Tuesday, March 21, 2017

World Down Syndrome Awareness Day 2017

Today on March 21st (3/21), we celebrate all of our loved ones who have 3 copies of the 21st chromosome in all cells of their body. It is caused by a random error during cell division called nondisjunction in which both copies of the 21st chromosome go to one cell instead of splitting into two cells. This error is then copied to all cells in the body.

When Colin was born, doctors highlighted all of the possible symptoms and effects that Colin could experience as a result of Down Syndrome. At the time, it was easy to get hung up on all of the possibilities of things that could go wrong or be different. However, what we have learned more than anything was that Colin wasn't just a statistic, number, "side effect" or even developmental delay; Colin was a little boy first and foremost and that still rings true today.

This boy that you see here today is happy, loving, observant, strong, independent, talented, funny, athletic, empathetic, and caring and he lives his life in a way that shows he just a boy not defined by limitations. He continues to make progress in all aspects of his life and so we celebrate all of his accomplishments, as many of them are a result of a lot of time, patience and very hard work on his behalf.

World Down Syndrome awareness day is a special day to spread understanding, acceptance and inclusion for people with Down Syndrome. They are more than a diagnosis; they are family members, loved ones and friends. See the possAbility!

Happy 3/21 day! Today we celebrate love and friendship, inclusion and respect for our special loved ones!

Sunday, March 12, 2017

Happy 6th Birthday Kailey!

Today our beautiful little girl turned 6 years old and we were left wondering how time moved this fast. We are so proud of her for all that she has become and accomplished over the past 6 years. She has added so much spunk and sass to our lives and we are so grateful for all of the ways she makes our hearts happy. She is smart and funny, nurturing (especially to Cody) and caring, helpful and loving. She is all girl in that she loves clothes, accessories, dolls, Barbies, and crafts but also loves soccer and dancing too. We love our Kailey girl so much!

Sunday, March 5, 2017

2017 Special Olympics NJ Polar Bear Plunge

Last Saturday, February 25th, was CAT Crew's 8th annual Special Olympics New Jersey Polar Bear Plunge.  It turned out to be a beautiful day as the sun was shining and the temperatures got close to 70 prior to plunge time (although I think it was slightly cooler right along the water). The water temperature was in the low 40s (that may have been a record for us for plunge temps!) and the atmosphere was charged with happiness and fun! CAT Crew was feeling particularly happy as we had 45 team members raising just over $44,000 contributing to the GRAND total of $1.9 million dollars!

Many of us spent the morning hanging out in a parking lot and enjoying each other's company with breakfast and games. The kids were especially good this year which made it that much more enjoyable.

Just prior to the plunge, we had been asked to participate in an interview by a Montclair student who was doing a project for her internship. She had come to our house the night before and then joined us the day of the plunge. Colin LOVED the spotlight and took his job very seriously.

This year we decided to let Colin and Kailey come on the beach with us (they usually head back to the house a bit earlier). Unfortunately, there were some speakers that were far louder than usual and it really upset Colin (and Kailey some too). If it weren't for that, I think he would have been really enjoying himself.

Words cannot express how thankful Chris and I are for all of these "team" members who support Colin and the rest of the Special Olympic athletes through raising money and then plunging with us. In addition, our team consists of so many people who have donated to the 45 team members that have allowed us to reach these totals. My heart is full of gratitude.

....and a special thanks to Jorie for capturing these moments!

Sunday, February 19, 2017

Special Olympics and Princeton Baseball

For the past two Sundays, Colin has participated in a clinic with Special Olympics NJ and Princeton University Baseball and has loved every minute. The athletes on the Princeton team were so great with all of the Special Olympic Athletes that participated. I was so happy to watch Colin because of how well he followed directions, stayed on task and did what was asked of him. I was reminded of how much Colin learns by observing; he has intently watched and is able to repeat mannerisms that are specific to positional players. He did such a great job and I was so proud of him!


Thank you to the Princeton University Baseball Team! You guys are awesome!

Thursday, January 12, 2017

The Struggle is Real

At my regular checkup this week at my OBGYN doctor, I had the midwife in the group who was at the hospital with us when Colin was born. No matter how much time has passed or the details that have filled my life since then, I can still remember everything vividly that transpired the day he was born. We spent some time discussing that day and how much has changed since then while looking through pictures of Colin, Kailey and Cody.

Throughout the pregnancy, Chris and I had prepared ourselves to be first time parents but were not prepared for all of the "extra" that would come with Colin's diagnosis of Down Syndrome. There has always been something to worry about and back then it was essentials of life; maintaining his body temperature, eating enough and ruling out any major health complications that he could have been born with. When we got through those humps, then it was worrying about developmental milestones like when he would track toys with his eyes, sit up, crawl, walk, play with toys appropriately, have enough communication to socialize, learn the alphabet and counting.

In the school years, we've been worrying about things like making sure he has appropriate behavior, constantly worrying about academics in all areas, potty training, keeping him involved in activities that are highly motivating, and the glaringly obvious stressor in educating Colin in an inclusive environment. We work through sensory issues, anxieties, physical challenges, minor health issues, and appropriate behavior on a daily basis. Being a parent of a child with special needs is different than being a parent to a child without; this I know because I am both. Since that first day, it has always been a steady stream of people giving us information about Colin that always leaves us feeling uncomfortable from doctors, nurses, therapists of all types, teachers, bus drivers, paraprofessionals, etc. Imagine what it would feel like to always be reminded of the daily struggle by highlighting the things that just aren't going perfectly. That in itself is stressful walking the line between what is a struggle due to Down Syndrome and what is him just being a 7 year old little boy. Chris and I can understand that this information is meant to be helpful but it is always a constant onslaught of "what  needs to be fixed".

Life with Colin is really challenging in that we work really hard to maintain and improve ALL aspects of his life. We want him to be the most independent and successful little person (and eventually big person!) that he can be. This can feel overwhelming at times because he needs a different kind of attention than Kailey and Cody need. There is always the communication with school and the time spent maintaining and practicing skills (homework and his extra practice takes a long time), problem solving on how to help the bus driver (he wants to be social but needs reminder on appropriate socialization/following rules), and our list goes on.

Identifying and talking about the struggle does not, however, diminish how rewarding our life is with Colin. We feed off of the positives we do get from all of those professionals I listed before and keep our eyes open to all of the ways in which we see Colin grow and make progress. There is nothing I love more than sitting with him each night and listening to him read. I am in awe each night that he is reading so well. Everyone that has helped Colin get to THIS point should be so proud of what they have helped him to accomplish.

He has come so far and Chris and I are so proud of him for how much progress he has made in life. He's not the little baby who struggled to drink 2 oz. of formula and keep his body temperature up all of those years ago but rather, a determined little boy who makes progress every no day no matter how big or small.

I thank God every day for giving us this gift; he's so worth the struggle to help him become the best he can be.

Sunday, January 8, 2017

Will You Plunge With Us?

February 25, 2017 will mark CAT Crew's 8th Special Olympics New Jersey Polar Bear Plunge in support of Colin and the thousands of other athletes that compete throughout the state. We can now officially say that we have raised over $300,000 since we began plunging and we are so proud of what our family and friends have accomplished.

Our friend Jorie created our team shortly after Colin was born and our success the very first year connected us to the then president and his wife who was running the Young Athlete Program. When Colin was two, he participated in his very first Young Athlete event despite the fact he wasn't quite walking yet. The program has played an integral part in Colin's social, emotional and skill development and we are so grateful for all of the connections we have made because of it.

This year, we are asking for help in raising money for Special Olympics New Jersey so that athletes like Colin can continue to train and compete in sports they love.

We would love to have YOU join our team! If the cold temps scare you, no need to worry because we are just as happy to have you a part of our team to help us (without actually going in the water)! All you have to do is raise $100 and in doing so, you earn cool incentives!

Event details:
Plunge date: February 25, 2017
Plunge time: 1pm
Location: Seaside Heights, NJ

To register for the plunge and join team CAT Crew, click HERE.
If it's really not your thing but you would still like to help support our efforts, then you can click HERE to go to my donation page and make a donation. ANY amount helps!

Please help us support our New Jersey Special Olympic Athletes!