Today is Rowenna’s Heart Day.
A year ago today, Rowenna was carried away in the arms of an anesthesiologist while hubby and I stood in stunned silence. I had the fleeting thought that I have the sweetest baby since she had gone so willingly and spared her mother the heartache of watching her cry.
I also had the fleeting thought that it would be the last time I would ever see her awake and smiling. As I’ve said before, watching a child go through open heart surgery is nothing I would wish on even my worst enemy. No mother should ever have to have that thought flash through her mind, especially when it is a legitimate possibility. I will never forget how she looked that morning and I protect that memory fiercely.
But thankfully, Rowenna was in extremely capable hands and 9 hours later she was wheeled out from the operating room, a little smile on her lips. That’s when I knew she was going to be ok.
A strange thing happened then. Four months after she was born, I was staring down her Down syndrome diagnosis again. I had no idea how far back in my mind I had put it so that I could handle the heart thing until it came careening, screeching back into the forefront. There were rough times after her heart surgery while I grappled with the diagnosis again, a diagnosis that couldn’t be fixed or cured. Time and the support of family and friends got me through it.
A year later, I’m staring it down again.
We’re thinking of a sibling for Rowenna. But for us, getting pregnant again isn’t just as simple as deciding whether or not we want another child or have the resources to provide for another child.
Because I’m a balanced translocation carrier, we have to be open to another child with Down syndrome in a way that the vast majority of people do not. The fact that having another child gives us pause at all has sent us into tailspin. If we hesitate to welcome a second child with Down syndrome, what does that mean for Rowenna? Do we really accept who she is if we hesitate? Is it wrong to worry about providing for two children with Down syndrome? Do we not love her as much as we think we do? We’re floundering, and there’s not a lot of places to turn for help out of this.
This is a very isolating feeling. I’ve hesitated to post this for a few weeks now because I know it will not be welcome in the Down syndrome community. I’ve even backed away from a few sources of support because I no longer truly feel a part of the Down syndrome community.
So here we are, a year after tackling this diagnosis, staring it down again. We’ll get there. We’ll come to an understanding again. I know with a lot of prayer, patience, and love we’ll be at peace again.
In the meantime, we are blessed with a girl full of smiles – a girl who is really developing quite the sense of humor. A girl we love very much.