Last year, on one of my mom's random visits to South Florida to spend time with her grandson, she brought Jonas a copy of Follow That Bird. If you're a child of the 80s like me, you remember this tale of Big Bird and his cross country journey of family and acceptance. Jonas immediately fell in love with the movie, and (like any good toddler that's fond of a routine) wanted to watch it on a loop.
Fast forward several months, and we're on a car ride. I could hear him singing in the backseat, so I turned down the radio to hear if he was just chatting to the song. Much to my surprise, I hear him singing one of the songs from the movie: "Eaaasy goin'. Laugh...cares...way. Easy goin' day".
What a fitting and appropriate song to be one of the first he learns. Jonas's life may have started far from "easy goin'", but strangers and friends alike often remark on what a happy child he is.
I try my hardest to remain positive, especially when it comes to Jonas's health. He recently had a bi-annual check up with the cardiologist, and the weeks leading up to it were absolute torture for me. Jonas is not "sick" by any stretch of the imagination. But he does need one more surgery to complete the re-routing of blood flow from his heart to the rest of his body. Many kids with Hypoplastic Left Heart Syndrome have the final surgery, called the Fontan, as young as age 2. I was dreading Dr. Flores would at least want to schedule him for a catheterization, to see how his function was holding up.
I am ecstatic to report I was just being a worrisome mommy. Dr. Flores assured me that Jonas was extremely healthy, and she wanted to wait until he was 4 years old to schedule the last surgery, as long as he remained in good health. Jonas climbed up into the chair next to me in her office, and she remarked: "Look at how fast he climbs! I know heart healthy children that aren't as fast as he is!"
This visit was exactly what I needed to calm my fears. I know the final surgery is inevitable, but to hear Jonas is doing so well is reassuring. Jonas has endless amount of energy. He is a daredevil risk taking toddler, with not a care in the world...which is exactly as it should be.
I am just so afraid at times. I guess this is normal for all parents, to be (sometimes obsessively) concerned about their child's health and safety. I try not to get ahead of myself. It's important to take this one day at a time, because looking into the future is stressful and frightening.
For now, today, Jonas will laugh and play. He'll tell me stories about the cats, request his favorite albums (Weezer's Green album and Joel DaSilva and the Midnight Howl) and get a quarter of the way through the alphabet, not realizing his skips the letter "E".
I just have to remind myself to live in the moment, and enjoy each precious hug and kiss from the sweetest boy I know.