Well to answer your question…actually it’s real close to what you would see in the movies. So you are standing there in the hospital room chatting it up with the grandparents waiting for the phone call in which they say, “she did very well and she is in recovery. We will be bringing her back to the room as soon as she wakes up.” I mean…how many times have you been through that if you are over 40?! You almost don’t break stride in your current conversation to listen with one ear to the well-rehearsed “she’s ok speech”. There is almost a pregame celebration going on because you are so cock sure of the end results.
If your question is, “What was your reaction after the diagnosis?” then you already know that’s not how that day went for Makenna, her mother or myself. To see her doctor walk in the room before getting the call was not as much of surprise at first as it might should have been. You see her Surgeon is a family friend. Heck, I coached his son in baseball. So for him to be showing up was a little Lagniappe (Cajun word…look it up) that you expected from the Doctor who was your friend first. A little personalized experience from your bud. You don’t need a phone call…the Doc told them he’ll deliver the good news himself, “I got it…I know these guys”.
So he was greeted with smiling faces. From me because I knew him. From the others…well…because I knew him. As I walked towards him to warmly grasp his hand and pat his back with the other, it dawned on me that he was off color and he looked nervous. In a matter of seconds I realized that there was something wrong. His face was anxious, his eyes were darting around the room trying to figure out who everyone else in the room was. It dawned on me that he was assessing the room to determine if it needed to be cleared from visitors before he proceeded with what he had to say. We stopped in mid-stride and locked eyes and in that moment I took a chance and said, “That’s my parents, you can talk in front of them.” From start to finish, that whole scene took about 16 seconds and the camera tunnels into black while he says. “We’ve got a problem.”
“Makenna has Cirrhosis of the Liver and we don’t know why” were the words that changed all of our lives forever. 3 weeks and about 3 doctors later, her Gastro doctor (another old friend of mine) has us in Nashville with a fourth Doctor at Vanderbilt University to confirm the local Gastro’s diagnosis of a very rare genetic disease called Wilson’s disease. I guess for the first month or so, we were in so much of a blur trying to find out what was attacking her liver that we didn’t have much of a chance to have a reaction. I mean it felt like that after the Surgeon uttered those first shaky words, everything went into hyper speed. What is Wilson’s? Is it curable? Will she have to have a liver transplant? Of course all of these things are racing through your head… but for me, I didn’t dare focus on any of them in hopes that if we didn’t talk about it, it might all just go away. I mean this is not real right…she had gone into the hospital for a routine gall bladder surgery. Those first few weeks was my first experience with the well-worn but very appropriate cliché “This is like a bad dream”.
Then on to the next worn out cliché…the old, “Why her?” barely a nose ahead of, “Let it happen to me Lord and not her.” The reason all those phrases are cliché is because they’ve been thought, felt and used in earnest since the first set of parents learned their child was seriously ill or wounded. There is simply no better way to verbally describe the anguish a parent feels when a child’s life has been threatened.
You’ve asked me what my reaction was after the diagnosis, but I don’t think I can answer that question yet. It’s been 7 months and to a certain extent Makenna’s life is somewhat back to normal…I think I am still reacting. Makenna is a different person. She’s had to grow up quick and she was singularly better equipped than most to do so. Her mother and I spend a tremendous amount of time and energy trying to make sure she doesn’t grow up too fast by making sure that everything that can be done to make her life as normal as can be expected has been done. That includes a precarious balance between keeping life as carefree as most 17 year old girl’s, while at the same time making sure she understands how serious her condition is as we prepare her to go off to college where she might have to explain all this to a doctor without either her mother or me around. Having absolutely no experience with any of these kinds of issues, you would think navigating all this would be terribly difficult. Not with Makenna at the center of the stage.
Ask any of her friends and they will tell you that most of the time Makenna’s reaction to bad news about herself, first and foremost is to be concerned about how everyone else is handling it. That’s just the way she is. When you see your child responding to personal crisis with patience, poise, faith and positivity, it’s hard to have a negative reaction yourself. When she starts wanting to use her condition to help others…well it darn near makes it impossible. Darn near that is…Oh I still have those moments where tears burst loose seemingly out of nowhere. But they are 90 days apart now. Why 90 days? Because that’s when her prescriptions run out and she has to go back in for testing. Getting back into the ever frustrating healthcare system and waiting for results of those test seem to bring a little of the panic back again, but as she has gone through this cycle a couple of times it also seems to get just a little bit easier each time.
As her time with this diagnoses increases, it seems so does her comfort level with it. I guess it’s all about what you get used to. One thing that has helped us all dramatically is her faith. I guess we didn’t know specifically how it would affect her life when we were pulling up to the church all those times but it seemed like something that had a possible great upside to it. Least you think we pat ourselves on the back for making sure she grew up in a Christian household (and she did)…you need to know that eventually that household would also be affected by a divorce between me and her Mom a couple of years before she was even diagnosed or even having any visible side effects to the illness. For Makenna, even having gone through some difficult times, she just never got to that age when believing and trusting in the Lord was uncool. From a very young age she took it all seriously and has NEVER been afraid to proclaim her faith. She is very much so a normal teenaged girl whose feelings can be hurt, who can say things she shouldn’t have and who never cleans her room without threats. I guess her Spiritual maturity did take a boost in the face of great odds and you might feel that anyone would start praying after that kind of news. But I think the secret to Makenna is that it didn’t take much of a boost. Her Faith seems to be much the same today as it was before the diagnosis. I can’t speak for anyone else, but watching my daughter handle the diagnosis and deal daily with the results of it has been a much needed inspiration to me. I know…another cliché. But it has. It is a very humbling experience to be schooled on how to handle crisis by your own daughter.
Ok, so what has been my reaction to the diagnosis? Today, I would say it is a weird mix of thankfulness, pride, feeling blessed and yes all that mixed with fear. Thankful for all her doctors, for my company’s willingness to participate in the cost of her medication, and for her boyfriend Michael’s influence in her life. Proud of the young woman she has become through all this and the woman it’s clear she will be. Blessed that her condition was found when it was and that there is even a medication for it now (until recently there wasn’t really one.) Blessed by family and friends like one of her best friends Kendall, who has helped her navigate the tricky life of a teenager who can’t drink and blessed by Makenna herself. As far as the fear goes…throughout my life, I have not been very consistent in trusting in God to take care of things but in watching Makenna, I feel like I am learning from a pro.
By: David Adams