Recently I had the privilege of meeting Maria Shriver at a conference. I told Shriver that her book, Ten Things I Wish I’d Known Before I Went Out into the Real World, served as inspiration for my upcoming book and consulting business, Chasing Hope.
Why Chasing Hope? Because as any parent of a child living with a challenge knows too well, effort, energy, time and money spent seeking treatment can feel as though you are chasing hope.
My own unexpected journey began when my oldest child, Schuyler, was 18 months old. Since first-time parents learn as they go, I didn’t realize anything was off until the rages started.
In the span of four months we were asked to leave two preschool programs. It took more than two and a half years to get a diagnosis. For some reason, not one professional wanted to break the news to me. Instead of being straight with me, I would be referred to yet another practitioner.
Finally, two days before Christmas, our child psychiatrist delivered the answer we suspected was coming: our son had Aspergerís, ADHD and a pediatric mood disorder. While it was tough to hear, it was such a relief to know what we were dealing with.
That was eight years ago. In the past decade as a parent of a child with special needs, I have experienced microscopic victories, moments of despair, redefined success, found joy where I could, advocated for legislation, educated law enforcement, reached out to other parents and found blessings in the most unexpected places.
In my pre-mom life I had a career in government and politics, including working in Washington, D.C., in the Congressional Affairs Office of the Secretary of Labor. Public policy has always been my passion and working to create laws to enhance the quality of life for families throughout Illinois and the U.S. fuels my efforts every day.
The poem ìWelcome to Hollandî really resonates with me. Each time I find myself upset with something related to my sonís challenges, Iím reminded that while I might have planned for a trip elsewhere, Iím in Holland and I better just get my big girl pants on and charge ahead.
Ultimately I know that Iím not alone in this journey. By slowing down and meeting the need of the moment, Iím better able to be present for my son, my other children, my husband, friends and community all while still taking good care of myself.
Perhaps the biggest lessons I have learned is that living in denial is no way to live. Yes, there are days when I feel overwhelmed, discouraged and lose faith. Then I remember that Iím surrounded by a tremendous circle of love and support that sees me through the brutal times.
No longer do I wish that my son’s situation would change. Rather, I now ask that he is happy, has a friend and finds a way to use his unique talent for building models to support himself as he gets older.
Anything above and beyond that is gravy.
