Walk As Lions

I don’t remember when or at what age I stopped keeping track of my birthday adventures. As a kid I could recite back every birthday celebration from every previous year. A few still stand out in my mind like my 8 yr old princess party,  traveling as an unaccompanied minor to visit my grandparents for my 10th birthday, or my joint “sweet sixteen” slumber party with my BFF. I also particularly remember my 24th, 29th, and 30th birthdays. Somewhere in there though, the rest of them become a blur.

Last year I spent my 35th birthday with my BFF when her husband so generously flew me (and 5 month old Elijah) to NY to celebrate her 35th birthday (a few days before mine). It was such an amazing time that I will forever be grateful to both of them for.
At the time I certainly did not anticipate how this year’s birthday would be spent. I never imagined I would be pregnant again, much less in the current situation we find ourselves.

This year on my birthday I attended an early morning fetal echocardiogram. Danny and I then spent another hour or so meeting with the cardiologist who will follow us locally when we’re not in Denver. I went into the appointment with a faint glimmer of hope that they would be like “surprise! Things are looking better!” Alas, that wasn’t the case, if anything, things were slightly, just by a hair, worse.

The doctor didn’t tell us anything we hadn’t already heard, we simply rehashed it, and he gave us time to ask any other questions we’d thought of. Unfortunately no one has answers for the questions we have. When will we be able to hold him? Will he be able to breastfeed? Will he need to be on oxygen?  Will he do ok at this altitude? Will he have complications? Will he live? Will he thrive?

The initial outlook is surprisingly good. The doctor told us to look at it like this: getting through the first surgery is the hardest part then the first month in the hospital and getting home are the biggest hurdles. The next hurdle is the first six months and getting through the 2nd surgery. Then after that things usually smooth out until the 3rd surgery. From there, many kids live relatively normal lives.

But then it starts getting hairy again. The working right side of the heart that Jonathan has is intended to receive unoxygenated blood from the body and pump it to the lungs at a low pressure. The left side of his heart that he is missing does the job of receiving oxygenated blood from the lungs and pumping it at high pressure to the rest of the body. The goal of the 3 surgeries is to replumb the heart so that the right side of the heart does the left side’s job. Essentially the unoxygenated blood will bypass the heart and go directly to the lungs. The right side of the heart will then receive the oxygenated blood and pump it to the rest of the body. Therefore you have the “low pressure pump” doing the job of the “high pressure pump.” This extra work on the heart can cause people to go into heart failure at young ages like 40 years old, 20 years old, even in the teen years.

I’m not going to lie, that’s a hard pill to swallow. I’m 36 and Danny is 40. Those ages sounded so old when I was 18 but it feels pretty young now. We have babies for goodness sake. Life is barely starting! Obviously it’s not an outcome that any parent wants to hear for their child.

In reality, there are so many tragic things that can happen to a parent’s child, during their lifetime: car accidents, addictions, disease. All of these things can unexpectedly shorten or decrease the quality of your child’s life, at any time, any age. I suppose if I had to pick I’d rather my child have a quality life in the time he has than grow up to be a drug addict who never finds peace or happiness.

I guess this is a bonus that we now have that perhaps other families don’t have. We will have to first learn ourselves, and then teach our children to live life to the fullest and take joy in every moment. I’m reminded of a line from Thornton Wilder’s Our Town.

“Oh, earth, you are too wonderful for anybody to realize you. Do any human beings ever realize life while they live it–every, every minute?”

Perhaps Jonathan’s life will be short, but perhaps any of our lives will be shortened. There are no guarantees.
I hope I never take another second for granted. I hope to teach my children not to take one single moment for granted. I think that’s what it means to live a life with no regrets. Not to live carelessly and recklessly, refusing to learn from mistakes because YOLO (you only live once) nor to live so cautiously as to the pursuit of no passion; but to live every moment of sorrow and joy, taking it in fully and wasting nothing.

“If you are not afraid of dying, you will not be afraid of living.” –@pastorbrady