Monday, January 31, 2011
Friday, January 28, 2011
It saddens me that our scientific research is leading us in a direction that is allowing us to create the perfect child by potentially removing a fetus that society would consider "imperfect". It's no secret that we are faced with daily challenges with Colin because of his having Down Syndrome, but the love and fullness I feel because of him outweighs any of these challenges. In fact, just tonight, when I was feeling a little "down" after having a rough day, Colin crawled over and kissed my cheek. I can assure you that he brightened numerous days in Shoprite today when he greeted and waved at many people there...please tell me how this life isn't a life worth living. Sure he is faced with challenges, but don't we all have some kind of burden or challenge that we struggle with on a regular basis?
My friend Patti at A Perfect Lily has been writing some posts on this issue and rallied together to the troops to put a beautiful video together. You can read the post in its entirety here which she appropriately titled "worthy of life" but I wanted to share this excerpt which moved me to tears...
"Our children are not suffering.
Our children are not a burden.
Our children are worthy of life and worthy of our love, and we are forever thankful for the incredible joy we know every single day....because of them. "
She created this video that beautifully demonstrates the worthiness of our children's lives...because they are all "so amazing"....Thanks Patti!
Since my format of the blog cuts off half of the video, I suggest checking it out on Patti's blog to see it in it's entiretly...If the video does not work the first time, please hit the refresh button...
Wednesday, January 26, 2011
However, the good thing is that there is always a bright spot in a day and sometimes you have to look harder than others for it. Of all the things that have been frustrating lately with feeding issues and a growing list for a toddler boy who is also teething (and just being a toddler boy), there have also been bright spots as well. For every thing that is frustrating in a day with Colin, there are plenty of other things that are exciting and rewarding.
Crawling on hands and knees isn't something that Chris and I have stressed out about because Colin has slowly been getting there. He has taken a "crawl" here and there and his amount of crawls and "steps" have been increasing. We witnessed his most consecutive hands and knees crawling yet tonight and although we didn't get all of it on camera, we are completely excited nonetheless.
Our other bright spot is that Colin's communication has been increasing and it seems like every day he is making a new sound or "saying" a new word. Most of the words he says are ones that most people wouldn't recognize, but we have begun to realize what he associates certain sounds with and that "vocabulary" of sounds is always growing.
So yes, every day IS challenging and frustrating. But, every day IS a new day and every day has plenty of rewarding moments as well...sometimes you just have to look for them!
Monday, January 24, 2011
Sunday, January 23, 2011
...standing up at the toilet splashing in the water. I wish I had a camera in that moment because it was so funny!
Saturday, January 22, 2011
Friday, January 21, 2011
Wednesday, January 19, 2011
So, as i started this post off with a quote, I know this is not the end of the road when it comes to feeding and we need to keep trudging along, but it IS our biggest challenge out there and is frustrating at times (ok, most of the time). However, as any good Mommy and Daddy would do, we just work hard to move forward.
Tuesday, January 18, 2011
As promised, here are 3 videos from swim lessons tonight!
Monday, January 17, 2011
This first video is of Colin getting stuck in the bench from his piano. I can tell you that this is not the first time this has happened, in fact, in may be the third or fourth. He likes knocking it over when he is not using it and then I guess he decides that he can crawl through the legs of the bench. However, this is usually what happens...
This second video is from today when Colin figured out that he could "tickle" daddy and get a good response...
I hope you all had a great and relaxing weekend!
* If any of you have any suggestions on reading material for children with DS who have feeding issues, texture issues, etc. I would appreciate any suggestions! I'm looking for some "help" in this department. Thanks! *
Friday, January 14, 2011
Just like all of us, Kelle and her family have grown to see the beauty in their little girl and have done something amazing with Nella's life journey...they started the ONEder fund in her honor. All of the proceeds from the ONEder fund go directly to the National Down Syndrome Society, an organization dedicated to the ..."value, acceptance, and inclusion of people with Down Syndrome.". In just four days, the Hampton family has raised over $50,000 for the NDSS! For more information on the ONEder fund, please visit Kelle Hampton's blog at Enjoying the Small Things . She is extremely talented with her words and her pictures and is doing something so great for Colin's community, so we thank you!
Kelle made a video to highlight this community of people and to raise awareness for her fund. I suggest grabbing some tissues before sitting down to watch! We are so proud to have Colin in this video!
Thursday, January 13, 2011
Tuesday, January 11, 2011
Monday, January 10, 2011
We are just as excited to take the dip this year and have started our fundraising efforts. This is the letter that we sent out to friends, family and coworkers...
It's that time of year again...time to jump in the Atlantic Ocean in February (*gasp*) for a wonderful cause! It's time for the Special Olympics' Polar Bear Plunge held in Seaside Heights, NJ on February 26, 2011! Last year, team CAT Crew raised over $38,000 in our first year ever in Colin's name.
As many of you know, our son Colin was diagnosed with Down Syndrome at birth. The polar bear plunge is our way of raising money in his honor for an organization that provides wonderful opportunities for children and adults with disabilities. The mission of the Special Olympics New Jersey is to provide year-round sports training and athletic competition in a variety of Olympic-type sports for children and adults with intellectual disabilities, giving them continuing opportunities to develop physical fitness, demonstrate courage, experience joy and participate in a sharing of gifts, skills and friendship with their families, other Special Olympics athletes and the community.
Colin works so hard on a daily basis to achieve skills and tasks that come easily to other children. He shows us every day the potential we all possess to accomplish goals, all with a smile on his face. We couldn't be more proud than to be parents for the most loving and special little boy.
Although I will not be able to fully plunge this year (I'm not so sure Colin's little brother or sister will appreciate the dip very much!), I will still be showing my support up to my thighs. If you are interested, there are several ways you can show your support for Colin...
1. Join our team, CAT Crew! By clicking on this link, you can join CAT Crew and help us to raise funds for such a great cause and take a dip in the ocean in February!
- Click "Join our team"
- Agree to the waiver
- Fill out the page to officially join CAT Crew.
2. Donate to CAT Crew by donating through my special page. By clicking on this link, you can donate to my fundraising page to show your support for Colin. If you are not comfortable donating online, there is an option to print out a form that you can mail in.
3. Cheer on team CAT Crew as we support Colin in February!
Thank you for all of your support that you have shown us so far. Colin, Chris and I look forward to having you join us!
Chris, Kelli, and Colin
If you are interested in donating or joining CAT Crew, please use the links above...we would love to have your support!!
We hope one day, Colin will be a proud participant of the Special Olympics. For more information on the Special Olympics of NJ, please click here.
Sunday, January 9, 2011
Unfortunately, we weren't off to a great foot when we walked into the room (it's a bubble) and there was a high school swim team practicing in the pool next to the kiddie pool. All of the sounds echoing in there was way overstimulating (if it was overstimulating for me, I can only imagine what it was like for Colin) and Colin started getting really nervous and clingy. I could not put him down without him holding on for dear life. He seemed to calm down a little bit, and so when Chris tried to get in the pool with him, I had high hopes. I can't say he exactly cried the whole time (and definitely didn't scream), but he had this horrible scared looked on his face the entire time and would not let go of Chris.
For day one I have a couple of theories:
1. Way too overstimulating in there for a kid who is sensitive to really loud noises.
2. The pool was not as warm as it was last year (hence the shivering).
3. I kept comparing it to the bath tub (thinking he would love it because he loves the bath), and I realized that in the bath tub, he is touching the bottom, which must feel really secure. In the pool, not so much.
4. He's a whole year older, new sights and sounds...
So, although I was extremely disappointed (I cried...but there is more to that I will get into another time), I am sure it will get better with time. I just hope it's before the last session!
Thursday, January 6, 2011
Wednesday, January 5, 2011
On Christmas Eve, Miss Kathy came over for PT since we weren't doing much in the morning and she was going to be traveling the following week. We started talking about Colin's improvements towards walking, and I was asking her how she thought it was going, since he really hasn't shown any signs of it other than his length of time that has increased for standing. She was hesitant at first thinking that I would be upset to hear a negative response, but I honestly take the good with the bad these days when it comes to development. I know he will one day when the time is right, but I still am curious to know what his progress is like. She said that since he wasn't making any "cruising" type motions or side stepping while standing, it was probably going to be awhile. I have been happy lately that Colin will attempt to pull to stand more and his length of time standing has increased, so I am certainly not focused or driven by walking just yet. It would be nice, believe me, but again...when the time is right.
Today, Chris was texting me during PT telling me what a great session Colin was having. Of course, I tend to get jealous in these moments, but being the great guy that he is, gets video and pictures for me. So, although this video is a bit long...check out our little boy rocking it and taking his first "side steps"!! I was so proud watching this video when I got home, and the cutest thing was, I was lying on the floor watching it on the camera and Colin came right over and proppped himself up next to me and was giggling and smiling at me. I guess he could tell from the tears in my eyes how happy I was! Look at the cute dancing as well!
I've made a few attempts to get Colin's new (and my favorite sign) on camera lately, but haven't gotten anything very good. Here is a short video of Colin 1st kissing his reflection and then saying "love you" with signing...
And finally, my typical toddler boy, playing with the toilet seat...
Tuesday, January 4, 2011
Monday, January 3, 2011
Well, this angel managed to swipe away his Little People nativity scene (do you see poor Joseph poking out from underneath the couch? Unfortunately, that's where baby Jesus and the rest of the gang are hiding.) and knock some of my Christmas ornaments off of the next shelf...