DAILY LIVING & MOBILITY

On The Inside With Leo- our Son with an Extra Chromosome

Down Syndrome

Madison Huntsman

What I Wish I Had Known About Down Syndrome

I do not feel like an expert in anything! By anything, I mean nothing. I am a photographer and and then I started this motherhood adventure. Just as I was beginning to feel like my head was above water and approaching the life boat, a tsunami came out of nowhere and my son Leo was diagnosed with Down syndrome. So, I am blissfully drowning again—trying to navigate the new waters of motherhood with an added and very unexpected twist. If you are not a parent or relative of a sweet soul possessing an extra chromosome bundled with extra needs, chances are your first reaction to this is pity. Sincere and well meaning pity is not in any way offensive. I know that pity—even well intentioned and heartfelt pity— angers a lot of people, but I understand it. Additionally, I appreciate the sentiment. The difficulty with pity is that it does not grow with with us and our adjustment to our challenges. It is much more static and much less resilient than we are. Swimming with the Tsunami forces all of us to move on. Pity is an assessment of the past. I would like to talk about the future and suggest there are some things I wish I knew beforehand as I push foward.

The Down Syndrome Club

Kids born with Down syndrome often have more health issues. So if there, is in fact something to feel sorry about, it is the very real heartache parents and family endure when facing multiple surgeries and hospital visits.

Welcoming someone into your family born with Down syndrome comes with a lifelong membership to a very exclusive club. You become part of a community of parents, aunts, uncles, grandparents who all love someone who is chromosomally enhanced. They welcome you with open arms, share in your triumphs and feel for your sorrows and losses. They also have moved beyond pity into the future.

Please be patient with everything and everyone. I think of people in my everyday life who do not move efficiently enough or do not do things how I want them done and worry that I have not been patient enough. Now, I realize that my son may not be be efficient or quick and I desperately desire patience on his behalf. I want it so badly that I literally pray for patience and understanding on the part of others that are part of his life. I have also become more sensitive to the challenges of others. You never know what someone is dealing with or the struggles they have. Be patient, be understanding, be kind.

Lastly, children born with Down syndrome are loved just as much as any other children. They bring you just as much happiness, frustration, confusion, joy and any other emotions that come with any bundle of joy we decide to bring into the world. Life is filled with ups and downs, if this is my "down", I am truly lucky.

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