Monday, October 29, 2018

Down Syndrome Awareness Month

As we are nearing the end of October, we are also nearing the end of Down Syndrome Awareness month and I've been uncharacteristically quiet this month.  There have been so many times that I have sat down to attempt and write a blog post or two, but as time has gone by I feel like I have a serious case of writers block (evident by the lengthy time that goes in between blog posts these days). When I try and figure out why it's become so hard I think the answer really lies in the fact that life is so much "easier" these days when it comes to raising Colin. 


Colin is now a 9 year old 3rd grader and he is very much like any other typical boy. He loves all things sports, singing/dancing (especially those songs that go along with a "show"), being outdoors and riding bikes/scooters (this is becoming a tad easier), reading, playing with friends, swimming, visiting Sesame Place, watching live shows/performances, and being with those he loves the most. He thrives the best under regular routines that are structured because he feels most comfortable when he can anticipate what is coming next. He is extremely polite and well mannered and will confidently greet those around him, even if it means he needs to introduce himself. He is completely comfortable to chat with those he doesn't know as well and will ask plenty of questions so that he better understands the world around him. He is currently being educated in a general education class with appropriate supports and is thriving in this environment. We are so grateful for his school community; there is so much support from the staff and from his peers (and from those people we are grateful to call his friends). 


Throughout a lot of the past 9 years, there were certain things that were so much more challenging than others and they always seemed to be at the forefront. Some of the top challenges we had faced were toileting, feeding, his education, and handling different behaviors. We seemed to have gone through "phases" that felt like there was no end in sight and then with consistency, help from teachers/therapists, as well as other professionals we got to a point where we looked back and all of a sudden those things seemed to be so much easier or a "thing of the past". Those things were easier to talk about on the blog because they were the "tough stuff", the things we needed to "vent" about it because they were hard


I think what makes it harder to blog now is that although we are raising a child with Down Syndrome, life is just "normal" and dare I say, "easy". The things that seemed so hard to get through at one time just seem like challenges we all had to work hard to overcome. Looking back, we see the struggles, but also see how far we've all been able to come. Admittedly, "easy" is still a loose term because we all know that raising ANY child has its challenges, but we really feel that the challenges we face with Colin are our norm for him; this is much the same with Kailey being a 7 year old girl and Cody being a typical 4 year old boy. 


I think I can best describe our family as a "happy mess" because nothing is perfect around here but we survive day to day doing the very best we can. We are happy, healthy and enjoying each other and that's all you can really ask for. In all reality, what actually spurred me finally sitting down to blog tonight was that tonight didn't go so smoothly with Colin and left me feeling a little frustrated/emotional. Minor little challenges that can sometimes add up to a rough evening still describes a pretty typical family life. Our "normal" looks a little different than the "normal" of another family, but that's what makes us all unique. 


There is no doubt that knowing what I now know, that I would choose any other life for myself and I certainly would not choose any child to replace the perfect child that I have in Colin. In the minutes, hours and days that followed Colin's birth, I was so scared and couldn't help but think, "why me/why us?" (something I'm not exactly proud of us a Mom). There is no way I could ever articulate just how thankful I am that I was given this child to love because there is no way I could love the same without him.

Sunday, September 16, 2018

Back to School

This weekend marked the end of the first two weeks back to school and overall we have had a pretty smooth transition into the new school year. The kids have been happy to be back to school and all love their new teachers this year. The most difficult part of being back to school is not really school itself but all of the after school activities that has us running from one place to another. The first two weeks felt a little "clumsy" in figuring out the logistics of eating, homework, activities, showers, reading, bedtime, etc. but we're slowly getting back into a comfortable groove. The kids seem really happy with the predictable routines and are really showing how much they are growing and maturing with handling the transition really well. 










I can remember in years past writing blog posts about how Colin has had difficulty with the transition and other than some little minor things that only we probably notice as parents, he's handling it all with ease. He really does love school and his team of people who work with him. Homework started this past week and other than a few groans here and there, he really has been very compliant with getting it done. 


Colin and Kailey are playing soccer this fall and are enjoying it so far. Kailey is playing on a team this year that is playing other towns in the county. She's really been enjoying the girls she's playing with and just had her first game this weekend. Colin is also on a new team this year and just like everything else, there will be a little bit of a learning curve as he transitions to playing with a coach and new teammates. He loves playing and we know that as the season goes on, all of the little nuances we've noticed so far will get better. 




Cody has been a great little sibling and supporting his brother and sister at all of their activities. The excitement for him this week was in celebrating his birthday. He has been so happy at school with his new teacher and we can't wait to see all of the ways he is going to grow this year! 



We are thankful for the smooth transition so far and hope it stays that way! 

Wednesday, September 12, 2018

Happy 4th Birthday Cody!

Today our baby boy turns 4 and we are so happy to celebrate this guy and all of the joy that he brings to our lives. As the song in his montage video states "it's a better place since you came along" and that couldn't be more true. What makes this birthday a little bit more emotional for me is the fact that not only is he another year older in age and further from the little baby he once was but all of a sudden it seems as if he has taken a big leap and looks and acts so much older! I know that doesn't sound so grammatically correct BUT he has been maturing and changing so much in the past few months. Cody has not always been our easiest child to raise in that he is a fiercely independent and headstrong little boy but for all of the things that have been challenging, there is so much more that we just love about him. He's got such a funny personality, he loves to learn and has always been trying his hardest to keep up with Colin and Kailey. He loves Paw Patrol, building towers with blocks, "doggies", and horses. He just started his last year of pre-K and loves going to school. We can't wait to see all of the things this next year is going to bring! Happy Birthday Cody! We all love you so much! 






Saturday, September 8, 2018

Summer 2018


This summer honestly goes down in our family's books as one of the best! It was the first summer that our kids were more able to be "on the go", stay up later to be out and about doing things, and generally have really great behavior. Things did get a little hairy the last week and a half of summer, but that's always to be expected (and the great thing is that it happened MUCH later this summer!). We had some really fun adventures this summer with family and friends and greatly enjoyed our time together! When I look back through all of the pictures we've taken, it's amazing to see all of the things we fit in over the past few months. I'm really sad to see it go, but I think we're all happy here to be back in a "comfortable" routine again. 

It was fun looking back at all of the pictures and I'm disappointed I couldn't fit ALL of the pictures in! So long summer 2018, it sure was great!

Tuesday, July 24, 2018

First Half Summer Recap 2018

By this point every summer, I've often already written a blog post about how much transition we experienced moving from our routined school year into the unknown of the summer. As much as we all love summer in this house, it's often been difficult to get through the end of June as we have to get used to a "new" way of doing things again. I've often typically talked about Colin and his difficulties with a lack of a regular routine and how we have to make our way to a place that he is comfortable and happy before we can really start enjoying the summer. However, as I started thinking about our summer so far and where we are right now, I've realized that this summer has had one of the most seamless transitions in most of the years that I can remember. It has most certainly had its challenging moments but I have realized that we walked right from the end of school into many adventures and a day to day existence in which everyone is happy, enjoying themselves and comfortable with the way things are. As I have scrolled through many of my pictures through today, I know that we have been very lucky to have done the things we have as a family as well as with family and friends. I also have to say how proud we are of Colin because as he continues to grow and mature, we have seen so many wonderful changes that includes this summer and his resilience to change. We have seen how he's tackled many difficult challenges like fireworks, trying new foods, riding his bike, getting his teeth cleaned, etc. and although he isn't always happy with the outcome, is still pushing through to do the best he can do. Here are some of my favorites so far and I look forward to all that is still yet to come! 

Colin and Kailey's Dance Recital

Colin and Kailey's Dance Recital

1 of Many Beach Days

1 of Many Beach Days

So proud of this guy! 

Adventures to the bay

Playground Fun

Playground Fun

Fun Sibling Moments

Boardwalk Fun

Boardwalk Fun

Boardwalk Fun

We've Managed to Fix SOME Bedtime Routines (NOT all)

Surviving Days without Daddy Time

Surviving Days without Daddy Time with Adventures

Surviving Days without Daddy Time with Adventures (NC)

Surviving Days without Daddy Time with Adventures (NC)

Surviving a 9 Hour Trip Home from NC


Welcoming Daddy and Team NJ home from USA Games at the Airport


Kids are in Bed Fun

Beach Fun

Yay, Colin survived the fireworks! (A HUGE fear)

Cody being Cody

Enjoying some perfect 10 beach days

"Dancing in the Rain" 

Thursday, June 21, 2018

The end of the 2017-2018 School Year

This week marked the end of the 2017-2018 school year and as I expected, it brought with it a lot of emotions for me. We are finishing up a truly phenomenal year and I am just so thankful for the truly amazing educators that all three of our kids were lucky to have worked with this year. It feels like just yesterday we were sending them all off with the hopes that they would have great years and they all exceeded our expectations. 



This was the BEST year we have had with Colin to date. Much like it is every time you go through something difficult in life, it is hard to imagine what it's like to be on the flipside. This year was the first year that there was not any litigation or difficult IEP meeting and for the most part, it was just a normal school year. In a meeting at the end of last school year, Colin's current general education teacher and I sat down to meet each other and talk about 2nd grade and she said to me "don't worry, I've got this" and she really did get it. She was the definition of inclusion in all of the ways she seamlessly made sure Colin was a part of all classroom activities and although we communicated throughout the school year when it was needed, it wasn't really needed a whole lot. Between Colin's general education teacher, special education teacher, and his paraprofessional (all women we are so incredibly grateful for), he made meaningful progress and was so incredibly happy. When I saw all 3 women on the last day of school, I couldn't help but cry with gratitude for all they did for Colin this year. 

First Day of School

Last Day of School

Last Day of School
Kailey had a great year as well. She really enjoyed her teacher and her class and made a lot of academic growth this year. She loves learning and took her homework very seriously this year (almost to a fault!). We watched her reading, and confidence in reading, take off as the year progressed as well as her writing. Although her spelling isn't always the best, she loves to write and we find her written notes all throughout the house. She is also very talented when it comes to drawing and particularly loves to draw unicorns and princesses. She is a far better artist then I can possibly manage! There are most times when she is the most doting, sweet, and loving sister but there are also times when her brothers pester her and she has little patience. We've been working really hard this year on the whining but I'm not sure that ever changes! Since this time last year, she has grown 3 1/4 inches and gained 8lbs (although I'm pretty sure the 8lbs must just be in her bones!). We were really proud of all that she was able to accomplish this year! 

1st Day of School

Last Day of School

Last Day of School
Cody made so many big changes this year although the growth happened very slowly. At the start of the year, the most difficult challenges we faced with him were the tantrums over every little thing. We have always felt that part of Cody's difficulties were due in part in trying to keep up with Colin and Kailey. While many times it seemed like he was older than his 3 years of age, he was only 3 and we were reminded of it in the ways he handled many things, especially when things didn't go the way he wanted or expected them to. We have felt that 3 has been VERY difficult, however, throughout this spring we have really started to see his maturity and ability to handle things far better when they don't go his way. The tantrums and lack of flexibility often come as a result of tiredness, lack of nap, or after a long weekend and/or busy few days in a row. He is otherwise, a very happy little boy who loves all things sports and Paw Patrol. After seeing all of the positive changes this spring, we can't wait to see what 4 will bring for him! 

1st Day of School

Last Day of School
The 2017-2018 really was a FANTASTIC school year and we are so very grateful to the wonderful educators all of our kids were blessed to be with this year!

1st Day of School

Last Day of School