When you first enter a Children’s hospital, scared out of your wits, most likely you will see a plaque or a friend will send you the link to read the poem, Welcome to Holland by Emily Perl Kingsley. You find solace, at first. Knowing that another parent understood how you are feeling at this moment. At this moment when your child is not the one you planned but the one you must make heartbreaking decisions. You prepared for one journey and ended up not even close to where you planned.
If you are “lucky” your child will get diagnosed with something known. If your child has Down Syndrome, Cerebral Palsy, Autism, Multiple Sclerosis, sadly even cancer the doctors know what treatments may work, they can tell you where you most likely will be in six months, a year or a lifetime. The doctor will tell you about a network of support, of other parents who know exactly what you are feeling in this moment and you will discover a village. You will have someone who blazed the trail before you even entered the footpath. You will have a resource that will tell you that this treatment worked or this battle has been fought and give you the tools to fight the battle for your own child.
You had not ended up where you planned, you might not like the village, but you have a lifeline if you choose to hold on.
When Bridget was a newborn and a kind nurse handed me the Holland poem, it was an epiphany. Yes, I thought, this is what I am feeling. This is not the baby I planned for…but I don’t know the language. Months later (heck, years) I railed against the doctors who did not have the answers either. Spending five years navigating life with a child who has an “unknown” genetic abnormality, a mom will become the Queen of Google. She will read blogs, find untested therapies and research until 2 am to find the answer, any answer.
The mom of the “unknown” had not ended up where she had planned, but she landed without a lifeline. She would give anything for a village, so she creates her own.
The parent of the “unknown” doesn’t stop looking for answers. They just become more strategic about the journey. They research gene testing, they refuse to listen when they are told their child doesn’t qualify. They rebel against the medical field when they are told we will have an answer someday but not now. Now matters. Now is important. Now they will fight to find out why their child is “special” and what they can do to make that child spectacular. The parent facing the unknown goes outside the system, demands that the doctor will not stop looking and finds the answer on their own.
The answer isn’t an answer. This parent lands in the land of the “rare” syndrome. One so rare she is told only two other children in the Netherlands exist. They are boys, nothing in common with her daughter other than a syndrome so rare it does not have a name. That mom thinks, for Cripes sake I know nothing about boys! Yet this newly diagnosed “rare” parent still perseveres. They do more research and finally discover that a village does exist.
The “rare” parent might not have landed where they planned, it might not be the all-inclusive resort they had hoped to spend some time in, but they are no longer alone. They just don’t have the lifeline they expected. Instead, as each new parent is initiated the rare parent becomes the tour guide.
The “rare” parent never gave up hope, though. They quickly discover that it is not just two boys, but 12 children. Twelve glorious children and in two short years that number triples. The power of parents is awesome, beyond the reach of science or faith or anyone who tells that the answer will be someday just be content with where your child is now. The “rare” parent becomes the lifeline, the beacon of hope to the new parent that is diagnosed. They still might not have a name for the syndrome, but they have a syndrome and a starting point.
Here is the truth, the new parent who left the hospital with the perfect child, the scared parent whose world was just upended, the “unknown” parent who is navigating life without a net and the “rare” parent who is redirecting her quest for an answer to a quest for advocacy are all the same parent.
We are all parents wanting to create a world where their child will be accepted, embraced, challenged and expected to be the best they can be.
No parent ends up where they planned on day one. We all plan for Italy and end up not knowing the language (just ask any parent of a teenager). The good news is, if you are lucky, you find your village and your voice. You not only learn the language but you teach it to the ones that enter the queue behind you.
Emily Perl Kingsley.
c1987 by Emily Perl Kingsley. All rights reserved
I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It’s like this……
When you’re going to have a baby, it’s like planning a fabulous vacation trip – to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland.”
“Holland?!?” you say. “What do you mean Holland?? I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.”
But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay.
The important thing is that they haven’t taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It’s just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It’s just a different place. It’s slower-paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around…. and you begin to notice that Holland has windmills….and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy… and they’re all bragging about what a wonderful time they had there. And for the rest of your life, you will say “Yes, that’s where I was supposed to go. That’s what I had planned.”
And the pain of that will never, ever, ever, ever go away… because the loss of that dream is a very very significant loss.
But… if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things … about Holland.