Gabrielle had her last surgery at 11 months old. She is now 3 1/2 years old.
I get a lot of emails from parents with babies just diagnosed, or still in utero, that have just received the diagnosis that their child has Tetrology of Fallot. Each individual story is so different, even with the same diagnosis and I can only share our unique journey. But to those parents, even with such a diagnosis, there is so much light and joy that comes to you too. Because I’ve found that somehow, Gabrielle’s heart reminds me that life is precious. It reminds me of the miracle it is to have a child at all. And it keeps me holding her close and savouring her laughter.
Last Thursday, Gabrielle had her first un-sedated echo. Up until now, her echoes have always been sedated because she has a lot of fear and anxiety around hospitals, doctors, nurses and any kind of machine. The sedation is such a pain because there is fasting, watching your child on mind-altering drugs, and then the hangover that comes as the “drunkenness” wears off. This time there was none of that. But there was a lot of talking about the doctor’s appointment before it came. There was a lot of reassuring that there would be no pokes, and that the test would not hurt.
As we explained the procedure to her, in the days leading up, Gabrielle said, “Oh, well I still don’t want to go.”
The morning of the test, she and I woke up early to hop on a ferry. She asked me if I would have to leave when she got cut open and if she would be already asleep by then. It was clear my prepping her didn’t quite work as she already had a vision of what the doctor’s appointment would entail. I assured her again that no one was cutting her. And that I wouldn’t leave the whole time.
We arrived and she liked playing with the toys in the lobby. The technician asked if she would like to come in and have pictures taken of her heart. She said in her most grown-up polite voice, “No thank you.” And turned back to what she was doing. This makes perfect sense to her. They asked, she declined. Politely. It was a very civilized exchange. But it didn’t do her any good.
She had to be persuaded with Fraggle Rock and a Popsicle before she settled into the bed and the real work could be done. The staff asked her if they could listen to her heart or take pictures, to which she would politely decline. Then they would do it anyway. That part was a bit of a shame. But they were extremely good about letting her have control over the machines. They let her put the stickers on her chest. They let her hold the stethoscope. And when she had a good scream, they let her skip the oxygen saturation test. Everything looked good on the scans. We are still on the basis that we will see how the next 6 months goes. But they are estimating her next surgery will be Summer of 2015.
As the tests wrapped up, Gabrielle looked relieved and she said, “Now it’s all over?”
I said, “Yes.”
And she smiled and said, “Now we get to go buy my bonsai tree!”
Yeah so, I told her after the doctor’s office we would get a treat. I asked her if she wanted a cupcake at her favourite cupcake tea house but she told me she would like a bonsai tree instead of a cupcake. Oh and some raw salmon and raw tuna nigiri please. Yeesh! What other kid?
The Japanese man at the bonsai tree store found it hilarious that my daughter had requested a bonsai tree. We carefully picked out which one she wanted.
But our lovely cardiologist summed it up perfectly.