Dear Me- Your World Isn't Crashing, It's Just Shifting

down syndrome mom

Dear Last Year Me-

With Harper’s birthday here I have been contemplating all that has happened in her first year of life. What a neat experience it has been to really watch and realize all that happens in that first year. I’ve truly never paid attention to what a miracle a baby is, how much they grow and learn. It’s fascinating and I’m glad I was given this gift of new insight into how special and precious life truly is.

Although your thoughts and processes seemed to slow down this year while we watched Harper grow, life did not. I can hardly believe we are celebrating her birthday. An entire year of our lives with this sweet daughter has flashed before our eyes. It is impossible to imagine all that we have felt and that the journey we have been on could fit into 365 days, but somehow it has. Time waits for no one I suppose.

I wish I could go back to the day Harper was born and whisper into your ear. I would tell you that an incredibly rude doctor would come into your room the next morning and that you’d hate him with all your heart, but it would only last about 5 months. You still wouldn’t like him, but you’d forgive him.

I would tell you that it’s okay to cry but it would only last for a brief minute. That it might feel like it would never end, or that you would drown in your own tears, but they would subside. I’d tell you that crying was necessary. That even grieving for what you had imagined was necessary and okay. You didn’t need to feel guilt.

I would tell you that when it felt like your entire world was crashing down around you, it was really just shifting into something new. Something different. Something better. That your world was moving to a realm few others ever get to experience. I’d tell you it was just like moving, and no one likes moving. It’s hard work. But when you get to your new home, it’s different and exciting. There might be a few kinks to work out (open heart surgery), or furniture that doesn’t seem quite right (oxygen tanks and tubing) but you’d settle into the place that was meant just for you.

I would tell you to look at that precious baby and not be scared. I would tell you to hold her more and kiss those chubby cheeks like there was no tomorrow because having her in your arms would make all of the sadness melt away. And before you’d know it, that baby wouldn't be so tiny anymore.

I would promise you that you wouldn’t always look at her beautiful face and think “Down syndrome”. You would very soon only see Harper. That when you did remember words like Down syndrome, you’d know what a truly beautiful thing an extra chromosome was.

I would tell you that it’s not all going to be rainbows and butterflies. You knew it at the time, but it’s nice to hear it from someone who knows. This year me knows that there are struggles. This year me would tell you that even those struggles can be beautiful in their own way. This year me would also tell you that we made it through the first year, to just hang on and you would get there, no matter how many times you felt you could barely make it.

I would tell you not to compare. I’d know that you would still do it, but there is something so freeing when you realize how unimportant comparisons are. I would tell you that Harper is happy where she’s at and doesn’t care one bit about what other kids can do before she can. I would tell you that when you stop caring, that is the exact moment you start seeing what she CAN do.

I would tell you about the goodness in people, the kindness of friends and strangers. I would tell you that you’d be thrust into a world where you’d have so many new friends and so much support from new and old friends alike.

I would tell you that open heart surgery really stinks, but only about half as bad as you would expect. I would tell you that you were so much braver than you imagined you could be. I would tell you that watching how brave and strong Harper was would inspire you to start living your own potential too.

I would tell you that your boys would teach you so much. They would show you how easy it is to love. How easy it is to be excited about what you thought was so hard. I would tell you that this experience would be amazing for them. That you would see just how amazing their spirits are and how special the bond is between siblings.

I would tell you that you would write about Harper’s birth and it would be beautiful and so comforting to share it with people you knew. But I would tell you that you would change your mind about part of it. Last year you wrote: “Although it’s not a path I had planned on, nor one I would really even wish for, it’s my path.” I’d tell you just how silly that was. I wouldn’t even be able to believe you had felt that way because this year me knows that I would wish for this path again and again and again. This year you knows the absolute joy and happiness that last year you couldn’t comprehend.

So happy birthday to our beautiful daughter. Our precious gift. The best surprise. I hope she has enjoyed this year with us as much as we have enjoyed the year with her. We can’t imagine a life without our little Harper Joy.

This letter is part of DSDN's October Down Syndrome Awareness Month campaign. We asked our members to write a letter to themselves during the time they received the diagnosis. Do you know a parent with a child under the age of 4 who needs connections and support? Let DSDN help and get started here. Janelle Smith is a wife, mom of 4, and lover all of things pink thanks to their caboose and only girl, Harper. After a surprise birth diagnosis of Down syndrome, Janelle has loved reaching out to other families, making new friends, and sharing experiences. She feels very blessed to now be considered among The Lucky Few.

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