Wednesday, June 22, 2011

The Cart and the Horse

One of the pieces of advice that I tend to offer up to new parents of a child with down syndrome is to avoid thinking too much about the future. I think that it is the most overwhelming part of a new diagnosis because you worry about the things to come without knowing exactly what it is going to be like. When Colin was first born, all I could think about was what his adult life would be like. There are days when I still wonder and worry about that a bit, but we really are so much better with everything.

Sometimes I should follow my own advice better though. One of the things Chris and I worry about more these days is whether or not Colin's feeding issues will be better by the time he goes back to school in September. Since we started the feeding therapy journey, we really have only seen minor improvements and he has become disinterested in feeding himself since we have had to put food in his mouth a certain way. We try not to be too stressed about it and sometimes I remind myself that September is 2.5 months away. With kids, things can change so quickly.

Yesterday while at the grocery store, we ran into the mom of a young man with down syndrome who volunteers his time working at Monmouth University with the women's basketball team. When Colin was just a few months old, Chris had a dinner that I attended with work (basketball tip off dinner) and I saw this mom walking around the room with her son. Since the diagnosis and the journey was still relatively new to us, I was unsure how to approach her, but I finally got up the nerve and told her about Colin. She immediately had a big smile on her face and told me that Colin would be one of my greatest gifts. We talked for awhile and since then, I have enjoyed sharing Colin's journey when I run into her at the different sporting events at Monmouth.

When we saw her yesterday she was chatting with Colin and she asked how he was doing. Since I knew she would "understand", I brought up the feeding issues and the fact he was working hard to walk, but wasn't quite there yet. She contined to talk to Colin and just briefly said "it's ok, he will". While I was driving home I thought about the ease with which she said "he will".

And then I realized...she is the future. Her son is walking. He eats fine. He is active in his community. He is happy. He is loved. He DID all of those things that we are struggling through right now. So colin will (which we know), but sometimes it's just hard when you are IN the moment to remember.

As a side note, Colin's had some tough times the past week with the teeth again as they are constantly popping through. But, he has had some really funny moments too. While Chris and I were sitting on the floor tonight, I was feeding Kailey and Colin was crawling all over the place laughing and having a good time. He kept coming up to Kailey and trying to take the bottle away from her. I kept telling him no, he would crawl away and then come back and try the same thing again. For some reason, on the last attempt, he went to kiss her and then instead tried to go open mouth to her head (not to bite, just to explore I guess?). I very sternly said no and then Chris raised his voice a little and told Colin to "come here". Chris was pointing to an area on the floor to the left of him. Surprisingly, he started to crawl over towards Chris and when he got to the spot, he started pointing at the floor the same way Chris was. I couldn't help it, I laughed. So funny.

No matter how much I worry, or don't follow my own advice, I love Colin so much. He makes my heart swell with pride (just like I had tears in my eyes when he was singing the ABCs with the magnet on the fridge and said "ess" and "vee" so clear! He is so much fun lately and I am truly enjoying his age and his personality. And guess what? Our TRUE summer starts on Saturday when my parents are here for 2 months in their beach house. Woo hoo!! :)


Chromosomally Enhanced said...

Great advice...I know that i need to work on this...I now only have moments...then I come back to this moment and time...and what a great moment our kiddos are expressive and there personalities are shining so bright...Maddie likes to test the limits now...and i love it...Happy Summer! enjoy the waves! smiles

Nana said...

Can't wait for all of the fun either!!

randy said...

Hi Kelli: HAPPY Summer VACATION!!! Reading your post reminded me of all the times I overheard parents saying things like "well I know my child won't be wearing diapers on their wedding day or he/she will get rid of the pacifer before they go to high school etc..." All on THEIR OWN time in spite of "our" best efforts and worry time! Hugs - Randy