I have spent a lot of time in this blog referring to “that man” as “my soon to be ex” or “him” or “Jack’s father” and it has always irked me that I have had to be so clumsy in my writing in order not to name him. I will still not name him here, because even though he is a baby-abandoning jackwagon, I don’t want to compromise his life by writing about him by name in this forum. Most of you know us personally, and you know who he is, and those of you who don’t know us personally won’t lose any of the story by not knowing his name. In any case, I have decided to create a “nom de code” for him so that I don’t have to expend energy trying to hide his true name. I thought of several derogatory names, but I think Jack may find this blog some day in the future, so I don’t want to be unduly harsh. I will just call him “LK” for no other reason than that those keys are conveniently located near one another on the keyboard. So….. Moving on…..
Monday found us, bright and early, at the pediatricians office for Jack’s 15 month check up. “LK” was supposed to be there for our 9:30am appointment but by 9:40am he still hadn’t appeared. I kept telling myself not to call or text him, that if he wanted to be there, he’d make it happen. That I was no longer responsible for making sure he took care of the important things in his life, that I don’t work for him anymore. But that’s not me. So I texted him and asked if he was coming. He replied that traffic was bad and he was almost there. Now, we live in the metro-Atlanta area. Of course the traffic was bad, nimrod!! Leave earlier!!! Breathe…..
I told him the exam room we were in and waited for him to arrive. When he did he noted how amazing it was that we were already in a room and hadn’t been kept waiting for the doctor. That is one amazing thing about raising a child with a congenital heart defect. They are so susceptible to infections that we are never left in the waiting room of a doctors office for fear of infection from the other children. It’s a perq that I would gladly trade for a healthy child, although I appreciate the gesture.
When the doctor came in, she was followed by a medical student, which is par for the course when we visit any doctors office. Jack is quite a rare case. Actually, any baby with a heart defect is an exciting learning opportunity for those in the medical field and this student was hanging on the doctors every word. When the doctor completed her exam she asked if the student could listen to Jack’s heart and I consented. The student asked me to describe the defect, and as she listened to the murmur, her eyes grew bigger and bigger. This happens every time. The doctor used the familiar terms to speak to her and explain the condition and the anatomy and I just sat knowingly. The doctor told the student that while Jack had a massive murmur, as long as it didn’t sound like a horses gallop (the cue that heart failure was beginning) that his heart was doing okay.
“LK” on the other hand was unfazed and began asking the doctor questions. He had heard her extol Jack’s growth and appearance and just wanted assurance that Jack was healthy. He actually said “So he’s doing really well? He’s basically a healthy, normal kid?” I immediately stiffened and raised an eyebrow. I have been telling “LK” for two years that Jack is not a healthy normal kid and that he would always be at risk, but he still doesn’t believe me. Or maybe he doesn’t want to believe it about Jack. I’m not sure which. To my extreme satisfaction, the doctor also stiffened and set “LK” straight with a direct and stern response confirming that Jack was healthy, and really quite lucky, given his condition. But that he would never be “normal” and that he would always be at risk for heart failure and infections or sickness that would put him in the hospital. She told him that Jack had a “repaired” heart, but that it would never be “fixed” and that he would need treatment his whole life. Ahhhh, satisfaction, vindication, what? Not sure, but that made me happy.
“LK” texted me later and said it was really “eye opening” to go to the doctors appointment and hear about Jack’s growth and development and that he looked forward to meeting with the cardiologist. I took a moment to breathe before I responded, and marveled at how a man with a masters degree in engineering could be so daft in understanding the condition and care of a child with a severe congenital heart defect. Not “a child” dammit! His child! And then I realized that I wasn’t feeling anger, but disgust, and pity. It is so very sad that he missed so many of Jack’s medical milestones and doctors visits. I know Jack so much better than “LK” does, or probably ever will and while “LK” has a freedom that I may never know again, I have a bond with Jack that “LK” may never develop. I think I win out there.
I have seen Jack’s heart on ultrasound over 30 times and saw his right ventricle thin and begin to improve pumping function over the course of his first year. I “fed” him his first meal (via feeding tube) and I placed, removed and replaced feeding tubes so that he could continue to grow. I was nearby each and every time that Jack’s heart stopped, or that he stopped breathing and he had to be resuscitated. I measured his oxygen saturation levels for six months and I have monitored his skin color from the moment he was born for indications that his heart or blood flow were compromised. And on two occasions that led to hospital visits and confirmation that he was in a very early stage of significant distress. I listen to his heart so often I sometimes wonder if I’m not doing it just to make sure it’s still beating. As some sort of comfort.
I am tethered to and, some may say, “trapped” by the heart condition that Jack has. But it has been so much more a liberation and a blessing. I have been given the opportunity to realize the deepest, most loving relationship I have ever known and I am a more loving, compassionate and caring human being because of it. It is absolutely not fair that Jack has to have this defect, and I still rage and sob with pain over his bad luck. But I believe that, given how well he has done, that he is destined for great things. God, or the universe, or however you describe the great planner, has placed Jack on Earth, and me as his mother, for the express purpose of bettering the world. I can attest that he has already made me a better person. I am hoping and praying that he will work his magic on “LK” next.