagan accepted the news pretty much immediately, it didn’t worry him in the slightest and I fell in love with him a whole lot more after seeing his love for his son.
Well what didn’t happen is divorce! We didn’t find it such a struggle that it ripped us apart, and we certainly didn’t ever resent each other. IT’s important to talk to each other and share your fears, and be there to support each other long the way. If you can manage that then believe me that your child will teach you all the other lessons you need to learn. Your child will be the greatest teacher you will ever have or ever need. I guess it may be assumed that having a child with Ds would put immense pressure on a marriage, but actually research shows that the divorce rate in these marriages is less than others. Of course there are marriages that break up, but chances are that these would have broken up anyway, regardless of whether you had a child with special needs.
The Joy of Celebrating the Small Things
Having a child with Down syndrome has given us the gift of really enjoying every moment, and celebrating the smallest of things. River takes so much longer to reach his milestones, and works his little bum off to get there. He deserves for us to sit back and enjoy this, to congratulate him and celebrate every single little accomplishment. And that we do! Me, Reagan and Skyler have been known to run around doing happy dances, all for something that to others just may not seem like a big deal. But for us, everything River does is a big deal, every single little thing. And it doesn’t only go for River, it goes for Skyler to. It’s much more important to me that Skyler is happy in his life than anything else. If he goes to university and gets a high flying career the wonderful. But if he doesn’t, yet wakes up every day with a smile on his face and goes to bed happy, then that is more than enough for this Mama.
River has taught us to slow down and not be in such a rush, to relax and enjoy family time instead of finding other things that need to be done. He has taught us to enjoy each other and not sweat the small things. It may sound totally cliché, but life really is to short and River has taught us to fill it with fun and laughter.
Having a child with Down syndrome has never once made me look at other families and wish we were more like them. Not once. I never look at families with ‘typical’ children, and wish that we didn’t have a child with special needs. River has created a special bond within our family and I don’t feel like we’re missing out on anything at all. To be honest, I’m more likely to think that they should take a breath and try being more like us!
Out of all the wonderful things Down syndrome has brought to our lives, my firm favorite has to be River himself. Without Ds there would be no him, and we like him a hell of a lot! He is feisty, determined, funny, mischievous, loving and completely gorgeous. We wouldn’t change a single thing about him, not one single chromosome. He has a twinkle in his eye and a smile that can light up a room. I know without a doubt that my son will achieve great things; I know he is going to have a good life.
What Down syndrome didn’t bring to us was a burden. River never has and never will be that. The definition of a burden is as follows – ‘a duty or misfortune that causes hardship, anxiety, or grief; a nuisance’, and that could not be further away from what River is to us. It makes more sense for us to say that the people in society who see him as a lesser person or don’t see his value are our burden. The people that don’t view his life as worthy or important, or feel sorry for him and us, they are our burden. If you are a person that doesn’t value people with disabilities, or understand that everyone has their place within society regardless of ability, then you are a burden. If you think a person with Down syndrome is not a person in their own right, then you are a burden. If you think that everybody has to fit into this mold of what society deems is acceptable or ‘normal’, then you are a burden.
My son is happy and he is loved. At the end of the day, they’re the only things that really matter.