Wednesday, July 25, 2012

I've Been Waiting...

I think that when Chris and I brought Kailey home for the first time, I was seriously expecting there to be this instant bond between her and Colin.  I was waiting for Colin to gush all over his sister and show me how they were going to be best friends.  In fact, quite the opposite happened.  Instead of that instant brother/sister bond that I was hoping for, Colin could really care less that she was there.  He never seemed jealous (well, anything out of the ordinary) or had any over the top attention-getting scenes and he seemed to act as though she wasn't even there.  

Months later, I did a blog post about it (I'm not even sure where to begin to look to link it to this post) and was curious when I was going to see a change.  

I started to become more concerned when instead of playing nicely together, Colin started ambushing Kailey in a playful way to get her to "wrestle" with him.   

I think it took almost a year to start noticing some of the subtle changes.  This isn't to say that Colin was never nice to her, I just didn't see them playing together for longer periods of time and still expected this grand relationship between the two of them.  

However lately, they ARE playing together and I'll often sneak up on them talking together in their jibberish.  Nothing makes me happier (and often brings tears to my eyes) than to see or hear the two of them laughing together because they are playing so nicely.  

Colin knows she is there now and I see life evolving with them.  They are becoming friends (maybe not great ones all of the time), but their love and friendship is changing.  

If Kailey is crying or falls down/gets hurt, I have seen Colin go up to Kailey, pat her on the back, and ask her if she's ok.  I've seen him hold hands with her and give her kisses.  

I've watched Kailey follow her big brother around and try to do everything that he is doing.

I have watched my two children learn things so differently from one another and at different paces.  However, my expectations for the two of them will be the same and I can only hope that the love that Chris and I give to the both of them will guide them into their futures and to help establish a strong relationship with each other.  

I'm not sure what Colin's future will bring, and it's something that crosses my mind frequently.  I often wonder if he will be able to live independently and what will happen years down the line.  

I know that this is something that I can not have all of the answers to, or worry about now...

But I'm pretty confident that these two will always have each other. Although it may have taken some time to get here, I see some pretty big things happening for these two...

Monday, July 23, 2012

A Wonderful Weekend

This past weekend we attended our FIRST ever National Down Syndrome Congress meeting in Washington D.C. as a family.  To say that our experience was a wonderful one would be a big understatement as it was filled with so many things including, but not limited to, friends, information, tears, smiles, music, and fun.  

I was a bit nervous going into the weekend knowing that we would have the kids with  us and wasn't entirely sure how all of the logistics would work out toting them around with us to talks and such.  However, aside from the first night, I can honestly say that even though it was hard work having them with us, they were pretty good considering we lugged them all over and into different talks where we expected them to be well-behaved and quiet.  They spent a lot of time in their strollers, but were also given the opportunity when we were in the bigger ballroom to run around.

One of the highlights of this trip for me was meeting so many of my friends in person that I have already "met" through the blog and facebook.  It was so great seeing these people in "real life"!  I am a bit disappointed in myself for not taking more pictures WITH others, however I was constantly looking to see where my kids were that it was hard to do that.  Here is the one picture that I was able to get with some friends I finally got to meet in person!.  There were so many other friends it was great to meet and see again and others that I wish I had so much more time to talk with than I did.  

Another thing that was really neat for us was meeting so many new people that we would have otherwise not had the opportunity to meet.  One thing that was so exciting as well was being in a place that was filled with so many people that all had some story to tell.  It was neat walking around and seeing so many beautiful almond eyes together in one place.  It felt nice to be with others of our community.  

You know that one stereotype that people think about when they think about/talk about people with Down Syndrome?  You know, the one that says that all people with Down Syndrome are so social and want to hug everyone they come across? I think Colin was able to prove that this is in fact a stereotype because there so many people that I WANTED him to hug and say hi and he was being incredibly shy or not interested in it.  

We were able to attend all of the "bigger" talks in the ballroom that included self advocates, a mom speaking about raising her daughter, a best friend talking about his experiences with his best friend with Down Syndrome, musical performances and one of the best performances at the end of the weekend when all of the self advocates and siblings were up on the stage together singing and dancing to "Firework".  

We did attend some of the smaller sessions, but we never quite made it all the way to the end of those because the kids always hit their limits in the last half hour (they were 90 minute sessions).  I did get some valuable information at these though in the time that I was there.  Through most of those sessions, we tried to sit in the back and the kids played with our phones and the ipad.  I think I saw more episodes of Fresh Beat Band than I care to count!

We had some difficulties in our hotel the first night because even though the kids fell asleep on the drive over, they thought it was a big playroom once we got in.  By 10pm we were walking around in the mall area below the hotel for an hour trying to get them back to sleep.  

Saturday night we figured we could avoid the sleep disaster in the hotel room and walk around to see the monuments lit up at night.  At worst, the kids would be awake but we figured that after the long day and swimming in the pool, they would fall asleep pretty quickly on our walk.  We used the Metro all day on Saturday and Colin loved being on the TRAIN.  He tried to stay awake on our ride to the monuments, he really did.  

Hey, wake up! We're at the Washington Monument!

There were so many great things about this weekend and I was so happy I was able to attend.  I think the next time we go, we will definitely decide and register early so that we can set the kids up with the Kids Camp.  I figure they can only have more fun than they did in talks!

I also look forward to the future when the kids can attend the brothers/sisters conference because it was so great seeing so many of the siblings there supporting each other.  Brought tears to my eyes!

Since the ride home took a little bit longer due to traffic, the kids were extremely grateful to be home which was evidenced by them running from room to room evaluating all of their things and then having a nice meal together...

This picture cracks me up!

I am so thankful that we had this experience together and for all of the new friends and old that we were able to meet.  Looking forward to the next one!

Thursday, July 19, 2012

You've Got a Friend in Me

"Some people come into our lives and quickly go.  Others stay for awhile and leave footprints on our hearts; and we are never, ever the same".

I have been lucky in my life to encounter some truly wonderful people that I can call my lifelong friends.  They are my people that have been there for me no matter what circumstances I have encountered to love and support me.  I am thankful for my clan of people...

As we all start to have kids of our own, it's been fun for me to hopefully instill that sense of friendship among our kids with each other.  Who knows what the future will bring, but I can only hope that they can feel that love and support that we feel with each other.  

One particular set of these friends of ours is the Gallagher family and it's been fun for me watching our kids build those same kinds of friendships with each other... 

The most dysfunctional group picture!

If only adults could find a way to love so easily and without judgement...

Wednesday, July 18, 2012

Sensory/Feeding Issues

I am often asked when I see friends/family I haven't seen in awhile how Colin's feeding issues are going.  I don't mind being asked because I have a pretty standard answer now and because right now, we are pretty easy going about the eating habits that Colin continues to have.  My standard answer is "they're NOT going, he only eats 4 things, but, it's ok for now".  

4 things Colin will eat:
- yogurt (seems to be only one kind he will eat in the original packaging)
- vanilla pudding
- cottage cheese with raspberries or strawberries (have to be cut up small though or he will spit out the chunks)
- vanilla ice cream

He seems to be hungrier now where he will eat multiple puddings or yogurts in a sitting and his bowl of cottage cheese is pretty hefty, but as hard as we try, we can not expand into other things.  Occasionally he will seem interested in a pancake, but after making him one, will only eat 3 bites and if we are eating pizza, he always wants a few bites, but as soon as it cools down he spits it out because it feels funny.

When we were at our Trisomy 21 clinic visit at CHOP, the pediatrician was really great about everything that he is or is not doing, but she said that in the future, we may need to address the feeding issues again in terms of therapy.  This is discouraging to me because we have gone this route and felt as though we did not get anywhere with him.  

This is where the sensory issues come in.  Since we spend a LOT of time on the beach, we often find Colin rubbing his face in the sand or eating it.  When I say eating it, I mean, picking up (using his pincer grip) clumps of sand and eating it over and over and over again.  

I changed a really poopy diaper this morning that consisted of clumps of sand everywhere.  Try wiping mushy, sandy poop.  The other day when I was on a new beach with a friend, there were several people that were staring (unfortunately, I can't help but notice) and two different people felt it was important to tell me (as if they didn't see me telling Colin no over and over again).  The problem is, even if I tell him no and "remove him" from the situation, he finds another area to himself and starts eating again.  It also depends on his mood, level of tiredness and temperment for that day.  He is generally a sand eater when he is really tired.

Yep, my kid eats sand.

Although my attitude is nonchalant on the issue, it does really frustrates and discourages me.  We have now been facing feeding issues for 3 years!  It's one of those pesky things that just haven't gone away.

Monday, July 16, 2012

Our Happenings

When I opened up the blog to update, I couldn't believe how long it's been since I last put a post up.  The summer always runs on a different schedule for me and it's amazing that I can update almost nightly during a school year that keeps me incredibly busy, but not so much during the summer.  We are certainly keeping busy with beach days, working, birthday parties, play dates, and occasionally getting to hang out home.  Daily chores have certainly gone by the wayside and replaced with going back and forth between my parent's beach house and here (obviously SO much more important!).  

We are gearing up to head down to Washington D.C. this weekend for the National Down Syndrome Congress Conference and I can't wait to meet so many of you bloggers that will also be attending!  

Kailey's personality has taken off and she has become so fiercely independent.  She is one determined little girl to do what SHE wants WHEN she wants.  Her speech is really blossoming and it's interesting to watch her tackle and accomplish so many different skills rather quickly.  She is pretty dramatic and can be whiny when things aren't going her way (that one is tough for me!).  However, she makes me laugh and I often can't get over how cute she is!  She has this screechy little laugh that I absolutely love!  In so many ways she is just like her mother, but one of those is when it comes to the temperature outside.  She sweats so easily and you can often find beads of sweat on her nose.  

Things have been interesting with Colin since he started up with school again.  We have had a tough transition because he is crying every day getting on the bus.  I have also cried 4/5 days of school so far as the bus pulls away seeing his face so upset in the bus window.  I absolutely love the bus driver and aide because they are always so loving and the aide always picks him up and gives him a hug before putting him in the seat.  I wish it were easier (mostly for me!)  but after communicating with his teacher, I know he is doing well at school once he is there.  The only strange thing is that he has been "wetting" through his diaper frequently, but towards the end of the school day.  It just makes me wonder if his diaper is getting changed during the day (aside from when its poopy).  I just can't imagine him peeing through his diaper every day.  

We are once again having some sleep issues, but this time, it's happening in the middle of the night.  Almost every single night now, Colin is getting up between 12 and 2 and shows up at my bed side.  A lot of the times we would be so out of it we would just pick him up and fall asleep with him in our bed (ugh) or lay down with him in his bed and then we would fall asleep there.  Last night we tried putting him back in bed every time he got out, but the crying is very different than what it was when we would be putting him down for the first time.  I'm not sure if it's dreams he is having or what, but it's so strange to me.  I'm too tired to keep getting up with him!

On Sunday, Chris and I "celebrated" (we are actually celebrating tomorrow night) 5 years of wedded bliss. It's amazing how fast time flies, especially after adding kids to the picture.  I look at the pictures and it honestly feels like yesterday!

I love you Chris!

Monday, July 9, 2012

1st Day of Summer School

Unfortunately, this picture does not adequately depict how Colin was on his first day of summer school today.  In fact, he was crying all morning since I mentioned school and the bus and was quite hysterical actually getting on the bus.  Don't get me wrong, we are really happy that he is starting up again as he was making a lot of great strides in his speech during school, but it really tugs at your heart strings when he is that upset.  I know he will probably be fine and have a great day, but I. don't. like. the. crying.

Monday, July 2, 2012

Congratulations Tim and Val!

This weekend we celebrated the marriage of my brother Tim and his new wife Val.  It was so much fun for us as we had all of my family together (including grandparents, aunts, uncles and friends) to celebrate this very special day for the two of them.  

Growing up in a family of 4 kids who were very close in age was not always the easiest in terms of us getting along.  I think Tim will tell you that him and I did not get along very well when we were younger (it may or may not have something to do with me being the oldest and a rule-follower), but as we got older, we became closer and closer.  I am very thankful to not only call Tim my brother, but also my friend.  Words cannot express how happy and proud I am of him and all that he has accomplished since he moved to North Carolina and started his new life there with Val.  We wish them all of the best!

Colin had a very special job in Tim's wedding as the ring bearer.  He had an adorable little tux that matched the best man (his Uncle Pat).  The day started out a little rough for us with the kids because when we got to the hotel with them, they were both losing it (after only a short nap).  

Thank goodness for technology because the only thing that seemed to calm them down was the Fresh Beat Band on my phone.  I think they were both just overheated and overtired.  

However, they both pulled out their A-game as Colin was absolutely adorable walking down the aisle and Kailey was on her best happy-behavior.  

I wonder why I tortured my daughter with toole when I HATED the material growing up!

Aunt Kimmy helped out with Kailey as Chris and I had other jobs in getting Colin ready.

My brother Tim (groom), my brother Pat (best man) and Tim's new son CJ (who played the bridal music!)
We were a little concerned at the rehearsal because Colin wanted nothing to do with "practicing", but when it came to game time, he did exactly as he was supposed to (minus the pillow). 

The ceremony was beautiful as they confessed their own personal vows to each other and became husband and wife!

Matching tuxedos!

The happy parents of the groom.

One of my most favorite pictures of the day!

Granddad and Colin

He looked so handsome!

We are so lucky to still have 3 of our 4 grandparents with us to celebrate!

Daddy and Colin

They make me giggle!

They're cute and they know it!

The new happy family!

Unfortunately, it was 90+ degrees
Waiting for his ride to go home.  By 7:00, Colin and Kailey were DONE.

Celebrating 65 years of marriage! Chris and I only have 60 more years to go! Lol...

Chris and Grammy

Chris and I were able to enjoy the rest of our night thanks to our good friend Leslie who came and picked the kids up (our plan all along because I knew the kids wouldn't make it).  I was a little hopeful that they would at least have made it a little bit to dance at the reception, but Colin wasn't a fan of dimmed lights and loud noises and Kailey just wanted to eat so it was a little stressful until they left.  However, we all had a great night together.  Congratulations Tim and Val!

...waiting for our guests to arrive for breakfast the next morning.