By: Andrea G, mother of Jonas
Emily Pearl Kingsley, a longtime Sesame Street contributor, wrote Welcome to Holland in 1987.
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 trip – to Italy. You buy a bunch of guide books and make 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 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 never would have meet. 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 you catch your breath, you look around… and you begin to notice 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 go to Italy, you may never be free to enjoy the very special, the very lovely things…about Holland.
Kingsley’s words serve as an image of the life Michael and I know all too well. Jonas, our first and only child, began to show clear deficits in his development by the time he was 4 months old. Jonas displayed poor head control, absence of reaching to grab objects, and strikingly low muscle tone in his trunk. By the time Jonas was six months old he was still unable to sit with support, hold a rattle or baby toy for more than a second, or roll from front to back.
An MRI revealed that Jonas had severe encephalopathy. Doctors could not give us the answers we so desperately wanted. Would he walk? Would he talk? What did this mean for our family? We were filled with fear and uncertainty about Jonas’s development. Every time I took Jonas to the pediatrician for his well checks I was brought to tears by the reminder of all the milestones he had yet to reach. The months turned to years and our uncertainty about Jonas’ development coalesced into an undeniable reality.
I can’t say that our “worst case” scenario materialized but, Jonas – at four years old – is still in diapers. Without maximum assistance and support Jonas cannot sit, stand, or walk. Jonas is unable to talk, eat foods more solid than puree, feed himself, or perform any other self-care activities like dressing and bathing. His diagnoses include HIE, cerebral palsy, strabismus, cortical visual impairment, global developmental delay, and feeding difficulty. Jonas has weekly physical, occupational, speech, and feeding therapy appointments. His many specialists include a neurologist, gastroenterologist, ophthalmologist, and orthopedist. In his collection of medical equipment you find a wheelchair, stander, gait trainer, bath chair, ankle foot orthotics, knee immobilizers, and feeding tube. I have experience of things now that years ago were only part of my worst nightmare. Our life includes a lot of things we happily would do without. However, if we got rid of these things, we would not have Jonas.
In my opinion – and I know lots of people who agree – Jonas is one of the cutest, sweetest, and most endearing little boys. His smile and laugh are contagious! Despite the disappointment and sadness I struggle with, my life with Jonas gives me a love and fulfillment beyond anything I could have imagined. Michael and I do our best to include Jonas in our lives just as if he were a typically developing child; logistics and medical equipment can make this more complicated but we have adapted pretty well. Jonas is still little and relatively easy to move around, but this will not always be the case. As he gets bigger we will need different equipment and more help to provide for his needs.
I am so grateful for the many resources and services available to families who have children with special needs. Because of Jonas, I have meet so many awesome and inspiring people. Life with a special needs child can be isolating and frightening – especially when you’re new to it – but, in the midst of this alien existence, there is much hope and many blessings to find.