Our journey thus far hasn't consisted of one hard thing, or two, or three or even five…it's been a bumpy road wrought with hard things starting last July and only now is the road starting to show signs of smoothing out. And while I would rather forget the last 15 months and just celebrate our beautiful warrior daughters, I can't really do that. I also can't even attempt to sugar coat anything because how can you sneak into a conversation with a new friend that yes, Audrey had open heart surgery at 4 months old, without making her stop in her tracks? I can't. And I can't leave out that information either because it is part of our story.
Today I dropped Harper off at preschool and she told another mom that she and Auds were going to be Super Women for Halloween and that got us talking about why those are fitting costumes this year. The mom said, "do you mind if I ask you about that?" And I was happy to talk about it because talking about the elephant in the room feels good. So here we are talking and I try to keep it short and lacking details but the best I can come up with is, "Harper is superwoman because she's an awesome sister and Audrey is superwoman because she had open heart surgery at 4 months and it's been a rough year and she's had feeding challenges and spent a month in the NICU and before that I was in the hospital on bed rest for a month and before that we lived in Estonia and curtailed to prepare for this….so….what about you, what do you do?" And she can't answer because she's crying.
It's a lot to take in and it's a lot to spill out to someone but it is what it is. But, it's ok when things aren't perfect. Simple. Things get hard, things turn out different than we expected, dinner got burned, Harper fell down and hurt her knee, it rained while my clothes were hanging outside to dry…..it's ok when things aren't perfect. Then when I remember that, all of a sudden the self-imposed pressure to do it all right just melts away.
It's Down Syndrome Awareness Month, next time you see someone with Ds (or any disability for that matter), look them (or their parent)n the eye, smile, and say hi. They add a ton of value, life, and perspective to our communities.
Today I dropped Harper off at preschool and she told another mom that she and Auds were going to be Super Women for Halloween and that got us talking about why those are fitting costumes this year. The mom said, "do you mind if I ask you about that?" And I was happy to talk about it because talking about the elephant in the room feels good. So here we are talking and I try to keep it short and lacking details but the best I can come up with is, "Harper is superwoman because she's an awesome sister and Audrey is superwoman because she had open heart surgery at 4 months and it's been a rough year and she's had feeding challenges and spent a month in the NICU and before that I was in the hospital on bed rest for a month and before that we lived in Estonia and curtailed to prepare for this….so….what about you, what do you do?" And she can't answer because she's crying.
It's a lot to take in and it's a lot to spill out to someone but it is what it is. But, it's ok when things aren't perfect. Simple. Things get hard, things turn out different than we expected, dinner got burned, Harper fell down and hurt her knee, it rained while my clothes were hanging outside to dry…..it's ok when things aren't perfect. Then when I remember that, all of a sudden the self-imposed pressure to do it all right just melts away.
It's Down Syndrome Awareness Month, next time you see someone with Ds (or any disability for that matter), look them (or their parent)n the eye, smile, and say hi. They add a ton of value, life, and perspective to our communities.
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