Monday, December 31, 2018

Our 2018 in Review

It's hard to believe that 2018 is coming to a close today. I greatly enjoyed looking back over the year in photos and seeing all of the fun we had with family and friends. The photos certainly don't reflect all of the moments this year that were tough but they are just as important as all of the fun times. 

Here's a very abridged version of our 2018!

"Make it Sweet" by Old Dominion

Thursday, December 27, 2018

Tis' the Season to Be Joyful (..and Stressed)

There is a lot to reflect on tonight as I'm sitting here looking at a messy house (all for good reasons), the twinkling of Christmas lights, and looking through lots of pictures that show a happy family enjoying this holiday season. It feels like the time from Thanksgiving to today passed in the blink of an eye. If I'm being perfectly honest, I feel a little of those post-holiday blues which is a little mixture of happiness from enjoying it all, sadness it's all over, and also a little anxiousness to return to a clean/organized house and normal routines. I am so thankful for time spent with family, the many wonderful things we were able to do, and the generosity of so many this holiday season. 

The hardest thing about this holiday was the stress/anxiety that Colin felt (which then of course was how I felt). He has felt this way for years and we are pretty confident that it all has to do with the disruption of normal routines (despite being really excited) and discomfort with so many "unknowns". In years past, the anxiety started at least a week before and he had a lot of difficulty with many of the holiday activities that we did. However, this year, he did so much better with the weeks leading up but it all started to fall apart the day before Christmas Eve. Christmas Eve and Christmas day were really rough and only today was he starting to act a little more like himself. To others it may have just appeared as though he was "grumpy" and not behaving well but to us, he was visibly uncomfortable and this was made worse by a new behavior of licking/rubbing his lips and face. He literally rubbed/licked it raw (I read an article on "lip licker's dermatitis" which in many kids is the result of stress/anxiety) and that increased his discomfort. It was a really stressful few days more so because it has been so hard to see him so upset and not be able to do anything to relieve that discomfort. He continuously asks when all of the decorations are coming down and at this point I think it will be this weekend!

His lip was so red, chapped and swollen!
The holiday season started out with a visit to Santa (the first of several) at the kids' Karate school and Colin was so excited to share what he was really hoping for from Santa (Broadway tickets to see Aladdin). This was the first year everyone was really excited and there were no tears!

Everyone was so excited and ready for the holidays to come that we had the decorations up the day after Thanksgiving with our new fake tree for the family room followed by the real tree not too long after in the front living room. However, due to a week of illness (2 with the flu, 1 with strep/cold) it took awhile for the trees to actually get decorated. The kids were asking every day when we would finally get to decorate and were so happy once everyone was healthy enough to do so (as was I!). 

We spent the month doing a lot of fun holiday activities like going to see the Grinch in the movies, 

ran in the Jingle all the Way race together as a family in support of Special Olympics New Jersey

spent a night getting pizza, visiting the mall, and driving around to look at Christmas lights, 

snuggling on the couch watching Christmas movies, 

visiting Sesame place for their Christmas events, 

attending the Old Fashioned Christmas event at Allaire Community Farm

lighting the Advent Candle together as a family at our church with the holiday celebration, 

and Chris and I even made it out to a New Jersey Devils' game to celebrate Team NJ's attendance and successes at the Special Olympics USA games this past summer. 

The kids were fortunate to have some fun holiday celebrations at school and I was lucky to get to attend Cody's this year (last year in daycare!).

By the time the holidays arrived, we had spent some time talking about holiday etiquette in terms of using manners with gift receiving, visiting different houses, etc. but there are always so many variables that come into play like excitement, late nights, (stress/anxiety with Colin), etc. This always makes it a little tough (and a little stressful for me), but it's hard to contain all of that excitement surrounding the magic of Christmas and little kids. We spent Christmas Eve with Chris' family (after first spreading the reindeer food)...

...and then Christmas day with my family. There is nothing like the magic of kids and Christmas morning after a visit from Santa, the squeals of "thank you Santa!" and all of the smiles on their faces. 

Colin received his long awaited Broadway tickets for Aladdin (and Santa didn't take into account how long the wait until February actually was...) and was so excited! 

It was an amazing holiday season and we truly have been blessed! 

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!