Welcome To Holland

In grad school our professors bombarded us with all kinds of readings, not just on theories and treatment plans, but with essays to try and help us understand the impact of what having a child with special needs means or at least empathize with the families that we would one day be working with. "Welcome To Holland" was one of those essays. Since I had Sam I have come into contact with many other families who have children with special needs and this same essay continues to cross my path. I have been reluctant to read it again because the certainty of it scares me. To be honest it scared me when we were first presented with it in grad school and the thought of having my own children wasn't even in my mind yet. But now as I read it again I am not so scared. The essay came across my path one more time just recently and was sent to me by a very special mom.

WELCOME TO HOLLAND
byEmily 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.

Forgery

Believe it or not sometimes I just get a little sick of writing about how hard my life is and how angry I am so here is something a little bit different. If you all really love me then thrill me and reply. I was just reading my friend Joe's Blog and it was such a fun post that I just had to copy it. So here it goes, if you could choose one song to perform karaoke style what would it be?

Mine is and probably will always be Cracklin' Rosie. Why? I have no idea. Maybe because I have no voice and you can't do that much damage to a Neil Diamond song. Or maybe because it is just a lot of fun to sing about a guy and his inflatable love doll. Who knows??? So what would you sing???

Happy Anniversary

Scott and I celebrated our 4th wedding anniversary. It was actually on Thursday the 16th but we went out to dinner on the 17th. We went to the River View Cafe in DUMBO. For those of you that live in the city I highly recommend crossing to the dark side over the Brooklyn bridge and experiencing this really amazing and beautiful restaurant. The wait staff was friendly, attentive and unpretentious. The food was fabulous and so was the wine selection. There is a dress code, but it made the evening that much more special. Scott and I have not felt comfortable enough to leave Sam to go anywhere and enjoy ourselves. So this was a first in a year. Our last anniversary we spent in the hospital. Its crazy to look back and see the difference a year can make. The evening was a lot of fun, much needed and well deserved. Happy Anniversary Scooter, I love you!!!

Welcome To My World...

The phrase once you have children its not about you anymore has taken on a very different meaning in this household. For the last week and a half Sam has not been himself at all. He has been crying non stop and has refused to do any kind of interactive or therapeutic activity. To say the least it has been really tough emotionally and physically for the both of us. Sam needs a lot more stimulation and motivation then most other children for everyday activities. Life is just too difficult for him. It would be much easier for Sam if I allowed him to just lay around and do nothing. I try very hard not to do that, but sometimes if he is really out of sorts you kind of just have to let him be. Kids can get burnt out just like adults. It is scary though to see your baby regressing a little.

Today he did much better thank god. He was much more interactive. He sat up without support for the first time in the last week. It is so frustrating when you work so hard everyday with your baby and then you see regression. Its like finding out there is something wrong with him for the first time all over again. OK so its obvious that Scott and I do a lot with Sam. A lot of credit has to go to his therapists, nurses and grandparents too. There are a ton of demands placed on Sam and in turn there are a TON of demands placed on me as well.

In previous postings I wrote about Sam's intensive therapy plan, but what I didn't write about was the management plan that I am expected to carry over every single day. It is ridiculous. So in between dealing with nursing, insurance, ordering medical supplies, managing his appointments, running to the hospital for emergencies (we were just there again yesterday), taking Sam to weekly doctor appointments all over the tri state area, washing him, changing him, taking care of his feedings, venting his stomach tube, suctioning his mouth so he can breath, giving medications, and doing breathing treatments, his therapists would also like me to do the following: for swallowing I have to stimulate a swallow with a cold spoon 20 trails 3 times a day, do oral motor exercises and encourage Sam to put oral friendly objects into his mouth, for special instruction I have to make Sam an experience book using pictures of all the people in his life, have him interact and experience going through kitchen cabinets and drawers, work on simple concepts like waving hi and bye, open and close, and up and down, read stories, etc... for occupational therapy and physical therapy I have to put Sam in his stander 3 times a day for 30 minute intervals, have him reach while supporting him in a quadruped position, do sit ups, pull objects in and out of containers, do exercises on his therapy ball, and have him experience sitting unsupported as much as possible.

Yeah OK I'm getting right on it. I'm sorry would you like fries with that too? And then some of the people that come into my home say, "Wow, you look really tired" or "You look way too skinny." Well no fooling Freddy would you be able to eat and rest if you had to do this much in a day. The one thing to remember is that its not about me, its all about Sam. As long as he is able to tolerate everything that he has to do in a day then it gets done. God bless all of Sam's therapists, nurses, doctors, friends and family. Sam is benefiting so much from all of this. I however look and feel like I aged 20 years, but who cares. Giving Sam the best chance he has in life is worth anything and everything.

Ahhhhhh To Be 1 Again

Brooklyn Top Ten

"Just when you think your out it pulls you back in." Quote from Grandma Lorraine. Its crazy where life takes you and how it takes you. Scott and I thought for sure that at this point in our lives we would be living in a nice house in Livingston, NJ probably with my own practice, blah, blah, blah... Then of course plans changed and we had no choice but to move to Brooklyn. Now, there are certain parts of Brooklyn that are really cool, but we are not in one of those parts. We live in Bensonhurst, which is a culture of its own. We did learn how to enjoy our time here and make the best out of it. So here is our top 10 reasons of why we love living in Bensonhurst.

10. Our scenic view is of our neighbor's bloomers hanging on the clothes line.

9. We learned that the f--- word can be used as a noun, verb, adjective, and a preposition.

8. I can see all of my neighbors on the entire block in their yards at the same time by just looking out my bedroom window.

7. There are real life mafia dramas going on in the back of my house. Goodbye Sopranos hello Cropsey Ave.

6. Fat male butt crack is in style in my neighborhood.

5. Nathan's (the real Nathan's) is 5 minutes from my house, and you know we go there for breakfast, lunch, and dinner.

4. Everyone's car is sparkling clean. If not you'd probably get shot.

3. You have the best of China, Italy, and Russia without having to leave your block.

2. No one speaks English yet everyone gets along.

1. Scott can go outside to throw the garbabge out in nothing but his tighty whities and a t-shirt, spark up a conversation with our neighbor in front of all Cropsey Ave. and not think twice about it and this is totally acceptable.