WELCOME TO HOLLAND
Emily Perl Kingsley
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. (c1987 by Emily Perl Kingsley. All rights reserved)
I’m well aware that congenital hypothyroidism is not a disability, and I am aware that there are things that other children face that are much more difficult than congenital hypothyroidism. However, I can identify with what this mother has written. After trying for 2 years to conceive a child, I was devastated when my first son was born with congenital hypothyroidism. Then, I had another son also born with congenital hypothyroidism. Despite being the most benign of all endocrine disorders (as some have dubbed congenital hypothyroidism), it is still not something you want your children to have. All it takes is a few days of reading the various other thyroid blogs to see what adults with thyroid disorders go through. Now, imagine your child dealing with those things from the day they are born. It’s hard to imagine that, though, right? It is not something that many people I know can identify with, and I have often felt very alone. Ms. Kingsley’s explanation is spot on for what it is like raising a child with chronic illness.
In those first few years with my oldest, I didn’t know anyone else going through this – not one single person. There was nothing anyone could say to make me believe that they knew what we were going through. They didn’t know what it was like to face never ending blood draws or to constantly worry about whether the boys were getting the right dose of medication (it’s not easy to give a newborn medication that only comes in pill form). I constantly worried and wondered, especially during that first year with my first son, whether everything that happened was normal baby or caused by the congenital hypothyroidism. People tried to comfort me, but in the end, I stopped talking about it with most folks because I knew that they didn’t really understand and I had no good way of explaining it. It wasn’t really easier when my second son was born and diagnosed with congenital hypothyroidism because people told me things like “well, at least you know how to handle it”. Perhaps, but this poor baby didn’t know how to handle it. He’d never been through blood draws before. He was the one whose heart rate became so rapid because of being over-medicated that he was nearly hospitalized. He still had to go through this and just because his brother had been through it didn’t mean that it would be necessarily any easier on him and as it turned out, it wasn’t. His first year was much more difficult from the perspective of regulating his thyroid hormones. As for me, I now had double the doctor appointments, double the medication (& costs), and double the worries. I know, though, that people were just trying to comfort me and for that, I am eternally grateful. I think that this story written by Ms.Kingsley helps those of us who want to explain but can’t always articulate what things are like and it helps our families and friends that want to understand and be supportive.
I now have a community of support that I’ve found and also that I’ve built on my own. So, that part has changed – I now have folks that I can talk to that really know what this is like. I’ve also found the courage to start talking openly about what we have been through and are going through. I am constantly finding out new things, though, new illnesses or disorders that are linked to congenital hypothyroidism. My boys have other issues aside from congenital hypothyroidism. I look at my boys and wonder would have they have had these things anyways or is this because of their congenital hypothyroidism? I have heard that puberty is more difficult for children with thyroid disorders, so I worry about that. I worry about what will happen when they go to college, and I’m not there to remind them to take their medicine. Will they take care of themselves? Will they go to the endocrinologist regularly? I worry about what other conditions they will have as they age – will they inherit the other autoimmune disorders that I have? But- at the end of the day – I don’t obsess over these things. I am reminded that this is our family’s journey. We are traveling to Holland together. We may not make it to Italy and that’s okay. Because as Ms. Kingsley so eloquently said, “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.” I’ve already experienced a taste of the “very special, very lovely things” about raising children with congenital hypothyroidism.
By Blythe Clifford aka Thyroid Mom