Down syndrome

Sit in the sunlight.

I’m laying on the floor next to Abby as I write this. It’s been a rough week for us. Things with Casey have been rough. We can’t find a damn pediatrician, so we’re using his reserve ADHD meds that make him a lot more emotional. Abby’s been sick. And yesterday, Abby’s future fiance, Colin, who has been MUCH sicker, had to have surgery because his throat had swollen to the point where it was compromising his breathing.

Interjection: His mom Melissa is my best friend, one of my biggest cheerleaders and my ROCK during the hard times.  She has a son with Down syndrome (Colin) and a son on the autism spectrum. She also has FOUR other kids. When we moved here, SHE got a hold of the Bishop (our congregational leader at church), had a long talk with his wife and within hours they were at our house welcoming us to the state. She’s the one who calls doctors for me to get supplies for Abby. She doesn’t allow people to mistreat me and stands up for me when I’m too flogged to stand up for myself. She’s the person in this world I can say ANYTHING to, no matter how terrifically distasteful. I’m grateful every day that autism and Down syndrome were the vehicles for me to meet her. So when something happens with her, it’s like it’s happening to my own sister. THREE of my facebook friends lost their children with Down syndrome this summer alone. It’s never too far from the back of our heads. The worry is a weight.

In addition to all of this, I’ve been depressed.  I’ve been really working to get myself out of this funk I’m feeling. It’s tough to move as much as we do on it’s own. Add to it that I’m terribly nervous around new people and it makes for some lonely times. I am myself online. There’s nothing in the way of me being or saying the things that I am or feel. In real life though, my anxiety gets the best of me and I feel like people don’t see me for who I am.

Maybe that’s a plus. I’m not sure.

My husband expressed this worry to me the other night. He said he was worried that I’ll stop looking for friends in real life because my friends are all online. I told him that I didn’t know what he was talking about as I poured myself and my computer a drink before I went on laughing with some other parents of autistic kids about how silly my husband is.

Back to the present. I’m laying by Abby. We’re in her room as she plays with her toys. She’s still all mucusy, so she gurgles as she breathes.  I think about Colin. I cry a little as she pats my face. When I walked in a few minutes ago she pointed at her book across the room and did the sign for it. She was sitting in the patch of sunlight cast by the window on her floor. Everything around her seemed brighter, calmer. I handed her the book, which has little mirrors in it. She pointed at herself the mirror and smiled. Then looked up at me and did the sign for “pretty.” I smiled and she then pointed at me and pursed her lips for a kiss.

She gets it. Abby at two, gets this whole life thing a lot better than I do. Sit in the sunlight. See myself for who I am. Kiss.

There are no easy answers, really, but life can be much more simple than I make it out to be. Life also has a way of making me grateful for things I would have never been before. Grateful for my online friends and support group that love me for who I am. Grateful for these groups for providing me with a friend that I cherish. Grateful for every single moment I get with my daughter who doesn’t yet speak, but can communicate beautifully. She’s on my lap now, pointing at the door. Looks like it’s time to go.

17 thoughts on “Sit in the sunlight.

  1. Oh Lexi, I am sorry you are struggling so much. Move yourself to Utah next time and we can be friends in real life too. I'm a pretty freaking fantastic friend.I love the story of Abby! What a blessing she is.

  2. <3Also, we need to meet IRL so you can tell lance that online friends really do come true. :-). I'll bug my husband to figure out when we make the next RI trip. And no fear…you basically described me too with the whole "moving a bunch, socially anxious, online I'm my true self" thing. We can sit in that boat together. 🙂

  3. Yet another way our children teach us so much about ourselves and about life. Beautiful girls, both of you. 🙂 Btw, I never would have gotten that you were nervous around new people – you're just as cool in person as you are online.

  4. Ah, love this. Found you through Marj, who I love.Your words are beautiful, grounded.Your blog is physically beautiful. Would love to know who helped you design it.Would love to get to know you better. Your attitude about what we have in our lives, is something beautiful…a transformationAnd how many times can I use the word beautiful this morning?But you are blessed with a beautiful understanding of life.A pleasure to meet you.

  5. I can see so many parallels to my feelings and my struggles within your Posts and the Comments others have left… so glad to have discovered your Beautiful Space here in the Land of Blog. And Abby's countenance does have that Lovely inner Peace and Calm that she is obviously sharing with you at that moment. Young Children are so Fresh from the Father that they experience the whole Joy of Life thing much better than we often do as we age. Example: Kids skip and I can't remember the last time I saw an Adult doing that anymore?!?Blessings from the Arizona Desert… Dawn… The Bohemian

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