Heart Day – 5 Years Later

Today is the 5 year anniversary of Rowenna’s open heart surgery. The longest day of my life. The hardest day of my life. The day a surgeon gave my girl a new lease on life, and rosy cheeks to boot.

This is also the time I tend to sit back and take a little inventory of how life has changed since Rowenna came into my life. When she had her surgery, I was suddenly overwhelmed by the idea that her heart was fixed but Down syndrome was here to stay. It was a very long and isolated hospital stay for me as I grappled with these thoughts and feelings alone.

With non invasive testing and termination rates still a hot topic in the Down syndrome parenting community, and varied approaches to bringing “fair and balanced” information to those new to a diagnosis, I often wonder what to share of Rowenna’s life, and with whom to share it.

Back when I sat by her crib side in that hospital room and I wondered and worried about her future, I could never have imagined sitting here, feeling like this, today.

Rowenna has a lot going on. The autism piece, the non verbal piece. The we-aren’t-100-percent-sure-what-she-knows piece. The non verbal piece has been a particularly challenging aspect of her diagnosis. I long to hear the word “momma” in that sweet, sing-songy voice of hers.

But the thing is, while there are challenges, I never could have imagined the peace. The acceptance. The go with the flow and see where she takes us.

I spent a lot of time worry about whether or not she would do certain things. That faded with time, though it didn’t seem like it would. She will do the things she is going to do and will do them in her own time. I will guide her, but for the most part, she blazes her own trail.

We have had occasion to meet many new people in the last few months, and the overwhelming consensus is that there is just something about Rowenna. And there really is – there is just something about the twinkle in her eye, her smile, the tilt of her head. Without words, she draws you in. She is so affirming and warm and vibrant.

And while I worry a great deal about the choices we make for her and about her future and about her well being, there is peace. It’s in the way she reaches over to pat my cheek reassuringly, the way she gently holds my hand.

I don’t wish I could tell Five Years Ago Me that this would happen. I wasn’t ready to hear it then. I wouldn’t have believed it, and I wouldn’t have wanted to believe it.

But I will tell you, reader. Maybe you are new to all of this or maybe you having one of those days you want to run and hide.

It will be ok. You will find your own peace.

I am so glad to have found mine, in my own time and in my own way.



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