CAUTION: This post is probably might be oozing a little more than people are used to from my blog…
Anyway, last year, June 17, 2008, to be exact, my wife and I were gifted with a baby boy. As an added surprise, he was born with Down Syndrome. Immediately, we were hit with the full range of emotions, the usual happy giddyness that comes with having a child, the anger and frustration about not knowing about the diagnosis beforehand (a whole saga in itself), the worry about what the future will hold for him.
To this day, ten months later, I look at what is perhaps the sweetest little boy in the world and I still tear up while trying to put the “what ifs” out of my mind.
Here is an essay I recently stumbled across that sums up my thoughts and feelings quite well. The author is/was a Sesame Street writer with a son with Down Syndrome:
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Welcome to Holland
by 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 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…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 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.
© 1987, by Emily Perl Kingsley
Health-wise, we’ve been lucky so far…through countless specialist appointments, he has been cleared of most issues associated with Down Syndrome. His heart and kidneys are good. He’s got little glasses to correct for far-sighted vision, and hopefully get rid of his eye-crossing. Through the New York State funded early-intervention program (which has been a bureaucratic horror show–it’s just now getting better), we have a handful of different therapists working with him at the house. It’s a rare day when there isn’t a therapist around for an hour or so. Even at 10 months of age, our intent is to give him the best shot at normalcy as we can.
Anyway, even so young, he has a personality that just begs to be mushed up, and he’s perfectly happy to let even perfect strangers cuddle and hold him, offering up tons of smiles and baby talk and wet, slobbery baby kisses. While he’s awake, it’s impossible to ignore him–not because he’s crying (a very rare occasion), but because he’s so cutely irresistible. Thus, the only time I seem to get work done these days is when he’s asleep.
I don’t know if anyone remembers a year and a half ago while I was still advertising on the Warrior Forum practically giving away Caffeinated Content as a WSO, I would take 10% of my sales and donate them to various charities. One of the most rewarding charities involved providing needy children with Christmas gifts and has become an annual family thing, now. In the name of Caffeinated Content, I’ve also donated a tidy sum to Autism Speaks. Now, though, I think it’s appropriate to direct a portion of future sales to one of the major Down Syndrome organizations. So that’s what I’ll be doing for the next indefinite period of time. 
Strangely enough, even with all these words, this post just seems unfinished. I guess if I figure out why, I’ll revise it.
29 Comments
A very nice post and a very thoughtful poem. Thank You for sharing a special part of your “real” life. We all forget sometimes that there are far more important things than serps and keywords and ctr. I think you have been blessed and your precious son has also been blessed with great parents!
Thanks Again!
Hey Jason,
Your son is adorable and so fortunate to have parents like you! Thanks for sharing your “heart” and supporting a very worthy cause.
May you and your family be blessed!
Jason, it is at times like this that we are broken, tried, built up, refined, and come out a better and stronger person, or worse.
Thanks for not giving up and taking shortcuts.
Hi Jason,
Your son is adorable and such a happy baby.
My nephew is almost 18 years old. Actually on the 25th, he turns 18. He also was born with Down Syndrom. I remember our reaction as well, like it was yesterday, but just as you, we accepted him into our hearts just the way he was, and even though there were some challenges, he goes to special school, loves it there, he get’s sick ever once in a while, but I swear I have been more sick than he has. He is fully capable to take care of himself, we just don’t let him go to the city by himself, but he will go to the store and buy simple things on his own!
But the best part is, that NO one else can give you that unconditional love, like he can!
My niece was handicapped. It was amazing what she taught us all about perseverence.
The things we learn from different events in life will surprise us.
Rick
I’m glad for your baby boy it has such great parents!
I wish you strength and many happy moments!
All the best!
Jason,
What a great post. I commend you for bringing this to the forefront of your blog.
As a father of a child with Autism I can certainly relate. My first forays into Internet Marketing were to earn a little bit extra to fund the early intervention therapies my son needed to succeed.
Fortunately it worked… quite well in fact. My son just turned 10 (he is the oldest of our 3 boys), he has mainstreamed into 4th grade while still receiving pull-outs for speech & language and social recreation.
I believe we’re truly blessed, and my expereince online has expanded those blessings exponentially.
Feel free to check out the rest of the story at: http://www.camforbes.com/latest/why-i-do-what-i-do/
…and please keep in touch.
Hi Jason,
I know how you feel, my first child, a wonderful little girl was born with Downs Syndrome. The first couple years seem like an endless trip to doctors and specialists and the constant wondering of what if. She turns 6 this June, runs around and plays with friends, enjoys school, and just brings so much joy into our lives. And as a previous poster above mentioned, you’ll never see such unconditional love as that from a child with downs. The early years of fear and questioning why us, have been replaced with a daughter who every day reminds me of what’s really important and fills our lives with happiness. She spends a lot of time at her own computer working away on games and puzzles right beside mine as I build my blogs. Maybe one day I’ll get her to write posts for me, lol.
Your little boy looks like a charmer. His smile is genuine and he sees life as a big playground to be enjoyed. Something we can all learn from sometimes. I wish you all the best in raising such a happy little boy and fear not. He will surely surprise you with his capabilities as my daughter constantly does with hers.
Cheers,
Great post!
Enjoy your son, love him, and let him love you…
I’m really proud of you as “Good” parents! May God bless you!!
Your son is really adorable. Thanks for sharing your real life experience with us.
Take a look at the Institutes For Achievement of Human Potential, they have worked wonders with special kids http://www.iahp.org
(I got to them because of our son, he is the autistic spectrum)
Thank you for sharing such a beautiful poem, it could be a real eye opener for some.
There’s a great non-profit organization in Maine (The Bridges Foundation) which provides employment, social & recreational opportunities for persons with down syndrome, autism and other disabilities and your comments about your donations reminds me how important it is to support these types of organizations, both financially and with one’s volunteer time. So, thank you for the reminder
so cuteee… God bless you….
This is such a heartfelt post. I really wish you and your family all the happiness that you all deserve.
Wow…Welcome to Holland is a great essay. That is a great way to look at things, and it’s good to see your son has caring parents who have the right outlook. You (as a family) will go far and your son will thrive with that kind of environment. I’m glad you posted this.
My heart is completely with the child. Now the child is completely unaware of its inability, But when grown up the child have to endure lot of pain. Its so hard to even think of such conditions. God be with the child!
Wow. What a moving post. I live in such a self created bubble, and am always glad each and every day that my 2 boys are healthy. I forget the beauty that comes from the challenges life throws at you. And your boy is definitely beautiful=)
Thanks for giving us a glimpse of your life (oh and of course great products!)…Take care and I’m quite certain that Holland is a more fabulous place with the influence of you & your family.
Very Cute baby. God Bless, You!
very beautiful baby. God Bless you! Thanks for sharing.
My heart goes with you.Your baby is so fortunate to have such a loving parents. god be with the child.
Thank you for such a beautiful post. Your son is so lucky to have you for parents. He is beautiful and you recognize that and that is wonderful. Your description is so very true for parents who have children with disabilities – a very beautiful poem you have selected there. May God bless you in every aspect of your family’s life. With Love, Raleigh
Hmmm!!he is so sweet and cute baby god bless him..
You are an inspiration. I see so many people that have children that are, or appear to be unwanted by the parents. It is good to see someone so loving!
I am happy to hear that you know you were blessed with a child. Some people do not even get to have children. He will be grow up to be fine if he has the parents he has now.
what a great philosophy in that wonderful article for Emily Perl Kingsley and brother believe me the childhood and children what ever they are are an little angel full of love and innocent felling that can makes our hearts shacking and crying and fot those parents and many whome like them may GOD be with you all and be sure that he will never makes you suffer or tire from that
salam
thanks for sharing that great story about your son bless you and yours
We have to take a valuable source of inspiration from those people who are handicapped and working hard for their living. Being a normal person is a shame for me when i saw myself showing abnormal behavior
wow – I also have a boy who was born autistic. He actually has a rare brain malformation called ACC (which was the same thing that the guy from the movie “Rain Man” had in real life). Anyways, your son is a great gift and will teach you a lot about yourself. He will make you a stronger and better human being. But most of all, he will bring you great joy and happiness and for that you owe him your love.
PEACE brother.
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