31 for 21 Day 30: Life

I pulled away from Colin's school today with a (happy) tear in my eye grateful for having the opportunity to watch him at his parade (Chris was with the other 2). The first time around the field I could see him looking for me and when he finally found me, his eyes and face lit up. The second time around, I could see he was a little upset/unsure/wanting to come over and see me. He kept looking at his para with a smile like "that's my mommy" and then he came running over to hug me. He had the biggest smile and said "mommy! You came to see me!". I sent him back to the line and he went right back where he was supposed to. 

As Down Syndrome awareness month is coming to a close, I hope that my message has been pretty clear; in most ways, we are a typical family of 5 that has lots of great moments, but some really challenging ones too. While I truly believe Colin would not be who he is today if he didn't have Down Syndrome (and I am thankful for that), I also have my moments where I am frustrated and discouraged over the things that are harder for him because of it. Chris and I were always told that we were given Colin because we were "special people" or because "God didn't give us more than we could handle". I'm not sure this is entirely true; I believe that our family is who we are because we have grown and been changed through each great moment and especially through each challenge too. I don't think I was particularly strong or special before, but I know that I  am not the same person now. Through each moment in life, I continue to grow and change and bend to what comes our way.

 

This is life for us, our life, and I wouldn't change a thing about it (well, I wouldn't mind getting a little bit more sleep...).

31 for 21 Day 29: School Photo

Colin's 2015-2016 school year photo. I am smitten with this little man of mine.  

 

31 for 21 Day 28: Lost Tooth

When Colin started getting teeth, they were very delayed in their arrival and they did not come through in the order in which was typical for most kids. In addition, Colin's teeth are actually shorter and pointier than most (although the pointiness is much better now that eats more variety of foods). Last year, when I started hearing that other 5 year olds were starting to lose teeth I kind of tucked it in the back of my mind because Colin hadn't shown any signs of it and I knew that it would probably be delayed as well.

 

A couple of weeks ago, on a whim, I decided to see if Colin would let me check his mouth and low and behold, I noticed one on the bottom teeth was loose. We started talking about it a lot with him so he knew what to expect and what could happen with the tooth. Every once in awhile, I have checked it but it hadn't seemed to get any looser. Yesterday, Colin had feeding therapy and had the tooth when we went in and the when we came out. We got in the car and drove to the pizza place and when we were getting out, I noticed that there was a gap in his teeth. I can't find the tooth anywhere! The only thing I can think happened was that Kailey accidentally pulled it; they were playing with rubber gloves from therapy and pretending to check each others loose teeth. I'm thinking she must have accidentally hooked on it and pulled it. He seems to think the tooth fairy took it out of his mouth! 

 

It was a fun milestone!

31 for 21 Day 27: Feeling Proud

Last night when I was sitting with Colin while he was doing his homework (completely independently) I was just overcome with emotion thinking about how proud I am of him. He has grown and changed so much lately and is turning into this independent and confident little guy. I am just so lucky I get to be his Mommy...

 

31 for 21 Day 26: The Journey

"Life is not a race. Find joy in the journey."

 

31 for 21 Day 25: Blogging

I have always been a person that cannot hold anything in for very long, good or bad. I feel better when I talk about things and get them off of my chest. When Colin was born and his diagnosis later confirmed, I immediately started doing research online about Down Syndrome. The greatest information I got was not from any specific website, but rather, by reading the blogs written by people who had children with Down Syndrome. It sparked an interest in me and so shortly after, Love for Colin was born. 

 

The day I created the blog, I thought it was going to be an outlet for me with the purpose of venting about Colin having Down Syndrome. While that does happen on occasion, it ended up becoming a place to share our journey with family and friends and then eventually, with people I had never met before. There have been times when I have been questioned for putting so much out there about our family and I'll admit that there are times that maybe I've shared too much but I am admittedly happy with sharing what I do for a couple of reasons.

 

#1 It feels good to share (there is something very therapeutic about sharing the good, the bad and everything else in between).

#2 I spread awareness about Down Syndrome.

#3 (and most importantly) I hope that this blog reaches those that need it most just like so many blogs did for me. I hope that someone that sits down to their computer for the first time after receiving a diagnosis of Down Syndrome, stumbles upon Love for Colin and gets a glimpse of our life with Colin. I hope that just maybe, this blog would take away a little bit of the fear that they are feeling and replace it with hope as they start their journey. My life is better because of Colin...

31 for 21 Day 24: Family

"Where life begins and love never ends...Family."

 

31 for 21 Day 23: ENT and surgery

When Colin was born, we were given a list of potential health problems that can occur in children with Down Syndrome and developmental timelines in which we should be getting evaluations done. The first major specialist that we needed to see ON the day Colin was born was the cardiologist and then for follow up visits in his office. Many children with Down Syndrome have heart defects that need to be corrected; fortunately, despite the fact his heart rate was very low and not coming back up just prior to delivery, his heart was completely healthy. Over the past 6 years, we have seen and/or continue to see a gastroenterologist (digestive), ENT (ear nose and throat), audiologist (hearing), endocrinologist (hormones), hematologist (blood), ophthalmologist (eye), urologist and various developmental pediatricians.  In addition, he has had many tests done to rule out various health conditions including many, many blood tests, cervical x-rays, hearing tests, urine/stool tests, and various other minor tests. We are so thankful that most of our visits to these doctors have been checkups or monitoring and not because of any significant health concerns.

 

Colin was due for his yearly checkup with the ENT and audiologist and we were also feeling a little bit more urgent about seeing them because Colin has been exhibiting some symptoms and behaviors that we weren't sure if they were structural/functional or just behavioral.  We can't pinpoint exactly when it started but it has been very noticeable that in the past month Colin will often cover his ears and say it's too loud, and even cry, in certain situations. It wasn't consistently just loud environments (which he has always been able to tolerate). In addition, he has been asking us to repeat what we say (especially in the car when his left ear is facing us), and he has occasionally complained about his ear bothering him (not as often). In addition, he gets up several times a night even though he goes right back to sleep when we lay with him (we didn't necessarily connect that until today). The doctor has been monitoring his tonsils for years now because they are more enlarged than typical children and his passageways (ears, nose, throat) are smaller than most.

Today we found out that his tonsils are so enlarged that they are preventing fluid from properly draining from his ears causing a buildup, especially in his left ear. This is more than likely causing his sound sensitivity and the fact he is not sleeping well at night. He's probably been really uncomfortable and we didn't even know. As a result, he needs to have his tonsils and adenoids out as well as have the fluid drained from his left ear. This needs to be done sooner than later because it could set off a chain reaction of other problems.  

 

It was a double edged sword hearing the information today because I am happy we have answers and a solution that will give him relief and an improvement in his hearing, but I am really bummed that he has to have surgery in order to get that solution (even though I did always know this would be a possibility). We are working to schedule it over Christmas break to minimize the amount of time he has to be out of school for. Hoping the surgery will go as smoothly as possible!

31 for 21 Day 22: Growing up



I have been watching my little boy lately with this quiet contentment because of how much he has changed in the past 6 months. I see his growth in so many ways and I am so proud of how far he has come. All of a sudden I noticed the changes in the potty department (it's been weeks since he has had an accident), following directions, needing minimal redirection during certain activities, transitions between home and transportation, school, and in so many other little ways. This journey with Colin has not always been easy but the challenges have only made these moments that much more rewarding. I am so thankful for this man of mine for showing me the importance in all of the little moments in life...

 



31 for 21 Day 21: Homework

Chris and I chose to retain Colin this year because we felt he would really benefit from another year of the foundations. We also knew that he had grown and changed a lot over the summer so it would be another factor that would allow him to be more successful. I know I haven't talked much about how school is going this year (and I am going to avoid it a little longer, although it is generally going well...we are really happy with many of the changes) but there have been so many areas where we have seen improvement. Tonight when I was sitting with Colin doing his homework, I felt myself relax significantly because he's just grown up so much. It was a simple assignment (and it's reviewing words he already knows) but he was patient and even when he started to get off track was easily redirected. 

 

It's enjoyable to see how far he's come!

 

 

31 for 21 Day 20: Normal

I seem to be having some difficulty coming up with post topics right now and I think it's because we really don't have much to talk about. Life is just life for us; not everything is really that much different than what everyone else's is like. Sometimes I snap pictures or scroll through the pictures on my phone to see if it spurs the discussion of something so tonight, I tried to do that. However, when I asked for a nice smile from Colin, silly Colin kicked in and this is what I got...

 

 

I love this guy's personality (oh, and his first loose tooth is in there!) these days!

31 for 21 Day 19: Just Because

My mind is drawing a big blank tonight so this picture is a "just because" kind of picture. This guy has quite the personality! 

31 for 21 Day 18: Love

I hope one day someone will type the words "diagnosis of Down Syndrome" into their search engine and stumble on this post. And if they do, I hope they take away this message...

 

I was once scared too. I looked into the almond eyes of my new baby and I worried and cried over all of the things that I felt like I lost in having this baby I never planned for. I grieved for the child I thought I lost but I let the love I felt for him pull me through. Colin showed us the way. He has filled our lives with so much happiness and joy and he has completely changed our perspective on the world. We have learned to slow down and to be patient because some times, the best things happen when we least expect them. We celebrate all things big or small. Life is not perfect and it has lots of really challenging times but our family is stronger because of them. When I first looked into those perfect eyes I never thought I would be here ... in a place that is filled with so much love. We live, we love, we are family...


 

31 for 21 Day 17: Party

The kids' had a party tonight at a neighbor's house who were in Colin's Kindergarten class last year and also attend our church. The kids had a great time and it was nice seeing Colin interact with his friends from last year who all moved on to first grade. There were some really great spurts of Colin playing and interacting but other times when he preferred to play alone or with Kailey. I have seen him come a long way in terms of his socialization but I can see where his difficulties still lie. 

 

Princess Belle and Miles from Tomorrowland

31 for 21 Day 16: Getting Back into Karate

When Colin transitioned from private lessons after first starting to class lessons, it took some time for him to build up to making it the entire 45 minutes without needing breaks. The private lessons were 25 to 30 minutes depending on how it was going and then the classes were 45 minutes. He would go through cycles where he would make it the whole time and then times when he would need more breaks. 

 

However through the summer, he was in a really good place. He would be able to complete the entire class without ever sitting down or needing a break and was really following directions well. I could sit and hang out with the other parents and actually have a conversation without it being a distraction to Colin.

Unfortunately when school started again in September, a switch immediately flipped and he would cry and wouldn't go into class (we know it was due to exhaustion and the big change that was taking place). We stuck with it and with each week that ticked by, it would slightly improve. First he would go INTO class, and then start participating a little bit again, and then we at least got to a point where he would do a couple of segments before needing a lot of breaks. It got to a point recently where it was extremely frustrating because he was out more than he was in and although we knew he would need this time to transition back, we didn't think it would take this long.

 

However, we are finally started to see a shift happen where he is back to the old ways; he will make it a solid 25 minutes of participating before needing a break and the break is typically short before being able to finish the rest of class. Today was the best class he has had in 6 weeks because he only needed one five minute break, a few redirections, and he made it the entire 45 minutes. It was kind of like letting out a slow breath watching it transpire.

Colin's recent success is due to teachers who are extremely patient and understanding and keep pushing KNOWING that Colin can get back to the place where he was. It has been a really slow road BUT we know that he is progressing in the right direction and are seeing improvement little by little. The only downside is that we had to temporarily bypass testing for the next belt (mostly our decision) because he missed so much of class time recently that we did not feel he was ready (and probably would not have a successful testing session).

Looking forward to seeing him finally get back to a place we know he can be!

31 for 21 Day 15: Empathy

Cody had a well visit today. To say it was not fun is an understatement. The appointment was already in the range of Cody's "witching hour" and then we had to wait longer than usual. 

 

He spent MOST of the time (other than when Colin could make him laugh) crying. Typically, Colin actually likes visits to the doctor because he likes when they pay attention to him and check simple things like his heart beat, eyes, ears, etc.

 

However, this visit was particularly challenging for Colin because he had a really hard time hearing another patient screaming at the top of her lungs. One of Colin's positive traits is that he is empathetic to others' emotions. He has a really hard time when someone is emotional and crying, especially when it's more extreme than normal. There have been times when I have cried in front of him and he has a really hard time with that. When the patient started screaming, he scurried under part of the table and tried to hold it in. Then, when he couldn't handle it anymore, the crying started. It worsened when he found out that Cody was going to receive a shot himself.

Not a fun visit to the pediatrician today!

31 for 21 Day 14: Way Back Wednesday

 

I had fun looking through old videos of Colin for this post. This one in particular made me laugh because I completely forgot about this and what Colin used to do. You'll see him do it in the video (it's hard to explain in words) but he used to do this thing with his eyes where he got all serious and then he would yell or laugh to make us laugh. He was also a pro at kissing (one of my FAVORITES!). An oldie but a goodie!

31 for 21 Day 13: Family

"Family is like music, some high notes, some low notes, but always a beautiful song."

 

31 for 21 Day 12: Inclusion at church



After Chris and I had been together for a few years, it came up in discussion that we were ready to find a church together that we would both be interested in attending on a regular basis. We both were raised in a church; mine was one in which generations of family members attended, wed, had children baptized, held funerals for family members, many celebrations were held there, and one in which my siblings and I went through Sunday School right through our senior year of high school. Chris' involvement in his church was slightly different but he was also raised to spend Sundays in his local home church. After I went to college, I really only attended when I was home visiting and had gotten away from it a bit after I graduated and started my new life. 

 

 

 

When we were trying to figure out where we would start attending, we literally saw the "church on the hill" and decided to try it for the first time on Christmas Eve morning (it was a Sunday that year). It was beautiful inside and after the service and then were welcomed by members of the congregation, we felt that our search was over because we had found a place where we would be comfortable. 

 

 

Shortly after we began attending, Chris had proposed but our initial thoughts were that we would be married outdoors on the bay with a family member officiating. However, as time transpired and some events played out, we decided that we were looking for a more traditional place for our ceremony and it seemed only natural that we would be married in our new church. And so began a tradition for our family as we were married there and have now had our three children baptized in the same place as a growing family. This would not have happened had we not felt welcomed and comfortable in a place that feels much like it does when spending time with family members in their home.

 

 

 

When Colin was born, Chris and I went through a lot of "why us" and "this isn't fair". I'll never forget the day the pastor from our church came to visit us which was the same day the diagnosis of Down Syndrome was confirmed. I can vividly remember sitting in the living room of our old home having a conversation about Colin and how we were going to "get through this"; I can remember saying "but he has Down Syndrome" and him saying to us "so what?". That day was just the beginning of showing us it truly did not matter that Colin had Down Syndrome; he had an important place just like everyone else in the church. 

 

 

Colin is being raised in the church by our Pastor, Christian Education director, Sunday School teachers, and the church community who show him every week that he has an important place at the Presbyterian Church on the Hill. Thankfully, Colin will never know any different. We are thankful to people that accept him for who he is and understand that there are times when he needs a little extra help and assistance (like Sunday School) and are more than willing to accommodate those differences. You would think that the one place people with disabilities are accepted would be their church but sadly, I hear too many stories where people are not as lucky as Colin to be included in their church communities.

Rocking out at a church event Sunday night.

 

Colin is included at our church and he is a valued member; for that, we are truly lucky.

 

31 for 21 Day 11: Simple Sunday



 

Despite all of the topics I have to talk about over the course of Down Syndrome Awareness Month, sometimes there is a message that's lost and that is the fact that on many days, we don't think specifically about Down Syndrome. Our family has our own version of normal and that means we just live life the way that makes us happy together. We didn't feel like there would be a version of normal when Colin was born but we quickly learned that it just means our family has our own uniqueness. We still live life like most families do; we just have challenges that might be different than others.

 

 

31 for 21 Day 10: SONJ Baseball Clinic

Colin had a really great opportunity today to watch the Special Olympics of NJ baseball team play a game and then participate in a clinic afterwards with the coach and some of the players. It was a beautiful day with a great group of people and Colin really enjoyed himself. 

 

 

When we arrived to the field, the game had already started and Colin immediately sat down and got into the game. He's been really into baseball lately between playing in our yard and watching it on TV but it's one of the sports that we haven't really tried outside of home. There are aspects of the game we didn't feel he was quite ready for community play and so when this opportunity presented itself, we thought it would be a great way to see how interested Colin was. 

 

After watching Colin and seeing how interested he was in the game, one of the coaches called him over and asked him if he wanted to play. They took him out into the field and got him set and ready.

 



He even had some chances to bat as well. He absolutely loved it and the seriousness on his face when he crossed home plate was great.

 



The players and coaches were all great with him and I could tell he felt really comfortable because of how relaxed and interactive he was with everyone.

In fact, when it was time for the clinic part to start, I walked him over and was standing with him and he turns to me and said "go Mom! I do by myself!". I had to laugh to myself as I made my way back to the spectator area.

I am really grateful to Special Olympics NJ and the baseball team for a fantastic day! Colin had such a great time!