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.

We had a great time at the walk for Children's Hospital. Thank you all so for your support, as it made me feel as I am giving back for all they have done for us. We raised over $1200! It was our first fundraiser like this, and we can't wait to do it again next year!

John is doing well. He is trying to sing, and talk, as well as dance, and sign. I can't even believe everything he is doing. He even started taking some bites of pudding the other day off of my finger. So again I just can't even express all that he is doing. We did meet with our genetic doctor. We all decided that he would not benefit from a FG diagnosis. He did mention that he is mildly mentally retarded, which is not the first time I have heard it, but it is very hard to take in. So I have been processing that one for the last 2 weeks. We decided not to get him diagnosed with autism spectrum disorder as the doctors are not convinced that this is a good diagnosis for him. We were able to get diagnosed with PDD which stands for pervasive developmental disorder. John definitely falls in this criteria, and this diagnosis will get him the extra services that we have been trying to get him. He is just as happy as can be, and we absolutely love him the way he is. I still think he is perfect, although he is getting so heavy to carry around!

Sienna is graduating on Thursday from preschool. She is very excited, and will then start her summer camps to keep her busy, as well as free up some time for John's therapy and doctors.

I absolutely love my job. It is perfect for me. There is alot of down time, so I decided to apply to get my MSW. I am planning on starting in January. The state will pay for this program, and I have been wanting to do this for the last 5 years. I am almost done with my application which isn't due until October! It is only part time, so it will take me 4 years unstead of 2. I just don't think full time school is a possibility at this time. I am sure I am forgetting some more. Here are a bunch of pictures! Enjoy!!

We had a wonderful vacation in Texas. My family has almost recovered from the Hurricane damage. It was very interesting to see the damage of the storm 6 months later. I would have hated to see what it looked like when the storm hit. Little John had an excellent time. Other than pulling his gtube out of his stomach for the first time, we did good. He was in the water almost the whole time, and had a great time. We went boating, to the beach, to the pool, and to a water park in which he sat in a kid tube (with an adult and a lifejacket) and floated around the lazy river all day long. Sienna wants to move there so that we can swim everyday. I am trying to explain that it was a vacation, and we just can't play like that everyday.
I started my new job yesterday, and I think it will be the perfect job for me for a long time. Everyone that I work with has been there for many years, and they still love it there.
So we are doing well. The vacation was just what we needed, and we were lucky enough to see so many different family members. I can't wait until our next vacation! I will get some pics posted soon.

Where to begin... Obviously from the pictures, Sienna had her dance recital! She did such a great job, and loved being on stage performing. She took it very seriously, and I am so proud of her. We are already talking about next years recital! The picture of John is at the Children's museum flying an airplane. He continues to do so well. Right now he is being evaluated for preschool. So on top of all his other therapy appointments, we are meeting with another round of people to transition him into a special needs preschool. We have decided to seek a diagnosis for John. Like we haven't already been doing that. We are looking to get him diagnosed with "autism spectrum disorder". This would benefit him in which he would qualify for a very intensive therapy program. He is not your typical autistic child, but we can put him on the wide range of the spectrum, and like I said before I don't want him labeled unless it is going to help him, and this will help him.

I am so excited to be celebrating my retirement as a waitress this Saturday! I am really going to miss the new friends I have made at the new restaurant, but can always stay in touch with them. I start my new job on June 2nd. After putting in my notice, and getting a start date with DCF, I realized I had a little over a week in between jobs. So we are squeeking in a trip to Texas to visit my family. I have not seen my meme in a year and a half, which is the longest I have ever been without meme time! Sienna has been asking to see her grammy and papa as well. John, well he doesn't care, but I am sure he will have fun. I will try to get the video of Sienna's recital on utube soon.

Hope all is well.

Well, I am absolutely estatic! I got the social work job today. I had to go to the restaurant and quit, but they were more than understanding, and I will work there for another two weeks so they can find someone to replace me. I will miss my new friends at Il Casale, but I can't wait to get back to my career. I had to share the news with you all. I picked up a couple of lobsters, and we are celebrating tonight! Hope all is well.

Well, we had two doctor appointments this week, and things are looking good. GI increased his calorie intake, and things are going well. We don't have to go back for 3 months. I was told we would not be giving him anything to stimulate hunger until he is eating at least 50% of his calories. As of right now he is at 0%! So we have a long ways to go. We saw pulmonary today, John is still doing well, and we made a deal with the doctor that we will stay healthy until we see her again in September! We will not be taking his adenoids out. I don't believe this is necessary, and him staying healthy proves me to be right! Not much else is going on. Sienna is anxiously waiting for her big ballerina debut. She says she is the star of the show. I am still waiting to find out about the job. They called again today, and said that they should have an answer by the end of the week. At this point I would love to still get the job, but I am happy where I am at, and making new friends, and I am not working full time but making okay money. So if I don't get this job, I should be able to go back to social work by next winter.

I can't believe I haven't written in so long. I guess no news is good news! John continues to do so well. He is still trying to stand on his own and take steps. He is also starting to mimick noises which he has never done before. He even said uh oh the other day. He tries to sing twinkle twinkle little star, although it sounds nothing like the song, it is the same everytime. John is also growing. I can tell because his pants are starting to look too short for him. I am so amazed at how well he is doing. As I have stated before I have been taking a break from all of the doctors (except pulmonary which we will see next week) I finally made all the appointments again, so we will be back on the doctor routine. I have really enjoyed the time we have taken off from the docs. We have almost felt normal again.
I keep forgeting to let everyone know that Sienna's dance recital is coming up. It is May 17th, at noon. If anyone would like to go just let me know. This is a huge deal for her as she has been wanting a recital for almost 2 years now!
As of my jobs, I am still waiting to hear from DCF (Social work). They said they would call either this week or next. I am working at the italian restaurant which is going very well. I really like the owners and the people I work with. It is very well run, and it has been completely packed, and we haven't even had our official opening yet.
We are still looking for sponsors for our walk for Children's next month. I will be sending out another email soon. Thank you to all of you whom have already donated. I am really excited to do my first Children's fundraiser.
I hope you all are well. I am still missing Crested Butte (really just our friends), but have no desire to move back at this point. Seeing John with the progress he has made reminds me everyday that we made the best decision for him. We are currently working with the schools to find him a special ed school for him in October. I know that I have provided him with the best care so that he can live to his highest potential, and will continue to work and advocate for him. I miss you all, and thanks again for all your support.

Here are a few easter pics, as well as a not so good shot of Johns first steps. Obviously we have a ways to go, but I am thrilled that he is showing interest in walking and standing on his own. Also the picture of him laying on the ground is him randomly falling asleep while playing in the middle of the room!

I am SOOOOO happy to report to all of you that today John took 3 steps on his own!!!!!!!!YYYYYEEEEAAAAAHHHHHHHHHHHHHHHH!!!!!!!!!!!!!!!!!!!!!!!!!
He holds onto my knees facing me, lets go and walks until he reaches me. I am so excited, and the best is that he is so excited for himself. I just cannot believe that he is doing so well out here.
I hope you all had a wonderful weekend. We went to Vermont, and had a very fun, sugary easter. I think we have enough candy to last us until Halloween. That is even with me helping out! I have been busy, and am not sure where to begin. I got the job at the italian restaurant. I then got a call from social services for an interview. The interview went very well. I am feeling very good about getting the job, but am trying not to get my hopes up. I started the restaurant job last week, and really enjoyed it. It is a nice local italian family (3 boys) who have traveled to Italy and is now opening their second restaurant. They are so nice, and have a lot of respect for their employees. My first night they fed me dinner, I trained for a couple of hours, and then they fed me dinner again with drinks. They served me a total of 9 different selections. Needless to say, I way over ate, and waddled my way home that night. I guess they do this to their new employees to show them they appreciate you coming to work for them. Gotta love those Italians! Today I was training at the new restaurant and got a phone call from social services. They couldn't find my references, and wanted to call and check them today. So I now have my hopes up to get that job. I will hate to leave my new "family" at the restaurant, but the social service job is what I love to do, and it is what I went to college for. So things are looking good for us.
Sienna is doing great. She learned to ski on her own this weekend, and I think her dad is now dreaming of his ski racer he always wanted.
Again, Little John is doing so well. I have been staying away from the doctors. I guess we both need a break. His therapy is what is really benefiting him, and It is great to see him progressing. I will try to post some pics in the next couple of days.

I just realized I never followed up from John's ENT visit. I have been waiting for the doctors to talk, and was supposed to get a phone call. I will have to call on Monday. Basically they do not want to do the sinus surgery on John because of his age. They did want to take out his adnoids. I kind of felt like the doctor didn't know what else to do so this was the only thing he could think of. He wanted me to make the decision, but I was not going to. We decided that he should talk to our pulmonary doctor, and our Primary care doctor and see what the three of them think. I have seen the other two doctors a bunch, and if they recommend it I will consider it. I just don't feel like putting John through a surgery if he doesn't need to.
John is still doing well. I am extremely happy with the things he has been doing. He was collecting all the toys in the bath the other night so that his sister couldn't get them, and he had a play date yesterday, and the two boys fought over a toy the whole time. It was good to see him doing this stuff. We have been doing his feedings during the day, and hopefully soon we can start to stimulate his hunger so he might start to eat.
Things are going well here. I have had three job(waitress) offers, and have narrowed it down to two. I also got an interview on Tuesday for a social work job in a homeless shelter for women and their children. I applied a couple of weeks ago, and never heard anything, so I assumed they found someone else. They called, and I am so excited about this job possibility. It would be similiar to what I did before. It would be through the state which would be wonderful for benefits. I would be working Tues-Sat 3-11:30 pm! It is a little more than I would be working in a restaurant, but at least I would be doing what I like to do, and using my college degree! I would definitely have to hire some help cleaning and taking care of the kids a few hours a week, but I have been very anxious to get back into social work. So wish me luck!

John just had a great week. He is very interested in learning new signs, and seems to be picking up on them faster. He can now do the two signs along with twinkle little star! Very cute. His nose seems to be doing a little better. We are meeting with the ENT doctor tomorrow to see what to do about his sinus infection. Therapy still continues to go very well. We took John to a train show yesterday, and he was absolutely fascinated with the trains. It is so nice to see him starting to have interests. We found a nice park in the town next to us. John is able to use his walker there, and it is so nice to see him independent at the park. I am normally guessing what he wants to do. He even spent some time checking out the fence!
On another note, I quit my job. I tried to give them a 2 week notice, but I just couldn't do it anymore. Some of the people I worked with were great, but the others including the owner weren't nice at all, and I was doing a lot of work that I should not have been doing. I have never just left a job like that, but I just didn't feel like I owed them anything.
So I have started interviewing for another waitress job. I think I have found two, and will find out this week. Both are a lot better run, and seems like a better fit for me. We will be meeting with the school district in two weeks about John starting school in October. I still don't know if I will be able to work full time Monday -Friday, but it will give me so much more freedom to do something with.
Sienna is doing great. She continues to make new friends. She is starting soccer in a few weeks and is very excited. I got her a pink soccer ball to practice with, but it is not allowed to get dirty! We will see how soccer works for us. For those of you interested her Dance recital is on May 17th at noon. Anyone is invited, so if you would like to go, just let me know, and I will get tickets.
We are still excited about our fundraiser for Children's. We have had so many people sponsor us already. Thank you again to everyone that has helped us.

Thank you all who have already sponsored our walk for Children's Hospital. I can't thank you enough for your support. We have almost met our $600 goal, but don't plan on stopping there. We will be a "miracle maker" if we reach $750! I feel like Children's has done so much for us, that this is our way of paying them back. The walk isn't until June 14th, but if you would like to sponsor us, and help so many children similiar to John, and a lot that are worse off than John. Go to
http://howtohelp.childrenshospital.org/walk/pfp/?ID=AJ0041
John is doing well. He doesn't have too much going on this week. He is supposed to see the opthamologist again, but I think I am going to cancel. It isn't that important, and I am starting to be a lot more selective of the things they are doing to him. He will be seeing the ENT doctor next week, and we will then hopefully find out what the next step with his sinus infection is. I hope you all are well. It is starting to look like spring out here, and I can't wait for it to stay warm.

So the website is ready.
http://howtohelp.childrenshospital.org/walk/pfp/?ID=AJ0042
We all need to raise $150 each!
I will be pushing everyone to help!
Thank you all for your support!!!
Anyone is invited to join our team.
TEAM ANGIER

I have been trying do a post, but it has been so nice out I have not been able to find the time. John is doing good. He is cutting his molars, still fighting his sinus infection, and has started a horrible habit...biting. He gets really excited and bites me, and he just thinks it is so funny. I am not sure how to break this habit. When I tell him that is bad, he just continues laughing, and doesn't pay any attention to me.

We have had a busy week. It is finally getting nice out, so we have been able to go for walks, go to the beach, play at the park, etc. This last week John met with the feeding team at Boston Children's. He did pretty good, he sat in the highchair, played with some food, and then threw the jar of food across the room. There were bananas on the door, chairs, walls, ceilings, cabinets...I warned them about this. It was just an evaluation, and I am not sure what we will be doing with them next.

Today we had a follow up at the dentist. We will go back in another month to get his cavity filled. I can't wait.

Today I signed the family up for a walk for Children's hospital. "Team Angier" will be walking 2 miles, on June 14th. We will be looking for sponsors from everyone, so be ready! If you are interested in joining the team, let me know, and I will send out the info. I am working on the website right now, but as soon as I am done with it I will be posting it on this site. I am expecting EVERYONE to help us raise money. So start saving now.