Welcome to Holland
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 guidebooks 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 some horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go out and buy a new guidebook. 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."
The pain of that will never, 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.
Written by Emily Perl Kingsley


Again I am so sorry I have not been posting on our web. I love this poem, so I am going to leave it until something new comes up. I will post here when something new happens. As of now John just continues to move forward. I can't even keep up with all that he does.

So little John was admitted to the hospital yesterday. We thought it was H1N1, but it turned out to be RSV. He also has bacterial pneumonia, and they have been watching him for encephalitis. His stats were all over the place, and he was finally given a room after 2 in the morning! It is a little abnormal for a 3 yo to get RSV, especially to become hospitalized, but due to his health conditions he went down quick. They are watching his stats, and he is doing a little better. He should be fine, but they are keeping a close watch on him. I will keep you updated. We are all fine, just spent!

This will probably be a long one as I have a lot to tell you all about! We finally got a diagnosis. We have been talking about this one for a while, but as of now it is our diagnosis. FG Syndrome..What is FG Syndrome? Well, remember Rainman. I recommend looking it up, as it is not an easy one to explain. I have to say, it is kind of fascinating to read about. It explains a lot. I guess 1/3 of infants and toddlers die from respitory infections which explains his illness he had until we got into see pulmonary. So when I say I he almost died there before we left CB, I honestly felt that was true. So my advice to you moms out there, go with your instinct. I have a lot of respect for doctors, and feel they tried their best, but I knew there was more to it, and I did what my instincts told me, and today John is feeling great! As you remember in Rainman, he was extremely brilliant. I have said for a long time that my son is a genius, he just hasn't had a chance to show it. Anyone that has worked with him, or even has met him agrees. That part of rainman is "Savant" we have not been diagnosed with Savant, but I do believe that it is in the future. The original Rainman's name is Kim Peek. If you google him, you will learn that he was diagnosed with FG syndrome just last year. Absolutely fascinating, and if my son was to be diagnosed with anything, this one is not so bad. The best part, is that it is going to be a complete mystery to what this boys future will be like.
One not so good part to this is that more than likely he got the gene from me, which makes Sienna a carrier. So when it is time for her to want children, we will have to work with a specialist. So I guess I better start saving my money now, and hope by then they will be able to work with this.
On another note, it was exactly a year ago yesterday that we landed in Boston. Ironically I had a dream the night before that we had decided to move back to CB now that John is Healthy. It was so great to see our friends, but I have to say, I was bummed to leave what we have going for us out here. I still love my job, and am waiting to hear about grad school. Sienna is doing so well out here. She just finished soccer, and is now starting ice skating. After one lesson she already knows how to ice skate on her own. She is rehersing for the Nutcracker, and has made more friends than I can keep track of. Things are great here. John is doing so well in school, and I could not be happier with his education he is receiving. Sienna's school is equally good, so I am very content with our lives here in Boston. Even Johnny has been doing good considering the economic times, and starting his real estate business at the time he did.
So on that note, it will be very interesting to see where John ends up in life. I can't wait to watch him, as I know he is already so unique, and will continue to keep everyone guessing. I am so lucky to have such a sweet boy in my life. They do not come sweeter than him!

I can't believe how long it has been since my last post! No news is good news. So where to begin with the update...
John is now walking!!! He is selective and only walks when he wants. He is really fast scooting, so he would prefer to scoot, but we are working on him. He is doing so well in our new house. He can get anywhere in the house. He has a few words now. Hat, and hi. He is also mimicking noises, which is a great. John is starting preschool on October 19th! The town we live in has a wonderful special ed program. We have already met with his "TEAM" and I have a really great feeling about them. Things are really going well for us here. Our neighbors are wonderful, it is quiet, and very dog friendly. It sure has been nice to get our own place, our belongings back, and settle down. Sienna is doing wonderful. She started Kindergarten inwhich she loves. She is making more friends than I can keep up with. She has a new boyfriend, (but still claims that Blake is her Crested Butte boyfriend!) She is playing soccer, and doing ballet. The little girl upstairs is 2 months younger than her, and they have become best friends. It could not have worked out better for us here. I am fortunately still working at the shelter. Due to my previous employment here, I was able to use "Seniority" and avoid layoffs! I also qualify for ed pay, so I am applying to go to grad school to receive my MSW! I am sending off the application this week. The school I am applying to has a pt program which allows me to continue working. Since John is going to school 5x a week, I figured I should take advantage of this opportunity. I have a lot of down time at work that I will be able to do homework.
Johnny is getting busy at work which is good. He has been doing a great job as Mr. Mom.
So again everything is going well here. I cannot access my blog at work, which is why I am not updating much. I will try to do better. I will also try to post some pics. I hope you all are doing well, and thank you again for your continued support!

Well, we are getting ready to move! We are allowed in the apartment to paint and clean, so we have been over there the last couple of days. The neighbors above us have a little girl one month younger than Sienna, and they get along already. Little John is so excited there. He can scoot, and walk (with his walker) around the whole place. He scooted so much the last couple of days he has a sore on his ankle. He is still doing good. We haven't been to any doctor appointments lately, but we will begin another round of them started at the end of August. Last week his therapist made him a picture book of his favorite toys, the car, stroller, bike cart, me, Johnny, Sienna, etc. He absolutely loves it. He gets so excited to pick out which toy he wants to play with. I guess the other day while I was at work he was looking at my picture saying ma ma. So I am not writing much on the blog these days, but I will continue to keep you all updated. I am happy that there isn't much going on. Like I said we will start going to the doctor a bunch after August, so I am sure I will be on more. Hope you all are well. We will be moving the next couple of weeks, so I will be busy.

Well, we are moving into our own place. We signed a lease last week on an apartment in Belmont. We get to move in Aug 1! Belmont is the town I was waiting tables at, and I have loved it ever since. I found some movers that will move our stuff from CB and bring it to us so that we do not have to deal with going back and getting it. We are ready to get our belongings out of storage, and settle down in a place. One reason I picked Belmont is because the schools are some of the best in the state. It will be good for Sienna, as well as for little John. They have excellent special ed programs. He is still going to get to go to preschool this October, and will transition from Cambridge to Belmont in time for his birthday. So exciting I can hardly wait. The apartment is big and open, and everything is on the first floor, so John will have the freedom to move around as he would like to. So that is our exciting news. Work is still going great for me. I am a little nervous about budget cuts and layoffs. I am sure I am not the only one. Hope you all are doing well.