The 'Holland Moments' of Parenting a Child With a Rare Condition

If you are a parent of a child with a disability or a rare disease, you’ve probably heard the poem Welcome to Holland. By the 10th time someone read it or mentioned it to me, I probably rolled my eyes. I’ve never been much for the schmaltzy and possess a healthy level of cynicism. Plus Welcome to Holland is a bit dated as our views on disability have changed since it was written in 1987. Nevertheless, I’ve been thinking about Welcome to Holland a lot lately, because it examines an experience I have had many times since our boys were born.

In Welcome to Holland, the arrival of a child with a disability is equated with a trip you plan to take to Italy. You make all the travel plans, learn a few words of Italian, research where you want to visit, and get excited to see a new place. Then when you step off the plane, you find you have landed in Holland and going to Italy is not an option. You are not in the place you expected to be, and you can’t go back to where you came from.

Rare disease, cancer, dementia. Anyone who has received an unexpected diagnosis for themselves or for their child can vividly recall that defining moment when the world turned upside down. First, there is shock, then there is grief, and then every emotion under the sun on repeat. Often, when the diagnostic process is long and circuitous, you are treated to several Holland moments. We’ve definitely faced many of them in the long eight years it took to receive a genetic diagnosis for our boys.

The first one occurred when our oldest was 2-and-a-half years old, and I was pregnant with our youngest. Our doctors confirmed that he had a genetic muscle disease, and it was possible our unborn child also had it. Another came five years later when we received a genetic diagnosis through a research study we had enrolled in years before. The researchers had identified the mutated gene that caused their disease and were able to label their genetic disease.

The Holland moments didn’t stop with their diagnosis though. I distinctly remember when our pulmonologist (a well-seasoned doctor) called somewhat panicked with the results of our oldest son’s first sleep study. Turns out he hadn’t been breathing well while sleeping his entire life, and his CO2 levels were way too high at night. He was 8 years old by this time.

Holland moments come in other ways too. For me, it came when I realized I was not going to be able to raise my sons, attend to all of their needs, and excel in my music and teaching career. That moment wasn’t a moment though. It was a long, drawn-out process of realizing, learning and deciding.

And now, here we are. We have all arrived in Holland. Our school life, work life, social life, hobbies, and activities have all changed forever. Like many of you, I have experienced grief, anxiety, disillusionment, loneliness, and despair at times. However, I’ve been at this long enough now to know that it’s not all bad news. Holland moments offer opportunity and growth. New life can spring forth — a new friend, a new truth about yourself, a realization about your family, a new appreciation for your abundance.

I still struggle when I encounter a Holland moment, but I’m getting better at moving through the grief and looking for the next right step. I’m helped with the knowledge that no matter what happens, I can never go back to “normal” and I will never go to the place I thought I would go to. The best I can do is put on fresh eyes and put one foot in front of the other.

If you have never encountered a moment like this in your life, let me be the first to say, “Welcome to Holland.” I know it’s hard. It will not stop being hard. I promise, though, it will be a lot easier if you keep looking forward and open yourself up to new possibilities. Holland is a beautiful place too.