​​ A Down Syndrome Parent Reflects on the poem, “Welcome to Holland”

I didn’t expect to hear from my obstetrician so soon after my routine 15-week prenatal blood tests. She told me my labs showed a 99% chance that the baby I was carrying had Down Syndrome.  I wasn’t surprised. Weeks earlier,  they did an ultrasound, looking for nuchal translucency, and while my baby’s was within the normal range, I noticed that she didn’t have much of a distinguishable nose. After being pregnant before, I knew something was “wrong”.   

 I shut my office door and sobbed.  I Googled.  

 

I cried a little more and then pulled  myself back together.  

I reached out to a friend who adopted two little girls with Down Syndrome so she could tell me everything was going to be okay.  She said “Congratulations” and told me to be prepared for more love and joy than I could ever imagine.  

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I went home and told my husband.  Watching him cry was the hardest part of my day.  We processed this new knowledge and grief differently.  My husband needed to talk to everyone he ever knew that had any personal experience at all with Down Syndrome, and I did not want to talk about it with anyone.  I accepted the diagnosis immediately, but it was hard to face the paralysing fear I felt.  

Well-meaning friends sent me the poem “ Welcome to Holland ”  over a dozen times.  It was written by a parent of a child with Down Syndrome and was intended to be comforting and encouraging. I was not comforted or encouraged by this poem. 

ESSAY: Welcome to Holland

“Welcome to Holland ” misses the mark and minimizes the complex emotions parents facing a diagnosis like this feel.  Parents can feel any number of emotions that are all perfectly natural and normal. I hope they are able to come to terms with many of these feelings before the child is born, like I was, but we all process emotions differently. “Welcome to Holland ” offers a limited perspective on what parents of children with Down Syndrome experience. 

It struck me that just as Holland is actually only two of twelve provinces in the Netherlands and that referring to the entire country as Holland is, well, uninformed and lazy, the poem itself presents one perspective on how parents can adjust and accept this sort of diagnosis.  

I understand why the author would do this. We live in a world that takes every available shortcut.  We minimize difficulty and smooth over discomfort.  I’ve come to find there is no escape from your feelings.  They are going to come out, most often when you’re already running late and your toddler is thrashing and fighting the ankle braces she has to wear due to low muscle tone. 

I’m privileged enough to have been to both Italy and the Netherlands and I love them both.  Parenting a child with Down Syndrome is not a European vacation. I understand the poem is about  expectations – but how insulting to Holland.   I wonder if the author has ever been to Holland because she says it’s slower and less flashy than Italy.  I guess she’s never strolled through the Red Light District or actually bothered to look at the country’s statistics past some post card with a windmill.  

The Netherlands has a higher GDP, lower unemployment rate, lower tax rate, more religious diversity, and better health outcomes than Italy.   By all standard measures of success, the Netherlands is actually a better place to  live –  it’s just never been as popular as an American tourist destination. 

And this, I think, gets to the root of my problem with “Welcome to Holland.”  The fact is that what is popular, normal, or more socially acceptable is not always better or easier.  I know some people take great comfort in that poem, but it irritates me. 

Just because my daughter has Down Syndrome, her life isn’t something to grieve. And just because I am a parent of a child with Down Syndrome, it doesn’t mean my parenting experience is going to be harder or more exhausting than anyone else’s parenting experience. Is any kid easy? Why do I get this consoling poem and every parent of a neurotypical kid does not? I have neurotypical children too and parenting them doesn’t feel like a trip to Italy either. Parenthood will throw some wild stuff at you.  

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With my older child, an “Italy,” I was cruising along with a perfectly healthy child, until I wasn’t.  She was 7 when she almost died from DKA (which we assumed was the flu) and was then diagnosed with Type 1 diabetes.  My son, who is now 10 years old was a seemingly “normal” but energetic 2nd grader when he decided to jump on desks and tear paper to make it “snow” in his classroom.  This required the class to be evacuated and security to escort him to the principal’s office where he proceeded to climb her bookcases and pull pictures out of her frames.  As it turns out, his ADHD medication needed to be tweaked.  My 8 year old has some not so pent up rage.  And the baby, my “Holland,” diagnosed with Down Syndrome, is the easiest kid we’ve got.  

The worry I had the day I found out about her diagnosis is still there.  I worried my entire pregnancy because I had too much amniotic fluid and they predicted she would need emergency surgery when she was born to repair her esophagus. Doctors said she would spend months in the NICU.  I worried for months when they scheduled her induction at 37 weeks because babies with Down Syndrome have increased odds of cord injury and stillbirth.  I worried the night she was born as I watched her in the NICU from my bed on an iPad.  

The first time I went down to the NICU and she held my finger with her tiny hand I worried that people would be mean to her when she’s older.  I worry about her delayed speech development and yearn to hear her say “mama.”  I worry that we don’t do enough hand-held walking or structured play at home because I have other kids to shuttle around and feed.  

I worry about making sure her special needs trust is set up correctly and that she gets all the benefits and services she’ll need to live a long, healthy life (because our country’s healthcare system is a mess and the waitlist for some of this stuff is decades – it’s truly sad that you have to jump on this stuff NOW).  I haven’t even scratched the surface of my worries, but I worry about all of my children, and I’m sure you worry about yours too. 

We really need to normalize the messy in parenting, and not in some fake “oh look at the mess my kids made crafting in my perfect house” kind of way.  And, from my perspective, we need to quit welcoming special needs parents to Holland in an effort to soften the blow of a complicated medical diagnosis because the only tulips you’ll be getting are flowers made from egg-cartons, and the Rembrandts will be handprint art you stick on the fridge. Parents who are receiving a new diagnosis need compassion, they need time to process, they need their friends and family to just be there. 

And then maybe next we can tackle how some websites and search engines portray these babies….

because this is what I got instead.  I am one of the lucky few that GETS to raise this precious, ray of sunshine.