Mother’s Day…A Time to Bear Witness

You know the look….the look that moms of disabled kids exchange when they walk past each other. The look that says, “I understand you.“

A close friend and single mother once said to me how important it was to have someone bear witness to her daily life caring for her severely disabled adult daughter. Some of you may feel the same. Perhaps there is no one in your circle of relatives, friends and colleagues who truly understands the discipline and sacrifice required, day in day out, to ensure the physical and emotional well-being of your child.

So tomorrow, on Mother’s Day, let us bear witness for each other. Let us acknowledge the raw emotions we first experienced as the seriousness of our child’s disorder became clear to us; let us bear witness to the grueling schedule of therapy/doctor visits, the sleepless nights, the thousands of diaper changes and feedings; the feelings of guilt as we come to grips with the fact that we can’t always give our other children the time and support they need and deserve.

I often find myself thinking of mothers with disabled children that live in underdeveloped countries. Imagine not having running water, diapers, sleep medications, a wheelchair. Today, let us collectively recognize these heroic mothers who battle against all odds.

Let us remember the mothers who have lost their children but whose hearts and souls still yearn to mother them. And let us also remember the children who no longer have their mothers to care for them.

Our lives are challenging, there is no sugar coating that fact. But there are also extraordinary rewards. Few parents on this earth experience the miraculous effects a single smile from our girls can elicit, or the joy that comes from a skill learned after years of practice.

My life was given new meaning the day I received Chelsea’s diagnosis. I promised her that day that I would never give up on her. A promise I suspect many of you can relate to.

On this particular Mother’s Day we have much to be hopeful for, so much wonderful research, so many smart, passionate scientists working on our disease.   But today we put all that aside to simply enjoy our children, healthy or otherwise, with us or with us only in our memories.

Today I bear witness to your daily struggle and I celebrate you and your child. Happy Mother’s Day from me to you!