8 Things Down Syndrome Has Brought to Our Family
Down syndrome has brought amazing things to our family, making us better people and really happy.
These are eight things Down syndrome has brought into our family, and things it hasn’t.
1. The ability to throw away the milestone chart.
The first thing Down syndrome gave to me as a Mum was the ability to throw away the milestone targets. To not feel the pressure that seems so prevalent in today’s parenting: that all children should be the fastest and highest achieving. It’s a huge relief to not be a part of the competition and to be able to enjoy the moments. And enjoy them we do!
What Down syndrome 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 most likely always be that way. I honestly don’t feel sad about it because I know River will lead a great life and achieve his own big things. I have no doubt about that. I wouldn’t want my friends to feel they couldn’t celebrate their children’s achievements with me, or felt they couldn’t brag about milestones their kids have reached. I want to enjoy their journey as much as I want them to enjoy ours. Our children are different and that’s OK. And it’s OK for me to celebrate River’s milestones later on. River may be different, but he isn’t less.
2. The gift of seeing people for who they are.
Having a child with a disability 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 someone badly because they’re different, and I’ve never really been uncomfortable around people who are different. 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 people with disabilities face every day. I would never have intentionally been ignorant, but I guess I never really made an effort either. And also, I never really realized that every single person on this earth has something to offer and the potential to teach others. Down syndrome gave me that knowledge and I will never again overlook somebody because of physical or learning difficulties.
What Down syndrome didn’t do is make me see River as anything other than a little boy finding his way in the world. 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 a fierceness in me I never knew existed. I have a drive to do good. I’ve got a real ambition to raise awareness about Down syndrome, and to do my part towards squashing outdated and wrong perceptions. I want River’s life to show the world that being “different” can bring beauty 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 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.
4. An amazing sibling.
I believe my first born son, Skyler, was an incredible child before River was born. I often say he was born with a gentle soul and I don’t believe there could have been a better brother for River. But I also believe River having Down syndrome will influence who Skyler becomes. I see him becoming someone who will be accepting of differences, less judgmental and who sees people for who they really are.
Down syndrome has not made me feel sorry for Skyler, or made me feel like as a sibling of a child with a disability he is missing out on a “normal” childhood. He is a really happy child and clearly adores 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 believe he will be up to the challenge. I truly believe he will benefit from having River as a brother just as much as River will benefit from having him.
5. The online Down syndrome community.
I am so grateful for the online Down syndrome community. These amazing group of parents was one of the best things that could have happened to me. Some of these parents are an inspiration and I can only hope 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, but I have friends here and River gets to hang out with “typical” children where he is accepted for who he is. I honestly don’t feel excluded in any way, but life is different for us. I only know one other lady who has a daughter with Down syndrome 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 with different opinions, you can always find someone on the same page as you. I advise any parent who has a child with Down syndrome to get online, join support groups, and follow pages dedicated to people with Down syndrome. Seeing other people’s stories and seeing them do great things in the world brings me huge comfort and new confidence in our future.
What hasn’t happened is joining a group of parents who feel sorry for themselves. 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. 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 personally believe having children with Down syndrome has taught these parents to love life a whole lot more.
6. A family unit.
Me and my husband Reagan have always been pretty tight, and even before River was born 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 important, and what things 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 he was still our River, and I will always be grateful to them for making the experience bearable. Actually, for making it beautiful. Reagan seemed to have accepted the diagnosis quickly, it didn’t seem to worry him in the slightest and I fell in love with him a whole lot more after seeing his love for his son.
Some statistics show there is a higher incidence of divorce among parents of children with disabilities. However, we didn’t find it such a struggle that it ripped us apart, and we didn’t resent each other. We talked to each other and shared our fears. We supported each other along the way. As a matter of fact, statistics also show when it comes to Down syndrome, the divorce rate is lower than average. Of course some marriages break up; it’s part of life.
7. The joy of celebrating the small things.
Having a child with Down syndrome has given us the gift of enjoying every moment and celebrating the smallest of things. River takes longer to reach his milestones and works hard to get there. He deserves for us to sit back and enjoy this, to congratulate him and celebrate every single little accomplishment. And we do! Me, Reagan and Skyler have been known to run around doing happy dances, all for something that to others may not seem to be a big deal. But for us, everything River does is a big deal, every little thing. And it doesn’t only go for River, I want Skyler to be happy, too, no matter what he accomplishes in life. 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 too 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 a disability. 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 others should try being more like us.
Out of all the wonderful things Down syndrome has brought to our lives, nothing compares to River himself. Without Down syndrome there would be no him, and we like him 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 believe my son is going to have a good life.
My son is happy and he is loved. At the end of the day, these are the only things that matter to me.