“Welcome to Holland” is a popular essay written by Sesame Street writer Emily Perl Kingsley. It has helped many new parents of special needs children through the years. She sets up a metaphor describing pregnancy as a planned trip to Italy. However, the parent who is about to give birth to a child with disabilities never makes it to Italy. The plane lands in Holland instead. When this happens, the parent experiences fear and outrage that this plane landed in a different country. All expectations are dashed. After a time, the parent discovers the tulips in Holland, even Rembrandts. There is the gradual acceptance of this different, but equally worthy and enriching journey.
This tale is told with an assuring tenderness. I can see why it may comfort many who experience the unexpected and understandable alarm of giving birth to a child with extraordinary challenges. However, I found this story unsatisfying, leaving out too many important truths. The hard ones.
When my plane took off it made an emergency landing. It came to a jarring halt. Yes, there was joy and relief at the end of this flight, with the birth of 2 beautiful twin baby boys. However, from then on this journey became a relentless roller coaster ride of seizures requiring emergency helicopter transport, confounding cognitive and social challenges that require enormous quantities of assistance and support, behavioral issues, degenerative eye disease, low muscle tone and more to come. Few wait in line for this roller coaster, so only a precious few hold your hand. We did not land in Holland. Far from it. We landed in a local loosestrife field surrounded by dense forest. Loosestrife. The perfect word for this dense purple summer flower. Strife on the loose. Chaos, despair, isolation and heartache laid out at our feet.
Today, our sons are 23 years old. After years of what I call PETSD – Post and Evolving Traumatic Stress Disorder – continual care and worries have not lessened, even as our sons bring much joy and goodness to those who know them. Theirs is a success story so far. They work and volunteer in our community but the struggle to find and maintain the good people needed to support their ability to succeed each day is constant. In addition, I have an older brother with autism. He lives in a group home and has a permanent limp resulting from the neglect of a former director of the agency which our own mother founded. My mother today is a sturdy minded, frail bodied 90 year old. Successes and horrors make up most lives, none of us immune. Disabilities intensify this and we cannot candy coat this fact. Fragility, vulnerability and the uncertainty of the future loom larger. This is not Holland. Not now. Not ever.
Loosestrife is aggressive and invasive. It takes over and it is also gorgeous. Aggressive, invasive AND gorgeous. I never would have chosen the life I lead. But that’s what I got. Make no mistake. Loosestrife is not a metaphor for disabilities or my children. It’s a metaphor for the whole package. But if we define all things aggressive and invasive as aberration, we will never see the gorgeous.
The needs of my children and other family members took over my life long ago in ways that I never dreamed. My husband and I have regularly examined our choices. We could have made other choices to make our lives easier. But we never could….at their expense…or ours. Every day I get up in the morning to meet the challenge of helping them live their best life and finding ways to live mine.
These days, there are lots of tulips and other flowers too around my house. I am lucky to live in the foothills of the White Mountains. Nature helps me take a breath. In winter, I button up against the cold, bracing air and step out.
Loving our sons. Living the unsung miracles of daily life. Finding humor, nurturing friendships, old and new. Each doubt, each struggle. All of these are my Rembrandts.
Who are we to assume we get to go anywhere, never mind exactly where we want?
Some do, and they are very, very lucky.
But there are many ways to live a rich life.
Mine is learning to live free in a loosestrife field.
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I laugh, cry, sing, dream and garden there every single day.
That’s faith.
Amy Brenner Mitz is an ordained cantor who has served congregations in Chicago, St. Louis, New York and New Hampshire. She has an older brother with autism. Presently she lives in northern New Hampshire with her husband and 23 year old twin sons, one with Fragile X Syndrome, the other with Koolen DeVries.
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