When I was pregnant with Jojo, there was a drama of the heart. At the 20 week ultrasound, the radiologist saw something abnormal in Jojo’s heart – an enlarged aortic valve. I was to fly to New York that evening for work. She recommended I cancel my trip and get an echo-cardiogram straight away. An hour later I was with the cardiologist. He thought Jojo had a bicuspid aortic valve. This is the most common congenital heart defect and most that have it don’t discover it until much later in life. It didn’t require intervention, blood was getting pumped around as it should. They repeated the echo every 6 weeks until Jojo was born to make sure nothing worsened. This heart drama landed Jojo in the NICU for the first couple days of her life, and at six weeks of age she got an echo-cardiogram directly (rather than through my womb). Her heart looked and pumped blood completely normally. It has been a false positive. The explanation was that technology has improved so much, details that couldn’t been seen before can now be seen and that ranges of “normal” haven’t been calibrated with this new precision. By new standards, the aortic valve wasn’t enlarged.
We didn’t figure out the hypotonia with Jojo until 5 months later. Because the heart is a muscle, she gets an echo-cardiogram every year. Her heart doesn’t have the weakness her limbs and trunk have. And how strange that she has a genetic disorder that in most patients causes heart defects. Jojo doesn’t have the super common heart defect she was suspected to have. And she has the rare genetic disorder that can cause heart defects. Is this a profound coincidence? Or did that first cardiologist see something – a minor benign enlargement that is caused by AKS?
Maybe because of all this, I’ve had Jojo’s heart on the back of my mind her whole life. Longer really, since before she was born. And maybe it this that sent my mind to create a story of Jojo and her weak muscles and strong heart. I didn’t set out to create a story, It was more out of necessity.
Jojo has some pretty strong opinions. She likes what she likes and she doesn’t put up with anything she doesn’t like. She has a scream that can stop traffic. Temporarily make the hearing deaf. Turn every head on the playground, in the grocery store, at the restaurant. One thing she likes is books, and she is very strict when it comes to book selection. What she likes best is to open books, flip through pages, be a little destructive. When I read to her, there is usually only one book in rotation and it must be that book. She’ll have certain pages she favors and she’ll require that I read that page over and over.
Some nights though, when it is bedtime, Jojo doesn’t want to read or do books. Sometimes, she is very upset after being pulled from the bath, having a diaper change, getting her teeth brushed. These are the things she doesn’t like. Doesn’t put up with. She screams and cries and makes her despair known to all. We sit in the rocking chair rocking, me patting her back and singing. She snuggles in, calms down, and readies for bed. This is one of my favorite moments with Jojo – the calm after the storm.
Of late, my singing has moved from the category of things she likes to the things she does not. On a particularly despairing night, when my singing caused louder screams, I started talking instead. In my most soothing voice. It started out with simple phrases: I love you, it will be ok. Then I started telling a story. I have invented a lot of songs about Jojo, so I suppose I was in the habit and I started telling it without really thinking.
Once upon a time, there was a girl who was born with a very big heart. It was so big that in order to beat, it needed a lot of strength and a lot of power. Way more than any other little girl’s heart. So her heart borrowed power from her arms and her legs. It borrowed from her fingers and her toes. From her back and tummy and lips and tongue. It borrowed power from her mind. Her heart beat loud and strong.
The little girl’s body was tired. Her legs couldn’t walk. Her mouth couldn’t say all the things her mind thought. Her heart said “little girl, I am so strong and I have so much love, you will be okay.
One day the little girl’s mom was sad. The little girl thought “I want to walk to mom, climb in her lap, and give her a hug”. Her legs wouldn’t walk so she held her arms up to her mom. She thought “I want to hug you” and her mouth said “Up!” Her mom picked her up and they hugged and it felt like two puzzle pieces that fit perfectly together. The mom’s heart filled with love and her sadness faded away.
The next day the little girl’s brother got hurt. He tripped and fell and cried and cried. The little girl scooted to her brother and held up her arms. Her brother hugged the little girl and was filled with love. His tears dried and his hurt faded away.
The next day, the little girl’s dad was worried about all that has been happening in the world. The little girl held up her arms. Her dad picked her up and hugged her and was filled with love. His worries faded away.
The little girl thought “thank you heart, for making mom and brother and dad feel better. Thank you for being strong.”
Jojo The Strong 