Welcome to Holland

I was reminded of my journey through Holland this week when a friend of a friend who I have gotten to know over the past few years had her little girl who is blessed with a designer gene. They were given some information early on, but had opted to "wait and see" as opposed to having an amnio done. We chatted briefly through texting and they are so happy to have their little girl here with them, but I am sure I can only imagine how they are feeling.

Chris and I lived in a fog for a week until Colin's diagnosis was confirmed a week later. Despite the fact that I knew he had Down Syndrome, the day the diagnosis came in was the hardest day I have ever faced. My friend Jorie had brought a packet of information for me to the hospital and one of the things she had found was Emily Perl Kingsley's "Welcome to Holland". I didn't stumble across it until the day the diagnosis came through "officially" and I fell in love with it.

Although I can give lots of advice to new moms and dads of a child with a designer gene, it is still a journey we all need to go through alone and in our own way.

To any new mom or dad...

#1 - no matter what you are feeling, it is ok. Until you get comfortable where you are, there are going to be lots of different things that you may feel and go through.

#2 - Enjoy your little baby. I think that worrying comes with the territory, but just enjoy them and love them.

#3 - I promise you, your life will be changed in so many wonderful and beautiful ways...

Welcome, my friend, to Holland...

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 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.

Easy

The other day, we decided to try out the puffs with Kailey to see what she thought of them. We realized it was a bit too early once we put them in her mouth, BUT, watching her touch and handle the puffs made us realize how easy some skills come to typically developing children.

On her first try, she used that good ole' pincer grip and picked that puff right up.

Do you know how long it took for Colin to do that??

It has been so interesting for us to watch kailey after having Colin. We wouldn't trade either child for anything different, but it is quite interesting to see and watch the differences. It is so easy for typically developing children to do certain things. I am proud of Kailey for what she can do, but also proud for how hard Colin works to do the same things...

I Did It

I did it!! I completed my first ever half marathon! I am especially grateful to a supportive husband...

...two loving little kids who were my motivation

...and a trusty pair of running shoes...

I ran 13.1 miles today!

It was a beautiful run with the majority of the scenery the NYC skyline. I got the chills every time I would make a turn and see the new Freedom tower being rebuilt...

It is a beauty, and a reminder, of all those we lost on 9-11. We still have our freedom, and are proving this by rebuilding...

I also ran through Liberty state park and along Ellis Island and the Statue of Liberty herself. What a beautiful run!

I am proud to say that I finished in under 2 hours (my goal!) and think it was about 1 hour and 52 minutes.
Exhausting, but glad I accomplished my goal.

I also have to say thank you to my parents because even at 30 years old, they still come to support me and cheer me on!!

One of Those Days...

I turned on my camera tonight to take a look at my selection of pictures to upload for the blog and I realized that I haven't taken very much lately! Colin hasn't been feeling the greatest because of allergies and every free minute I have is either spent preparing for the next day or getting school work done (or my window of time when I can PLAY with the kids).

* Forewarning: this post may contain some negative material resulting from my frustrations, being tired, and a day that just wasn't how I wanted it to go. *

Couple of little things that have been going on here lately. Colin had a pretty big punishment the other day because he hit Kailey in the head (fortunately, it didn't bother her) and when I told him no, he looked right at me and continued to hit her until I could get to him in time. I put him in his room while he cried, put her in a new location, and went back to get him and make him apologize. His relationship with her is so funny, and I'm sure it's like that with most toddlers (or so I hope!). One day, I can post a video like the one from the doctor's office of them having a great time with each other and then the next day, he is abusing her. This goes with lots of things; one minute he will have a conversation with her and then the next he is pushing her in the eyeball because she got too close.

A lot of times, I try to initiate "bonding" by putting them next to each other while Colin watches his dose of Baby Signing Time. Kailey will try so hard to get him to talk to her, but sometimes, it's like she isn't even there. Men. (wink wink)

When it comes to therapies, we feel like we are on the flipside of where we were. Not too long ago, Colin was getting 6 hours of therapy a week, and now with lots of changes going on, he is getting 3, but not consistently because of schedules and changes and such. It's great on the one hand, but makes me feel uneasy on the other. It's something that you are told from the beginning, "the more the better" and although I felt like it was too much for awhile, now I wonder if we are doing enough.

...For two reasons. The eating stuff is still horrible, although, fortunately he is at least eating again, but it sometimes makes me feel like we will NEVER overcome this. Independent eating seems so far off the radar now. It's exasperating. I honestly wish I could take a nice break from feeding him, but that obviously is something that can't be done! The other reason? I CAN'T WAIT FOR HIM TO WALK! I have been really patient but the anticipation of it happening is eating me alive! When he was 1.5 I used to think about wanting him to be walking by 2 by the summer, by the end of the summer, by the time school was starting!, but as 2.5 looms near I will be honest, it makes me more anxious for some reason. Not to mention, carrying TWO kids around that aren't so small anymore at the same time is really, really hard. The rational side of my brain tells myself all of the time that he will do it when he is ready and on the religious side, that obviously God has a plan for him and for us, but the side of me that comes from my heart, wants to crawl into bed and cry because I am just so frustrated.

I know, he will. He will eat independently. He will walk.

But on days like today, it's just one of those challenges that gets to me. I. want. to. know. when! So, I'll let it go with today and then start all over again tomorrow on a new day.

* Sigh *

Doctor's Office Fun

The other day when we were in the doctor's office for Kailey's 6 month checkup, we had some fun with Colin and Kailey to pass the time...

Please Watch

For anyone that may find themselves still saying the R word...please think about how it may affect someone living with Down Syndrome or other developmental disabilities. When you say something is "retarded", you are using a word that is hurtful to Colin and all of his friends. PLEASE, remind your friends and family members why they shouldn't use that word either...

This girl is spreading awareness for her brother, just as I am now spreading awareness against that word for Colin...

For more information, or take the pledge, please visit http://www.r-word.org/ for more information.

Spread the word to end the word.

Back to School Night

We had back to school night for Colin and Kailey tonight and I always enjoy going and listening to what the teachers say about what our kids' day is like. I have also enjoyed spending time with the parents as a lot of them have been the same since Colin was a newborn and the same ones who are having little babies in with Kailey now. While I do enjoy the night, I will admit that it's also tough for Chris and I.

Don't get me wrong, we have come a long way since the beginning when we really struggled with listening to the other parents talk about what their kids are doing. However, it's still tough to sit around the table and listen to how the kids come home and tell them about their day, about how they talk about the other kids in their class, who was crying, etc. Despite the fact that our kids are so similar when it comes to certain things, we do feel the gap between where their kids are developmentally and where Colin is.

It's such a weird feeling and I can't describe to you exactly what I am trying to say. When we are home with Colin, we exist in our bubble where he has come such a long way in terms of his communication and gross motor development. We are constantly celebrating the little milestones and rejoice in all of the great things that he IS doing. We don't notice the differences because there aren't other kids his age here. However, I was sitting at home spoon feeding him pasta tonight while other kids were feeding themselves whole DINNERS. Kids run circles around him, and we ask that the teachers make him walk laps on the playground with help. I sit there and swallow a lump as I listen to the other parents talk about the things their kids are doing and saying.

Believe me, I know that Colin will be doing all of these things, it just feels so strange to know that your child is even younger than some of the other kids and feels so far away from the things they are doing. It's just hard...

But, we are extremely happy that Colin and Kailey are where they are because we truly feel that it is best for them. When I hear about how structured Colin's day is, and the routines that they have each day, I feel confident that Colin is gaining skills necessary to help him transition to preschool in April (April!).

Let's Play Ball

Colin LOVES baseball....and soccer, and basketball, and football...and anything else out there. He LOVES sports. However, I think we have a baseball player in the making.

Me and My Buddy

When I picked Colin up from school today, I almost cried (well, I DID get teary eyed), but not for the reason you would expect. Colin is definitely transitioning must better now and Chris has said that he isn't crying much at all at drop-off. He is slowly starting to eat better and is finally drinking all of his smoothie that has his iron in it.

I was so happy to have witnessed such an ordinary moment today. Colin's class was playing outside when I got there and as I walked out the door and looked over, Colin and his buddy Tommy were "little boy rough-housing" and I could. have. died. It was the sweetest moment and I was so thankful to have seen it. I am getting teary eyed just typing this because it was so ordinary. Just two little boys playing together, having a great time with no care in the world. They certainly don't see the differences between each other and reminds me at how innocently children see the world. I think as adults we need to take some advice once in awhile.

As I started to walk closer, both Tommy and Colin saw me at the same time. Colin was so happy to see me and Tommy was excitedly patting Colin on the shoulder as if he were saying "look! yours is here!".

I am so thankful that Colin has such a great buddy and that Tommy has helped Colin transition back to school. I love seeing the two of them interact together and I can not wait for Colin to be walking so that it adds a whole new dynamic to their "rough-housing". Before they saw me, and just after rolling around, they got "up" and starting chasing each other. It was so sweet and I just love it.

Unfortunately, these two live in different towns, so they won't go through school together as they get older and out of daycare, but I can still see them remaining friends through the years. How cool would it be if one day when they are hanging out we can say that they have been friends since babies?

You two truly are adorable little buds!

Why I Plunge

Every year, people ask us all of the time how we can throw our bodies into freezing cold water in the middle of the winter in just a bathing suit. If you had asked me that question before Colin was born I would have told you that it was a crazy idea. I remember when my friend Zach did it for the first time; I thought HE was crazy.

We plunge simply because we love Colin. He has inspired us to raise money for an organization that he will one day be a part of (sooner than later!). When we volunteered for the Olympic Games this June, we felt like we were part of something larger than us. We were inspired. Everyone deserves a chance to shine and a stage to do so.

My dad wrote a blog piece for the Special Olympics of NJ blog titled "Why I Plunge". Please take a moment to read his post here... We are ALL inspired by what Colin has taught us, but has in a special way to my dad, Colin's Grandad, as well.

We are going for our 3rd year as a unified CAT Crew and would love for you to join us to make this our biggest and best year yet. We have raised around $70,000 in the past 2 years with around 50+ members each year! There are several ways you can help out:

The 2012 Special Olympics of NJ Polar Bear Plunge is going to take place on February 25, 2012 in Seaside Heights, NJ. Check out the Polar Bear plunge website here.

1. Join CAT Crew by clicking here! We would love to have you! Follow the link to join our team.

2. Donate to my page by clicking here!

3. We have lots of fundraising events available being hosted all of NJ.

- Appetizer Fundraiser at the Dubliner in Galloway, NJ on October 22nd from 1pm - 4pm

- Flapjack fundraiser at Applebees in Hamilton, NJ on January 21st from 8-10am

- Dining to Donate at the Applebees on November 9th from 5:30-9pm.

As always we thank you for all of your support!

Happy 6 Month Birthday Kailey!!

Our beautiful little girl is turning 6 months on Monday! Happy 6 month birthday Kailey!!

You have brought a whole new dynamic to our family and we love your easy-going nature, your spunkiness and the fact that you are the happiest little girl. You always make us smile with that big beautiful smile of yours. When you smile, your whole face smiles!

In the past 6 months you have changed so much, but one thing that has not changed is your love for your brother. You think he is the funniest best older brother ever, which is evident by the fact that you are constantly smiling and laughing at him.

You have been working pretty hard, despite the fact that you don't like your tummy a whole lot. You can get up on outstretched arms and you look like you are getting close to get onto your knees. You are constantly moving in your crib, on the floor, in your Johnny Jump Up and you make us laugh with your different positions you end up in.

You are so curious about everything. You make me giggle to watch you explore everything around you. You constantly love to touch our face, especially after you just took your fingers out of your mouth! You don't nap, which is tough because by 5:30pm, you start to get pretty cranky so we haven't figured out a good dinner routine with you yet. You may not nap, but you DO sleep 12-13 hours a night. You are eating foods now and seem to like everything except the green beans. You gagged and wretched at that one and started crying because you didn't want any more. Your reaction to peaches today was hysterical because you must have thought it was so tart!

Your first week at school has been a success and you are always happy when I come to get you. Transition has been going quite well with you! You like to talk a lot, and I'm HOPING for a mama first this time!

We love you so much Kailey girl and we will continue to enjoy every single moment with you. You bring so much to our family and we are blessed to have you there...

We love you beautiful! Happy 6 month birthday!!

A Pretty Pixel

We received the rest of our pictures from our Inspiration Through Art session, and I am thrilled with how beautiful they are. We have been so lucky to have been hooked up with Terry from A Pretty Pixel because she has been so kind and generous with her time and talent. Her work is amazing, so please take a moment to check out her website which is linked along the right hand side of the page (or through the name of her website above). Enjoy the pictures!

"Better Today"

At drop off today, Daddy sent me this picture and said things were "better today"...

...and, there was less crying today all day. As I told my students yesterday, one step at a time.

Reading in Bed

A negative of today? We are still having a rough time with Colin at school, but we just try to remind him how much we love him and of the fact that we will always be back to get him later in the day....

A positive of today? Despite the fact he barely ate lunch, gave his teachers a hard time, AND didn't want to eat dinner, he still sat with us at the dining room table and had some pasta without complaining too much initially (which he hasn't eaten in months).

Oh, and one more positive? After nights of Daddy having to work late, Colin finally got some play time AND snuggling time while reading books in bed...

* Our initial plan was to "quit" the crib cold turkey when the bed was delivered over a week ago, however, the mattress took another week, then a couple of days to get a bed set, and NOW we still haven't gotten the rails to put up on 2 sides...so, the crib it still is, but the bed is used for reading before bed *

Home

Well, today was the official first day of school, which meant that it was the start of the normal routine that we will be going through for the rest of the school year. I was hopeful that today was going to be a better day for Colin as he adjusted more to the changes in his life and heading back to school. I was even more hopeful when I got this picture from Daddy this morning that appeared as though Colin was enjoying his breakfast with his sister...

However, I received a text from Chris later that said that Colin still cried at drop off and sat by the wall because he didn't want him to leave. When I got to school to pick him up, his eyes were red as though he had been crying and his teacher told me that he had been crying off and on all day again. She said he played with his friend Tommy (thanks Tommy!) but was pretty quiet for the most part. She also said that after Chris left, he didn't want anyone and just wanted to sit there by himself. I know this is something we have to do and quite frankly we don't have a choice, BUT, it still breaks my heart that my little boy is so upset right now. I know it's an adjustment period, but I can picture the poor thing very quiet all day when he has been talkative at home these days. I can picture his sad little mopey face not showing a smile all day long and I hate it. But, I know it will get better. There will be smiles again...

What made it especially hard for me was the fact that when I got Colin into the car, he just kept saying home over and over again.

Kailey, on the other hand, had another great day and her teachers said that she was so happy again today. I can't describe to you how good it feels for me to walk in the room, say her name, and have her look at me and give me the biggest smile. Despite Colin's sadness, I get the same smile from him too and it just feels so good that they need me.

By the time that we got home, Colin was just happy to be home...

...there's no place like home right?

First Day of School

Thursday was Colin and Kailey's first day of school for the 2011-2012 school year. We were all up early and dressed to take pictures because I had to go to work pretty early. Kailey was excited that it was her very first day of school and that she got to use her new backpack to bring in all of her supplies (thanks Nana and Grandad!). She looked so pretty in her dress with matching headband and shoes (although she unfortunately did not make it to school in that dress because of a spit-up situation after I left).

Colin looked handsome as always in his new kicks and had no problem posing for our annual pictures. You would have thought from these pictures that he was so excited to go to school, but it ended up being a very baaad day.

When Chris got to school with them and dropped Colin off, he didn't stop crying. In fact, he sat at the door and cried while saying "no" as Chris left (heartbreaking, I know!). His teachers said that he was weepy all morning and was so tired at lunch time that he ate pretty well and went right to sleep at nap time (wish it were that easy at home!). When I got there to pick them up, he was crying again (apparently because someone took his Mickey) and pretty much cried off and on the rest of the night.

He has been "off" all weekend and I'm not sure if it has something to do with being "backed up" or teething (he won't let me look in there to find out). He has been very weepy all weekend and unlike Colin, wasn't interested much in socializing with those that he knows pretty well. Basically, he has been very cranky and emotional.

Kailey, however, had a great first day of school and enjoyed getting to know her new teachers. She already finger painted and loved it and when I got there to pick her up, she was playing on the floor and was very smiley. I know things will get better for Colin, but it's going to be another transition period for him getting used to being at school again.

Good luck to everyone on their new school years!!