I often say that living with Rett syndrome is like traveling in Oz with the Scarecrow, Tin Man and Lion. So, what would Mother’s Day look like there? I think it would happen in the Poppy Field.
Such a beautiful flower, not so unlike the bouquets many of us will get this year. But, it’s a day that makes many of us weary. As we trudge through that day, we just want to sleep. This journey is so hard. And, it’s not just the journey; it’s also the day that makes us weary. We spend part of it cherishing the children we have and we spend part of it mourning the children we’ve lost, whether it is the child we remember before Rett syndrome struck, or the child that was taken altogether, and for some the children that were not taken by Rett syndrome, but who were loved and lost all the same.
So, there we are. Amongst beautiful flowers and our daily travelers. The Scarecrow-our child who trips and falls and is so smart, but whom many people think doesn’t have a brain with an intelligent thought. The Tinman- so stiff and needing oil (therapy) all the time. And the Lion-that’s us moms. So many of us wondering how can we go on???? Convinced that we lack the courage and strength to make it to the journey’s end. And, like the Poppy Field, Mother’s Day can do us in. It can be just too much. And that is where we want to lie down and sleep. To forget. To dream. To stop-like the Lion and Dorothy.
And who is it, then, that comes to the rescue? The Scarecrow and the Tinman. The two that have needed so much help along this arduous path, they are the ones that come to the rescue. And so, our children, all of them, come to our rescue. They lift us up, they carry us through the day and we realize that their courage is great, their strength is wondrous; not just our children with Rett syndrome but the sometimes forgotten siblings who walk along, often on the sidelines, guiding us and putting us back on the path to the Emerald City when we veer off the path.
And those sweet ones who’ve left us- I cannot fathom how their mothers make it through this day, but they do- I can only say, I believe no love is wasted, however short it was with both on Earth, Love lasts for ever. The small, wee hand that wrapped around a finger must ever be wrapped around a mother’s heart. The heartbeat that was heard only within the womb is still an echo for ever and must reverberate within each mother’s soul.
I know that Mother’s Day can be bittersweet. But, in the end, while we may dwell a moment on the bitter, sweet will win the day. For the real bouquet that matters is the hearts that have loved beyond all measure, the color of poppies, but spread in a field of Life. And we will be carried through that field by the memories of all those who made us mothers.