One Day At A Time

This morning, Hunter was home with us because he was waiting for a repairman to come to our house. He was sitting at the bar eating cereal while I was making Colton's morning bottle. He commented on how many things I needed to make his bottle. I had Nursery Water, Formula, Rice Cereal, Thick It, Zantac, and Gas Drops. We've added Zantac to his bottles twice a day to help with Reflux and Gas Drops because I think the baby food he eats once a day is causing gas pains. It's quite a process to make his bottles. Hunter helped make bottles with Weston, but with Colton, it's just easier for me to do it. The hard part is, they don't always turn out the same thickness so I sometimes have to adjust things on the fly. It's like my grandma's recipes...she's done it so many times, she just knows how much to add without really measuring it, so it's hard for me to recreate her dishes. Making Colton's bottles is the same. Sometimes, I feel like all I do is prepare and wash bottles. When we leave the house, I make Ziploc bags with his formula/rice cereal/thick it combo because it's too much stuff for those formula dispensers. I told Hunter that I only had 5 more months of bottle making and bottle washing...which is exciting....but also a little sad because that means he's growing up. I know that I will probably have to still use the Thick It for his milk, but that shouldn't require as many ingredients. At least I hope not!

I started thinking about the future with Colton, as I do frequently. There are so many unknowns...and at times, it's very scary and overwhelming. There's a Facebook group that's for parents who live in our area that have a child with DS. It's a great place to connect with other parents and ask questions/advice. Some of the things I read on there are very encouraging, while other things are very discouraging. I try not to let it bother me too much. I know that everyone's journey is different, just like with any child. No two kids are alike. So...all we can do is take it one day at a time. When Hunter worries and talks about something, I always tell him, "We'll cross that bridge when we get there." Why worry about things we can't control? One piece of advice I've read several times from parents who have an older child with DS is to worry less about the future, and enjoy your child at each new stage. After all, none of us know what tomorrow may bring. Again...one day at a time.

Hunter and I began watching the new season on A&E called "Born This Way." We're not around many adults with DS, so it's nice for us to see what they're like. They each have their own unique personalities, which is fun to watch. Some of them wear glasses, some don't. Some of them have a great vocabulary and speak well, while others are a little bit more difficult to understand. If you haven't watch an episode, you may want to give it a shot. It's nice to see how well these young adults are doing, but it's hard for me to imagine having a child like them someday. It's not a bad thing, just very surreal. Right now, he's just a baby who really acts like any other baby. Other than his low tone, you can't see much of a difference. It's just physical now...the cognitive delays aren't very obvious yet. But I know it's coming...and it puts a pit in my stomach and sometimes takes my breath away. I do have days when I wish he wasn't "Born This Way," but then he wouldn't be my Colton. My beautiful, sweet, happy Colton. It's gonna be a hard journey, but it will be a rewarding journey. 99% of the time I'm strong and positive and taking it one day at a time, but occasionally those fears and worries sneak through my mind and overwhelm me. And that's ok...because I'm human. I'm gonna have sad days, hard days...days I wish things were different. One thing I do every single day is listen to Christian radio...either KLOVE or Pandora. I like to do that while I'm driving in the car or while I'm getting ready each morning. It gives me peace and lets me know that I am not alone on this journey. A song that always brings me to tears is "Lord, I need you," by Matt Maher....

Lord, I come, I confess
Bowing here I find my rest
Without You I fall apart
You're the One that guides my heart

Lord, I need You, oh, I need You
Every hour I need You
My one defense, my righteousness
Oh God, how I need You...


Yesterday and today were hard days for me. I think I'm just tired. I've had both kids home all summer and I'm constantly torn between playing with Weston, doing chores, make sure Colton does his therapy (both physically and orally), and finding time for myself. I'm also realizing that this is the very first August since I started Pre-K that I'm not going back to school....as a student or a teacher. It just feels weird because I've done that for almost 30 years. But...I'm very excited to get to stay home with my boys. I can get more involved in their schools and make more memories with them. Pretty soon, we'll get into our routine and I'll miss these crazy summer days. But for now, I tell myself...

Just keep swimming. Just keep swimming. One day at a time, Carrie. One day at a time.