Hope Snorts

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:

  • Janelle Patterson Are you [Huffington Post’s Parenting FB Feed] going to keep reposting this? It was enough to see it yesterday. I’m not on fb to read depressing stories, repetitively
  • Katherine Eagerton ^ Wow. Good thing you’re not a grieving mom then heh. If you think it’s a depressing thing to see posted, you should try thinking about what it’s like to LIVE this life as a grieving mom.
  • Janelle Patterson Wow no thanks. Reading it makes me stress and worry about my kids, sorry if that offends you, bitch.
When I read this, I decided I would post this post.  I know it’s going to be upsetting for people, but a full life is not all sunshine and jelly beans.
If you’re a heart patient or heart parent, especially those dealing with a single ventricle heart, this may be way too much for you, so proceed with caution, yet take heart, hope snorts.

Pig_USDA01c0116

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.


13 thoughts on “Hope Snorts

  1. You knocked this out of the park. My son, Colman, has HLHS and is eight years old. All of his surgeries went perfectly, except for a long recovery with the Fontan. Then he went into heart failure July of 2012 and was diagnosed with Plastic Bronchitis (because of his Fontan circulation). I have always lived with the knowledge that I will, barring some accident, outlive him and it’s heartbreaking. To look at my three sons and define them in that way in my head. These two will do blah, blah, blah and that’s the little guy I will bury. I try to live day by day, moment by moment. That’s the only way I can find the real joy. I know all too well what his future holds, and it’s mostly devastation. He’s a strong little guy and he’s taught me so much.

    Thanks for posting. 🙂
    Heather
    http://www.crazyheartmama.com

  2. Please look into MTHFR gene mutation and work towards getting it tested routinely. Please look at Katherine Westrom’s work At Vanderbilt. Also, regenerative research in Pittsburgh-taking the childs own muscle stem cells and repairing the heart while in utero. Also, plant stem cells,

  3. So – I don’t know what you are going through, can’t even begin to understand and though I feel the sense of despair for you I had one overwhelming feeling. You will be there for your son, whatever he goes through, and that is an incredible gift to him. You will give him peace thought it will be in your pain, and that is what I believe our mission as parents is in this life. A bit on the reverse I have had to go through watching my kids’ pain as they have watched me go through breast cancer. We don’t want our kids to hurt, ever. but the reality is that hurt and pain are real. What gets us through is Faith and Love. I tried to teach my children that all will be okay if we trust God to get us through and though sad it may be we will smile again. My heart breaks for you. Sometimes the only way to get through something is to look at it in a different way. You may have been in this world to help this child go from one life to the next, from one world to a better world. It is your mission in life, I believe, and if you can look at it as such maybe your pain will take on another light and you can look on this as being what God needs you to do while you are here. Again – it is easy for me to say knowing that I am not facing what you are, however I believe that mothers can do anything for their children and you can change your perspective to make your family’s experience the best it can be and that means you must stay strong and in charge of the health of your family. Do not give other people’s negative words even an ounce of your energy – you don’t have it to spare! Prayers for strength and wisdom – and in taking care of your son and family, take care of yourself too!

  4. I have just learned a couple of weeks ago that I have MTHFR and was told by the expert that it could be why the infant is suffering and I am a nurse so I did some research and Pittsburgh research scientists are doing amazing research in epigenetics. She is 7 1/2 months pregnant. We are praying for a miracle and looking for maverick docs that would have the courage to look into taking muscle stem cells and injecting into the babies heart to regenerate the heart muscle. There is amazing research at the McGowan Center in Pitts. There has been so much research on methylation and methylentetrahydrofolate reductase that I can’t believe more hasn’t been done for prenatal care in this area esp. with the potential results. Please look into this. Thank you.

    Sincerely, A mother and grandmother who cares, Darlene Marie

  5. Hi Amanda,
    You nailed it again. You have an awesome ability to distill the thoughts of hundreds (or thousands) of us heart parents.
    Thanks,
    Bruce

  6. I face the same reality and have for nearly 10 years. I feel frustrated at the knowledge that I am trying to dodge that same reality, that I too will one day bury the most beautiful living being I’ve ever met way too soon. To deny is to make it through the day, to acknowledge the truth means days in bed in despair and devastation. I’ve held him in my arms feeling him struggle to breathe, gasping for air and turning blue. I’ve heard his voice in my head telling me he can’t do it anymore. I’ve seen his pupils blown and his body lifeless. I’ve seen my baby boy 7 times laid open like a dissection experiment in science class seeing his heart beat through a sheet of plastic. I get frustrated that no matter how much I describe what I am and have gone through no one else gets it. Save for other heart parents. No one gets what its like to be frozen in fear fully expecting that this time is the time hes really going to be gone. What it feels like to ride the roller coaster of not knowing if he’ll live today, next week. The blur of doctors and nurses running in and out trying to save him again. The shock of taking him home and watching him be a boy and not knowing how to back track on the grief and the loss that was expected. I get it Amanda, I get it.

  7. Thank you Amanda for once again putting my thoughts and feelings into words. It is a scary and harsh reality, but it’s our reality. It is extremely difficult to admit and even harder to live with. We just have to keep hoping and praying otherwise we will go crazy. (((HUGS))) and love to you my friend ♡♥

  8. My dear friend Amanda, You and your family are such a wonder in our community and we are all much better people having you as part of our lives. It breaks my heart what you have had to endure. Liam is such a special little boy with such excitement in his eyesand we all love him so very much. Moira is such a sweet angel, with such a spark of life with every beautiful smile! You and Jim, Liam and Moira, are all in my heart. I so understand your tears and I hope you can feel all our arms wrapped around you.

  9. Amanda
    Thank you so much for sharing that with all of us. Everyday I look forward to coming to work to look into Liam’s sweet face and start my day! I am blessed to be his teacher this year. You and your family inspire me to be a better mom and person everyday!

  10. Amanda – am just now sitting down with the chance to catch up on yourposts. Wow~ As several others said, you put our feelings, our thoughts, our worst fears and terror into words. I pray every day for medical technology to hurry up and develop heart transplants without rejection, as we know the chances are very good Caylen will have to have one. Doctors like to say our kids are doing well, and will continue to do well in the future, but if pressed they admit they don’t know, and have to bow to the statistics (or the lack of them for the very rare kids). Reality is many, many of us heart parents will have to watch our children die before us. Thank you for putting your heart out in the open, for opening the wounds to share with us. At least for me, it helps me face my fears instead of burying them.

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