I had second thoughts about ever posting this. Jim and I talked about it. He agreed that it’s absolutely honest, but maybe too honest. We debated whether or not it needed to be written for others to read as it concerns telling myself the truth. We wondered whether it was necessary to put my truth out there for others whom it may hurt. I was considering leaving it forever in the draft folder until I read a comment exchange on Facebook. The comments were about an article about Emily Rapp, who I’ve written about before, and the recent loss of her son. The comment string was this:
On my path to a healthier state of being through inner peace, I’m learning to meditate to alleviate my anxiety. I’m doing this so I don’t become dependent on xanax and wellbutrin to deal with my life. The outcome of my medication/meditation combo, is that my anxiety is more defined and less cloudy, more solid and less pervasive. This is good because I can now identify the anxiety that manifests at the bottom of my belly as growling self-doubt and ancient residue of the sense of absolute worthlessness that I wallowed in for most of my adolescence. The lower body anxiety is easier to deal with, to let it go and move through it without filling those ancient potholes with food. They are hollow echoes of a time when I didn’t know who I was. I’ve finally learned, I’m not hungry, I’m anxious. I can sooth myself with loving kindness instead of carbs, yay me!
However, there is also the twisting pain in the right side of my chest that pulls on all my muscles and suffocates me. I also know what that is, and now that I see it more clearly, it is apparent why I’ve been so scared, nervous, terrified, and, well anxious for so long. I already knew this ever evolving relationship between my son Liam’s ownership of his health burdens eclipsing my time to carry his burden was part of my anxiety. I can’t hide those fears from him because they are his own to bear, they are literally inside of him. It is Liam’s birthright to confront and deal with his own birth defects.
Unfortunately, transferring the ownership of Liam’s burden is not the only thing I was tamping down with cookies, cereal, candy, or any other food I could consume for the past two years since completing Heart Warriors (or in the six years that led up to writing it). What has driven my more recent spiral into absolute anxiety is a reality I could no longer deny after I wrote Heart Warriors. I’ve been avoiding it with food and ambition, but now that I’ve set aside those soothing distractions, the ultimate fear is staring me in the face.
My reality is that unless something drastic happens in medical technology, and it happens relatively soon in FDA time, the day will come instead when, Jim and I will watch our son die. The day will come when Moira will become an only child. Unless some huge medical innovation comes along before Liam’s organs start to fail, or just in the nick of time, his time is limited by his heart defect and half-hearted “correction,” which isn’t really corrective. Transplant is an imperfect and unlikely alternative given the risks of transplant and the lengthy wait for his blood type.
A huge part of my healing is honestly facing the reality of my life and to stop evading the feelings by eating, oh lets say an entire bag of dove dark chocolate hearts in twenty-four hours. My temporal reality is that Liam’s lifetime will fit within my own, like a nesting doll. The extraordinary probability that I will see my own child’s beginning and his end shreds my soul. It’s shredded my soul for ten years like a rat burrowing in a nest. Now through meditation and reflection I’ve shown a light on that damage. I am so terribly damaged. I simply am.
I’m not supposed to admit that, so I’ve been filling my face with food and shouting from the rooftops about CHD awareness and research instead. As his mother, it’s taboo for me to admit that I know he faces a premature death within the current shape of our medical landscape. I’m not supposed to yield ground to those facts. Even the people who REALLY know, the cardiologists and surgeons, will admit it when pressed. They can’t lie. They always hold out hope, but there are no resounding promises. When pressed on the facts about liver dysfunction and other long term complications with the Fontan, they yield to the truth that I’m finally facing.
The cruelest irony is that all the ground I’ve covered fighting this battle has taught me so much – too much to deny what is likely to happen. Sure, if he does extremely well, it might not happen until he’s 40, but there is no good age to lose a child, and Liam’s track record with complications falls far short of ideal. I’m not supposed to own that. As a mom, I’m supposed to stay firmly rooted in denial, but denial is destroying me, physically and emotionally. Unless I recognize this one truth, it will continue to tear me to pieces. Yet facing it drives me to tears. I’ve been crying for days now.
I’m not bereft of hope, but I can’t deny the facts as they emerge before my eyes. Liam can’t live on hope alone. I’ve fought and I’ll continue to fight today’s truth with fundraising, research, effort . . . so much effort. I will always fight to save Liam, but now I admit and am trying to accept that I’m most likely on the losing side of this battle, how do I hold that burden for Liam? I cannot keep it from him forever. He’s already aware that he “could” die from his “special heart,” but we’ve never discussed that he probably will. We won’t for many years. This whole reality is the ultimate taboo. This is the hardest part. This is what happens when I let my thoughts manifest without judgement or tampering.
This is where meditation and a zen path to inner peace has led me. It’s ugly and it’s brutal. It’s not fair, it’s not right, it simply is. It simply is. In the presence of the present I offer myself loving kindness, and I say a mantra of hope for Liam’s happiness and health. I continue to hope, but it is an informed hope. It is a hope that acknowledges I’m doing all I can and truly accepting that it may never be enough.
The truth is, I’ve only shown my strong side for so long. My right leg strident and pulling me forward into battle is what people see and what I allowed myself to see. What has been hidden is my left leg limping along, clinging to the past, always falling behind. My left leg lags with fear of the future and the footfalls of my life are uneven and unbalanced, one too far ahead and one too far behind. To find balance and to truly live in the present, all thoughts must be recognized, all truths revealed. My pain and fear cannot be buried with food. My stridency is only a pretense to compensate for how broken I am by the path I must tread.
Then, at my lowest low, as if the universe and higher power is truly listening to me face down this monstrous fear, this author interview (‘Frankenstein’s Cat’: Bioengineering The Animals Of The Future) played on my podcast when I worked out over lunch. I’ll share this quote:
“. . . scientists are now really focused on pigs, largely because their organs are about the same size as human organs and there are already some very successful procedures being done. It’s somewhat common now to receive a valve from a pig heart in certain heart operations. But scientists really want to be able to transplant whole organs, not just a heart valve from a pig but, say, a whole pig heart into humans. There’s a huge shortage of organ donors worldwide, so scientists just imagine that if you could have these pig farms that are just growing organs constantly, it might save a lot of lives. The problem is … rejection. It just shows the potential of if we can re-engineer an animal’s body, we could potentially engineer it so that it creates these perfect replacement parts for humans.”
You have to actually listen to the interview because the transcription is incomplete, but the author goes on to explain in response to this question that scientists are trying to bio-engineer a particular sugar from the lining of pig hearts to make them less susceptible to human rejection. So, a possible organ shortage solution is growing in labs and in pigs right now.
This crazy book with a catalog of weird-but-true bio-innovations held within the shocking menagerie of tusked mice and fluorescent fish, a sparkling hope that “Some Pig” (shout out to Wilbur for and from his biggest fan Liam) will come along and save my child’s life. And thus bolstered, I can face the full force of my fear, not yield to a bowl of chocolate, and be buoyed from drowning in the depths of my soul because, my dear friends, hope snorts.
Amanda Rose Adams 