To me it is so important to talk to people living with someone with Down syndrome when it comes to discussing DS. I love reading the blog, I am River.
The blog follows a little boy called River and his family as they have fun and laugher on their journey with Down Syndrome. I asked River’s mum, Hayley some questions all about her life with River! Here they are:
1. What makes you most proud about River?
There are so many! Honestly River fills me with pride every single day, he really is incredible. I would say that the thing I am most proud of is his sheer determination. As parents with down syndrome we are often told about all the things they won’t be able to do or achieve, and it’s often just assumed that they are just not capable. River has been feisty, strong and utterly determined since the day he was born, and along with all the other people born with Down syndrome that are achieving great things I just know he will break down barriers. He has already achieved so much in his short life and with a character like his, he will accept “you can’t do it.”
2. What do you wish you knew years ago about Down Syndrome?
I’m ashamed to say that before I had River I didn’t know anything about Down Syndrome. I would never have purposely disrespected a person or their families, but if I’d have thought about it I wouldn’t have a positive vision of what Down Syndrome means. I was completely in the dark and that’s why I don’t believe getting angry with societies ignorance is helpful, we were all uneducated once. I wish I’d known then that people with Ds can have fulfilling and worthy lives, that they can get an education, have active social lives and friends, get married, have jobs, have interests and ambitions, travel and have various levels of independence. I wish I’d known then that it really isn’t so different at all.
3. If you could tell your younger self one thing what would it be?
I wish I could tell my younger self not to worry about the future, because you will figure it all out and be happy. I was a completely different person growing up, and at one point I went through a period of partying way too much and not taking a whole lot of anything seriously. Even when I was doing it I always thought that I didn’t have a successful future ahead of me, I wasn’t doing anything to make that possible. But I would tell myself it’s fine, go ahead and enjoy it because you’re moulding the person you are going to become. I’d tell myself that I wouldn’t always be so useless and just might make a positive difference to others. I travelled, grew up and everything just fell into place. I now have a successful art business, a great husband and even greater children. I feel like I have a purpose and I wouldn’t change a thing. I’d tell my younger self to go ahead and enjoy those younger years because the future is going to be amazing.
4. What do you think the world will be like in 10 years time in terms of Down Syndrome?
I think the world is becoming more accepting, I must believe that the world is becoming more accepting. I really do though, and it may seem like a funny thing to believe when there is so much hate around, but I also see the good people fighting for change. There Is such a stigma around Down syndrome, but we need to remember that it wasn’t so long ago that our babies were in institutes and hidden away from the world. We really have come so far. And yes, the abortion rates and advances in prenatal testing are scary, but it is bringing out some warriors who are fighting for people with Down syndrome and are doing an incredible job. We have a long way to go as society is so scared of anyone or anything that is ‘different’ and that needs to change, but with so many people with Down syndrome making amazing achievements and so many advocates fighting for their acceptance, I do really believe the future is positive. Social media has played a huge part in this to, people with Down syndrome will no longer be hidden away and forgotten about, they are able to show the whole world their abilities and worth.
5. What inspires you most to blog?
I first started writing following River’s diagnosis as a kind of therapy, as it helped massively to just get things down on paper. I found a passion in writing and found I was good at it! I started a Facebook page not long after, and after it’s success I started our blog a year later. It’s been brilliant, right up there with the best things I have ever done and after only a year I made the finals of a huge blogging award. What started as self-care for myself and my family, has turned into what I hope is a useful and honest resource for parents. My son inspires me every day to carry on writing along with other who have that extra chromosome. I want to show the world what they are capable off and that Down syndrome really isn’t such a big deal. I write and share our lives because I want to give people with Down syndrome a voice in a world that sees them as less, I want to support parents without judgement and offer information to those that need or want it. It’s easy to write when you get to witness inspiring people every single day!
6. What is one piece of advice you would give someone new to the Down Syndrome community?
The best advice I could possibly give to new parents is to allow yourself to feel whatever you need to feel, without guilt. Allow yourself to feel sadness over your baby not living the life you had imagined for them, and allow yourself to be angry for what you feel you have lost. Everybody reacts differently and that’s ok, it’s all an emotional process and you need to go through it in order to come out the other side. You will come out the other side, and one day you will realize that you really didn’t lose anything at all. Your life did not become worse, it just became different and I think different is pretty fantastic. Your child is going to show you a love you never knew possible and a pride that will make you burst. A fierceness will be released in you that you never knew existed and you will soon realize that you are one of the lucky ones. Your life is going to be beautiful!
Thank you to the amazing I am River for being part in my Q & A series! Go check out their blog! It is brilliant!