By Lani Knutson
Lani is mum to two wonderful sons have a rare form of Congenital Muscular Dystrophy (CMD) called SEPN1/SELENON related myopathy. She offers a glimpse into their family life as they raise their energetic boys.
If you are a parent of a child with special needs, 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 the poem is a bit dated as our views on disability have changed since the poem was written in 1987. Nevertheless, I’ve been thinking about this poem a lot lately, because it examines an experience I have had many times since our boys were born.
In the poem, 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 a shocking 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 8 years it took to receive a genetic diagnosis for our boys.
The first one occurred when our oldest was 2 1/2 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 5 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 realised that 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 realising, 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 been disrupted. Like you, I have been feeling grief, anxiety, disillusionment, loneliness, and despair. 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 realisation 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.
