Spread the Word

Throughout my entire life, I have always been one of those people who have been very emotional, over everything....good things, bad things, and all of the in between things. In fact, [warning...embarrassing story] when I was younger and my family and I were all hanging out in the living room one night, a fart slipped out. Of course everyone laughed because it was silly and funny, but I ran to my room crying because I was embarrassed and that emotional.

I truly feel great moments like weddings, accomplishments, soldiers coming home stories, babies being born, love stories and so on and feel and hurt over the not so good moments (I don't even have to list those). I was so happy when Colin was born because my baby was finally here and then came all of the stuff that at first I thought were not so good. I have never cried more in my entire life than I did when I found out that Colin had Down Syndrome. Obviously. We've all been there. However, with time, I slowly realized through the tears that it was actually a blessing in disguise. Once I realized that, I couldn't be more thankful for Colin.

I thought I was emotional before he was born? Man, these days you can find tears streaming down my face at SOME point in the day every. single. day because I feel happy or sad or just read something touching, or witnessed a proud moment, etc. I am so thankful for Colin because he has brought so much to my life with Chris that I never thought was possible. I think all of the time about the fact that if it were not for Colin, I would never have been so lucky to find my blog friends out there (love you guys!) whose lives have become so integrated in my own that I can't wait to hear about what your kids have been up to. Seriously, Chris makes fun of me at night because he loses me for a little bit so I can get caught up on whats been going on with your kids! I am thankful for therapists and doctors who are extra special because of the love and gentleness they show with Colin. I am thankful to belong to a new community that I would have never even known existed if it weren't for Colin.

Of course, there are lots of challenges and setbacks and hard times mixed in there too that are certainly NOT always easy. I have cried and been emotional becomes sometimes things are just so frustrating...we may think this journey is a blessing, but never said it was an easy one!

Like when someone uses the R word. Oh how this hurts me and makes me cringe. I have tried really hard to spread awareness about the use of this word but it's not always easy. However, I stumbled across this article today and I was amazed (and teary!) over how the efforts of 2 college students can cause a little seedling to grow into something big and amazing!!

I'm sure you have all heard about the campaign "Spread the Word to the End the Word" and may have even been to their website. During the Down Syndrome awareness month, I was even referring people to that website to make their pledge to end the use of the word. However, I never even knew how the campaign got started!

The National Down Syndrome Congress had this article posted on their facebook page about Kari Jo Johnson's love for her brother, who has Down Syndrome. One day, she decided to set up a table in the student union of her college to spread awareness how the use of the R word can be very hurtful for people like her brother who have intellectual disabilities. She recruited another student, John Busch whose brother also has Down Syndrome and their campaign grew and grew to become what it is today...the "Spread the Word to End the Word" campaign!

Wow, simply amazing.

Read the article by clicking here.

You can also watch their original public service announcement, which they used on their campus as a way to also spread awareness.

Great Article

* I checked the link after previously putting this post up and fixed it so it should be working now *

One of the networks that I belong to send out this great article...It was so well done and left me a little teary eyed for very good reasons...

...take a look yourself! :)

Click here for the article.

Live - Laugh - Love

I couldn't think of a good title for this post because my mind is all over the place in so many ways with so many things. However, as I was looking at some of the pictures and videos I wanted to add, this popular saying popped into my head.

Life certainly isn't going to be easy to get through if you don't laugh a little and love a lot..

When I came across this picture, my heart actually skipped my beat because I just love my family. We certainly have had our share of challenges, but it's ok because we have each other...

We are also very lucky to have so many close friends, especially the Gallagher family! We have been lucky to have them in our lives and I just know our kids are going to grow up as close buddies!!

And, today is Zach's birthday!...Happy Birthday Zach!! :)
We love you guys!!

To end on a video, Colin loves Mickey Mouse Clubhouse. When I say loves, I mean gets so excited I don't even know what he is doing! It's a cross between "hooray and yay!" but so cute! In the video, you'll see him just watching intently about half way through and then he will start getting really excited again.

Thank You!

I would like to thank Adrienne again at Our Unexpected Journey for our awesome new header!! It gives me the biggest smile when the page opens up!

Thanks Adrienne!

Also, check out her other blog at Lil' Sis Designs! She is so creative in many ways!



The best part? A percentage of the proceeds go to Down Syndrome research! How cool is that?

It's a Beautiful Day!

June is always a good time in my house...Chris and I come off of a long school year with lots of craziness running around from game to game, working weekends, and having to make the most of our small amount of time together. This year has been especially busy with my student teaching in the fall to finish my Masters degree and working full time, packing to move, and actually moving twice (we're halfway there!).

June is our transition time into the summer and we always enjoy it. Work is lighter and more flexible and we can actually do things together after work like normal people do!

Today, Colin and I walked down the street to the bay beach that also has a park too! We waited for Daddy to meet us there so that we could spend a little bit of time together before dinner. We had so much fun!!
Colin and I spent a little bit of time on the beach at first and in this video you can see Colin saying his favorite word to say..."hi!". You can also see him taking off his least favorite article of clothing, his hat!

Colin loves inspecting the sand, picking it up and dropping it out of his hand. I can't get him to self-feed with food, yet, I caught him picking up a pile of sand and putting it in his mouth! Go figure! He is so curious about everything going on around him.

After Daddy got to the park, we went on the swings! Colin LOVES the swing and we get some of the happiest smiles out of him while he feels the wind on his face!

Memorial Day

It has become tradition over the past few years that we spend Memorial Day with my parents at the beach. The beach is a very special place to me and one that my parents got me to love by bringing me to the beach at 2 months old!

Colin followed suit when he was only 1 month old!

Last year was fun, but as a newborn, he had some difficulties with the breezes..they took his lil' breath away!

This year looks like it's going to be a fun one...he had such a great time and so did we!

Click here to view these pictures larger

The Children's Hospital of Philadelphia

Last week we drove out to the Children's Hospital of Philadelphia for an assessment with the Trisomy 21 program. When Colin was just a newborn, we had debated whether or not we should go for an assessment since we were already involved in the ITAP (Infant Toddler Assessment Program) at our local children's hospital. As many of you have read, we have not been happy with this program and so we were looking to see what else was out there.

We HAVE come a long way because back in the beginning, I used to think that we needed to be inolved in everything possible because it was what Colin needed. However, I have slowly learned over time that we already know what Colin needs and we continue to do those things on a daily basis. We don't necessarily need to be enrolled in every single program for Colin to do well...he is doing so great already with our EI team! However, I was still interested to check out this program and this post is an account of our experience...

...which was a GREAT one!

I don't want this to sound superficial, but appearances when it comes to places that are providing medical care and the like, do mean a lot to me. The rooms were so nice and clean and updated and the staff was so friendly and helpful along every step of the way.

We arrived early and were taken to the back very quickly (which was almost too quickly for us since Colin hadn't even finished his breakfast yet!). In the 1st room, Colin's vitals were taken as well as some measurements that are pretty standard for any doctor visit. The woman was so friendly to Colin, which also was so important to us. When she was finished, we waited for a short time for the developmental pediatrician, Tahira G. Adelekan to arrive.

Colin was such a good boy and in such a great mood throughout the entire visit!

When Dr. Adelekan walked in she immediately went right over to Colin and said hi and talked to him. She was so easy going which allowed us to relax and feel comfortable with her. She loved Colin and his reaction to her was the same.

She performed some of the "testing" that we have already seen before, but this time, Colin got to sit independently at his own table!

As you can tell, he was so happy..."look, my own table just my size!" He didn't show her everything that he could do, but it was ok because he was enjoying himself! What we loved about Dr. Adelekan was that she was so incredibly positive about the things that Colin COULD do and spoke less about the things he wasn't quite doing yet.

That in itself is so important for Chris and I. I couldn't help but smile and just feel proud of Colin because everything in that room was so positive. It makes a huge difference! After the "testing", a physical therapist came in and discussed with us the things that we were working on with Colin. She was so happy to hear all of the work he was doing, and didn't even need to do an assessment herself. Throughout the entire visit, Colin was very social and happy and I'm sure it was because of the comfort level in the room!

The recommendation was to follow up every 6 months so that they can continue to monitor his development in all areas. This also includes keeping on track with the check-ups with some of the specialists, blood work, etc. We plan to continue doing this and now we are officially done with the other program.

Afterwards, we went upstairs and met with some researchers who are conducting a study through CHOP that will eventually be used to change the growth charts for individuals with Down Syndrome. You can read an article about this study by clicking here. We are happy to be involved and our involvement is actually quite minimal. Every 6 months, Colin will have several measurements taken including height, weight, head circumference, spine length, body fat assessment, etc. These measurements will be used to change the charts in the future.

To finish our day, we went to my high school softball game for the state sectional group III championship. It was closer to Philadelphia than it was to my school so I went to be supportive and be there in case there were any injuries. Unfortunately, we lost, but Colin had fun!

He was such a good boy playing with his toys while Daddy did some work...

His favorite thing was watching the girls warm up before the game!

They had the best view of the game!