I love when people see my posts on FB and then ask me questions. It reminds me I still have so many emotions and feelings to share with all of you.
The other day, I had to take Aaron to his cardiologist appointment.
When I first told people about his appointment I could see the look. “Is this a routine visit or is he going because something might or is wrong?”
To set the record straight, Aaron is fine. The cardiologist appointment we had is a 3 year follow up.
Follow up from what? Did he have an episode and he is taking medicine? No.
In September 2012, a little less than 4 months after losing Jay, I took Aaron to a pediatric cardiologist. Did we have a true medical concern with symptoms to back it up? No.
I had visited with an adult cardiologist. After he explained all the mumbo jumbo from the autopsy as well as the disease listed in the report he asked me a simple question. He asked, “Alyssa, with everything I have told you, do you have any other concerns?” I brought a close friend of mine, who understood medical mumbo jumbo, as well as Aaron with me to this appointment and to answer the cardiologist’s question, I pointed to Aaron. He then said, “Alyssa, the disease is not genetic. This said, do you still have any concerns.” Clearly the cardiologist thought I would change my answer but I again pointed to Aaron. He looked frustrated and so I looked at him and respectfully said, “You did not ask me if I understood everything you have told me about the autopsy or the disease on this report. You asked me if I had any other concerns, and I am pointing to my concern.” He nodded his head. He then referred us to a pediatric cardiologist.
What I think the cardiologist finally understood was it wasn’t about what had happened to Jay. I understood research had been done to show no genetic tie to what they say caused Jay’s heart attack. I also understood technically you cannot diagnose someone with a disease like this postmortem.
He finally understood it was about Aaron. I needed some assurance medically that Aaron was OK. He understood in order for me to sleep, I needed to have Aaron checked out. I had to do everything within my power to make sure Aaron was medically OK. He understood that as Aaron grew older his heart would break when he started to understand and realize what had happened so early in his life. I had to know I had done everything in my power to understand what I could not see and have evidence his heart was normal. I had to be able to look Aaron in the eyes and tell him he was physically OK.
As Aaron went through the tests the other day it was only once or twice he was impatient and cried a little bit. The nurses kept telling him this was not a dr. appt that would hurt. They just wanted to listen and take a look at his heart. It is one of these moments I held his small little hand and said, “baby…they just want listen and check out your heart of gold. It’s going to be just fine sweetie.” Deep down I held in every emotion I was feeling. I could hear myself asking “Why is she taking so many more pictures this time?” “Why is this test not done yet?” “Are they hearing something wrong?” “Can I handle it should he need some kind of treatment?” I kept them all inside, tucked underneath the hope and thought that everything was going to be fine.
When the tests were done we were sent to our room to wait for the doctor to review the results. Some of the longest minutes of my life. As Aaron found the toy to play with in the room he started telling me the colors he saw and plopped down on the floor to play. I found myself thinking, “This is the same room as 3 years ago, that has to be good right?” “What is taking them so long to review the results? They must have found something” And ultimately I forced myself to say “Alyssa…get your shit together here…things will be what they will be…you got this…be the mom he needs, not one who is falling apart.” Nothing like getting real with your most inner emotions and feelings.
When the doctor walked into the room, I tried to read every mark on his face. Was he about to give us bad news? Was he about to tell me everything was great? I begged to have some glimmer of warning to what was about to be revealed. Nothing. Doctors are good at this. The first thing he did after giving Aaron a high five and shaking my hand he asked, “So how are things going? How is Aaron doing? Is he keeping up with the other kids around him? Is he short of breath or passing out?” I thought to myself, “Oh good grief, he is asking me questions…what are the answers?…the true answers…he sometimes trips but I mean if you had seen his dad’s feet you would understand…he is 3 almost 4…what do you mean how is he doing…he is a question answering lovable 3 year old who loves epalators (that is elevators for those who don’t understand Aaron speak) , is that normal???” I opened my mouth and gave him the answers. After a little back and forth between us he looked at me smiled and said, “everything looks normal and sounds great.” He must have known after my reaction, that is all I needed to hear. I held back the tears of happiness. I smiled and we talked about when we would follow up again to make sure things were still perfect.
We had made it through tests and through hearing the results. As Aaron and I walked out the doctor popped his head out of his little desk area and said “I have one suggestion for you…” I instantly thought to myself…”YOU ARE GOING TO TELL ME SOMETHING BAD IN THE HALLWAY???” He smiled at me (probably having seen the panic in my face) and said “Don’t change the “epalator”. It will soon be gone and you will be sad. Enjoy it while you can.” In that exact moment, this extremely intelligent pediatric cardiologist became human to me and a man I hold close to my heart as the man who helped me see what I couldn’t see and that was that Aaron’s heart is physically fine.
So as we left the doctor’s office, I walked with Aaron hand in hand knowing his heart looked good. And as I drove to work I thought back to the doctor appointment and even after the tests the nurses had done on him, I had asked Aaron what we do when someone helps us. He looked at me and walked up to each nurse and gave them a hug and blew them a kiss. As I shared Aaron with my co-workers for an hour while I worked I watched him hug almost all of my coworkers and blow kisses as we left.
The tests show Aaron’s heart is healthy. This is great news. What is most important is Aaron has something the tests will never show…a heart of gold.