Life with a special needs child is challenging.
It’s frustrating, demanding and exhausting at times, but it can also be equally unique and special in many instances.
One thing Carson’s disabilities, which include lack of speech and major developmental delays, among other things, has done is force us to live day to day.
With a special needs child, such as Carson, 5, long-range thoughts, goals and dreams are quelled by the rampant uncertainty fueled by never-ending worries and doubts on what more can we do for him. Are we providing him all he needs? Should we be parenting him in a different way than his older brother? Are we asking too much from him? Are we not pushing him enough? What can we do further to help him reach his benchmarks? Why did I get so upset with him for pushing the table over for no reason?
We wake up, face the challenges that come with each and every day and go to bed exhausted, preparing to do it all over again the next day. Thoughts of life beyond the day ahead are too scary, emotional and depressing to weigh with the current hectic pace of life.
By taking every day as it comes, we feel we are best able to micro-manage Carson and confront immediate challenges. It at times does not feel like the correct approach, but we feel it’s the best way to live a healthy life for ourselves as parents and for our boys.
There are sad days mired by disturbing behavior incidents, obvious indications he is not at the level of his peers on many levels and strange and unpredictable actions that are highlighted by temper tantrums that appear to be borne out of his own frustrations with himself.
However, we thank God that there are uplifting days as well. There is the incredible hug at the end of the day that seems to relay what he can’t say — thank you in the most simplest of forms.
There are the overly aggressive yanks on the face in close that are initially feared to be leading up to a slap to the face — that has happened in the past — but never comes and instead result in his lips lightly touching mine because he can’t pucker up the way most of us can.
After the end of a particularly long day earlier this month that involved a school meeting about Carson, a friend shared something we me that brought Pam and I both to major emotions. It’s called “Welcome To Holland” by Emily Perl Kingsley.
It sums up life with a special needs child and Pam and I identify with it on so many levels because of our long, unique and difficult journey to becoming parents.
In fact, parents who face other daily challenges that come with raising so-called “normal” children may also identify because invariably there are times when you question if this journey is supposed to be this difficult. I think the answer is yes, but the rewards along the way are tremendously humbling and inspiring.
That’s why this piece hit home in so many ways. I hope you enjoy it as much as I did.
Welcome To Holland
by Emily Perl Kingsley
When you are going to have a baby, it’s like planning a fabulous vacation to Italy. You buy a bunch of guide books and make all your wonderful plans: the Coliseum, Michelangelo’s David, the gondolas in Venice. You may even 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 has 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 go out and buy new guide books. And you learn a whole new language. And you meet a whole 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 awhile and you catch your breath, you look around and 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 are all bragging about what a wonderful time they had there.
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 go away, because the loss of that dream is a 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, and very lovely things about Holland.