February 13, 2006
For the Heart of It

For those of you who may not have heard, February is Heart Month. The American Heart Association uses this month to try to raise public awareness regarding general heart health. This means sharing information about lifestyle habits that decrease the risk for heart attacks or strokes. It is a very important public health message. I hope everyone is paying attention and applying these ideas to their lives. I am going to resist my urge to talk about dark, leafy green vegetables and legumes—for now.

For me, February, or Heart Month, means something different. No, I am not inundated with Valentines. I am reminded of the birth of my second child who has taught me a great deal about love, happiness, courage, forgiveness, motivation, and the importance of a person's heart.

Before I go any further I am compelled to say that both of my children have influenced me equally, each in their own way. In February, though, my thoughts belong to Andy.

Andy is seventeen this month. He is one of those children people call, “complex” or “a challenge to the system.” His labels include Down syndrome, autism, he is nonverbal, and now he has celiac disease. Each of these came sneaking in, one at a time, I guess so I won’t get too comfortable.

His real qualities are bigger than those labels, but are often overlooked. I don’t know how people miss them. His eyes light up a room when he smiles. He is an amazing judge of character; he has never been wrong when he chooses not to like someone. I’ve learned to trust his judgment. He is a chick magnet. Enough said about that. He is empathetic, always offering me an “I’m sorry kiss” after an aggressive outburst or when others treat him badly and I come to "save the day." Somehow he thinks that’s his fault. He is compassionate. When life is overwhelming, in my work or with his teachers, he gives me space.When things are going well, we are rewarded by learning and an enjoyment of life that is incomparable to anything I’ve ever seen. His joy is contagious. I have never seen someone scowl when he does his happy dance around a room, even if they think we’re a bit odd. When he loves, he loves with abandon. He communicates well, but you must be a good listener to hear him. He exercises amazing power over all of us with his one word, “Yah.” We are mere puppets when he uses that word. When life is good, it’s really good. It’s fun to be around him. Andy taught me the meaning of doing something for the heart of it.

It is Andy who has taught me tenacity and courage. I can’t count the number of times I think I can’t do what is being asked of me. Not another sleepless night. Not another illness. Not another new “behavior” to decode. Not another phone call with an unknowing professional. Not again. Not now. Please.

Whenever I get to this place I am rewarded with a new, and more monstrous challenge than the last time. Somehow I find a way to do my best.

For the heart of it.

It’s never Andy who creates these scenarios, mind you. It’s not his intention anyway. Whenever a bad situation is resolved, my boy emerges from the dust. His heart begins to shine again from deep within, through his eyes as they bore into mine, “Thank goodness,” they say, though there are times I swear the message is, “It’s about time.”

I now live by the words of Eleanor Roosevelt:

"You gain strength, courage, and confidence by every experience in which you really stop to look fear in the face. You are able to say to yourself, “I have lived through this…I can take the next thing that comes along.

"You must do the thing you think you cannot do."

For the heart of it.

What keeps me going when the going gets rough? To be honest, it is Andy’s heart. When things are not right, the light in my boy’s heart fades. His eyes are empty. He is empty.

Each February since his birth, I have written him a birthday letter telling him the amazing things he's brought to my life. This month, for heart month, make a list of your children’s great qualities. Look for those things that are immeasurable by any IEP, IFSP, IPP, PCP, test, or plan. Write them a letter and share what you see. You don’t have to give it to them today. Put it away for the right moment.

For the heart of it.

The lessons I learn from Andy tell me that when those heart qualities are not evident, something is amiss. It could be anything. Yet the moment I realize I’m not seeing that happy dance or the sparkle in his eyes, or get a big hug at bed time, I know I must get to work.

For the heart of it.

Warmly,

Joan Guthrie Medlen, RD, LD, is the Project Director of Creating Solutions, Founding Editor of Disability Solutions, and the mother of two grown boys, one of whom has Down syndrome, autism, and celiac disease.

PS- Check my fundraising page and Volunteer Page for ways you can support the work of Creating Solutions.

©2006 Joan Guthrie Medlen
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The opinions shared in this Blog are not necessarily those of Creating Solutions or The San Francisco Foundation Community Initiative Funds.