Every once in a while I think about how Down syndrome has changed my life. It seems like it's changed it so dramatically, but I think that really it's motherhood that has done that.
I think about Down syndrome a lot. I hear some of my friends with kids with Cora's age talk about how they don't really think about it much anymore, that they just see their child, rather than Ds. And then I wonder why I think of it so much. There really isn't a day that goes by that I don't think about it a little, I am sure.
Whether I'm in a bad mood and find myself watching the passing teenagers faces for some type of reaction as Cora waves at them from her stroller, or whether I follow her closely as she butt-scoots around the playground, never letting go of her hand as she goes down the slide, as the other kids her age run circles around everyone. It seems like Ds creeps into the back of my mind often, still.
Much of the time my thoughts aren't negative, but they're still there. I love my Down syndrome community, both her in real life and online, but sometimes it can be overwhelming always reading about milestones, frustrations and joys. Sometimes I just need to take a step back.
Hmmm... perhaps I'm feeling a little melancholy today. I don't know why. Although breakfast has been ready for some time, I am letting my little strong-willed and loud-voiced girlie watch Yo Gabba Gabba for a few minutes before I brave mealtime, once again. Sometimes I feel like just handing her the Veggie Stix and being done with it.
Sometimes it's OK to be in a mood.
But then I go looking through the photos from last weekend spent with Nick's family in Spokane for my sister-in-law's baby shower. What a lovely time. And what lovely people that love Cora so much. It's nice to be around people who can love Cora so purely and easily and don't share my constant concerns and questions. She sure is loveable. Even with her sass.
So here's a glimpse for the rest of you, of my beautiful girl loving her weekend away. Loving her family.
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| In case you wondered where Cora gets her whiter than white skin. |
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| On her feet. Even though she can stand alone a little, she still thinks she needs total support. |
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| Loves. Can't wait to meet Cora's sweet little cousin in a couple short months. |
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| Three generations. Lucky girlie! |
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| Signing "cheese." Because isn't that the correct thing to do when someone takes your picture? |
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| Being outside with Daddy is the best. What a smile! |
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| This girl loves her Grandma Pam! The feeling is mutual! |
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| Kisses from Grandpa. |
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| The closest to a decent picture with nobody closing their eyes. |
My little girl is almost one, and not a day goes by that I don't think about it. Maybe this will change when she's 3, 7, 15? Who knows? Like you, I don't have negative thoughts, but it is always there in the background. Between blogs, facebook groups, therapy and doctors appointments, it is impossible not to think about it. But I guess it is ok, this is our life.
ReplyDeleteCora is so cute and getting so big. I have been following along for several months and even went back and read about her first year. She is beautiful!
I think about Down syndrome a lot too, probably more than necessary. I don't find it necessarily getting easier to stop thinking about it either. For me, Owen is my only child and will always be my only child, so I think that definitely plays a part in where my mind goes. Cora is your only kiddo right now too and I have to wonder if that has something to do with your thoughts. I think it's OK to feel this way--it's valid. I also think it's great to step away for away and not read others' thoughts.
ReplyDeleteLove the pic of you and Cora together--SO cute!
Cora is such a precious little girl. I started reading your blog when we got our birth diagnosis and its been great watching Cora bloom! We are only 5 months into this journey so Ds is still on my mind almost all day long everyday, but not in so much a sad way anymore. I guess it will always be on my mind since there are constant reminders everywhere. Your family is beautiful!
ReplyDeleteLeah, I am going to honest here. I am almost 4 years into it and I still think about it at some point every day. I continually hear about people saying that they do not think about it or they do not see it and then I wonder what is wrong with me. I don't dwell on it in a sad sort of way, but I do think about it--especially when it comes to Ellie's talking. . . or lack there of. Ellie, like Cora, is also my only child so my entire world is focused on Ellie. Could that be part of it. Anyway, I just want you to know that you are not alone. btw, I cannot believe how much your Beanie has grown!
ReplyDeleteGreat pictures Leah! Love you!
ReplyDeleteThinking about you and sweet Cora! I absolutely love keeping up with you both through the blog... your honesty and perspective are so refreshing. :)
ReplyDeleteACK! Ellie signs cheese when you take her picture, too!
ReplyDeleteYes! The day does come when you stop thinking about it every day...well it did come for me. My Matilda is now 9 and I don't know when but I did stop thinking about it, stop comparing her development to others. I still do marvel at what a neuro-typical 9 yo can do but it doesn't chew me up any more... Your daughter is beautiful, and she has the look of such a loved child, she is going to do just fine in life!
ReplyDeleteI think about Ds pretty often because it affects every area of Russell's development, so how can I not? I don't feel guilty when I think about it either. It just is what it is. It's a part of our lives.
ReplyDeleteSuch cute pictures in this post Leah. Cora is a real cutie :)
Good post, babe, even though it made me sad and wish my mom was around to see her grand daughter. Debbe would have loved Cora so much...
ReplyDeleteI think about Ds a lot too. I never forget it is there. It does surprise sometimes, though, how little it matters. I think, for me, because Colin came first, a lot of Ben's behaviors I'm able to label as being a boy toddler. He's a little stinker just like Colin!
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