She is 2 years old and nearly 5 months, though we talk a lot about her third birthday (and her fifth comes up a lot too). Lots of balloons, cake, all her friends.
It feels like she is way beyond her years in so many ways. We chat. Not just words or pointing or a few words strung together but real conversations where she asks why, and spouts sayings (note to self: to cut down on my use of sayings and find words to express myself more often) like “I can’t believe it”, “oh yes, I remember that”, i guess so”, “that will be great” and “it’s just the way it is (note to self: expect an exasperated correction by her if I say it’s just the way it goes).
Most of the time, she runs circles around me, around almost every other kid I know. She has boundless energy from the moment she wakes (after she’s gotten over her devastation about having been asleep). She sprints and dashes around the house, has endless curiosity, eats heartily, talks non-stop and is simply often not tired at 10:00pm. And this is a blessing, yes, but it has made our decision to agree to open heart surgery on her excruciating.
She was born with a couple of structural issues to her heart. They have never impeded on her but because of them her heart is having to work significantly harder than the norm (potentially contributing to her rather small size). And according to doctors, there is a real risk of leaving it as is. That it can’t get better. That though she appears fine, she is “sick”.
They say nobody knows their child like a mother does, like parents do. And to me, to us, she is abundantly healthy and vibrant. There cannot possibly be anything defective with her, least of all her heart. Impossible. I want so badly to just leave all as is; I am petrified of tampering with the status quo that seems so good. What if she is the one percent where she grows into her condition, never needs surgery, where (and I know this may sound crazy) but the way her unique heart is built is actually what contributes to this wow life force she possesses. That it’s a good thing.
But then my husband and I are not cardiologists. I don’t even exactly understand the problem, I just know that whatever it is, it does not thank G-d affect her at this point. And it’s not just one cardiologist we’ve spoken to but many. And many surgeons too. Including the best in the world. And they all say the same. That she needs the surgery. Only one seemed to see the whole picture, and spoke of the choice to leave it, monitor and potentially only do the op in a few years. But he too said that at some point it was inevitable, and probably if he was in the same position, he would opt do it now.
And so after many months of resisting, fighting, willing otherwise, praying, wishing, hoping, searching, investigating, trying alternative healing, having evenings in her honor (thanks to special friends), we finally made a decision. To do it. In America. In just over a month. And I wish I could say I am at peace. I expected to be. I thought perhaps the agony was in being in a place of limbo.
But then there’s the fear of messing with a body I intuit to be working so well. There’s the actual doing it. Picturing her connected to life support during the surgery. There’s her carefree soul, so joyful and delighted by life and the world. How do you explain it to her? She knows about “hostipals” and has had an extreme aversion to every doctor we’ve ever been to – ever since a few weeks old. This is to the point that she often blurts out at random times “no more Dr Leora” and “I’m better”, and even more so, when she has a runny nose or has fallen, for fear of those few minutes in her kind and non-invasive pediatrician’s room. So yes, I am concerned about the trauma aspect.
Then, there’s the “what did I do to cause it?” guilt. The painful kind because it persists and I’ll never have an answer. But I know I have tried my best for this child, going way beyond what I can manage most of the time. Really, I want to do more; I want to protect her. And on some level I thought I could heal her with love.
But I also know that it’s not about me, that she has her own destiny, her own things to go through. That yes, our paths collide perfectly, but she is her own person on her own journey. That she doesn’t belong to me.
And so I resolve to keep trying to do my best. To accept. To be brave (a word we use frequently in this house – normally for both of us enduring a nappy change when she has a rash). To be really brave.
And I pray with all of my insides that it will go so well. That one day we will be living life together, maybe on a mountain or in the sea or somewhere exotic, eating copious amounts of fruit as we do, and we will talk about this time so long ago, and it will be behind us. We will laugh and cry and take in the sweetness of the moment. Of being together and being alive. And we’ll breathe in the sweetness of life. With its challenges and more challenges and yet all its beauty.
Please pray for a complete recovery for Noa Tzipporah (Bat Liat). For a truly successful once-off surgery and an amazing, speedy recovery (and for us all to cope throughout).