Death Without A Diagnosis – A Mother Describes The Moments of Losing Her Son at Age 5 From an Undiagnosed Rare Disease

June 29, 2012

Cal’s Story

My son Cal had been battling an as yet undiagnosed disease for three years. And now at the tender age of five, he was succumbing to it at our home under hospice care. On the morning that Cal passed away, there is not much I remember and yet what I can recall is a jumbled mess of images, sounds, smells and emotions.  But what I do remember very distinctly is the inner turmoil that was raging in my heart, mind and soul as I held my son in my arms during the last hours of his life.  It was as if I were detached, a spectator to an internal debate taking place within my own body.  My heart and mind were at odds with each other engaging in intellectual and emotional warfare while my soul sought to solace them employing trust in God that Cal would be saved and faith that there is a heaven where he would be lovingly received and healed.

 I know that God put Cal in my hands because he knew that I would do something about it. – Heather Pacharzina Long

Shortly before Cal died, I was sitting on the couch in our living room with him cradled in my arms, lying upon my lap, holding his head close to my breast not wanting to let go of him for even a moment.  As I said, almost everything about that day is a blur.  However, I remember looking up at one point to discover that our home was full of people.  People who loved Cal and who had come to say goodbye and they were gathered around Cody, Emily, Cal and me.  It was a very surreal experience that has left me with a lingering numbness that I can’t describe.  There were so many conversations taking place amongst those in the room, but the only one I could hear, was the one going on within me between my heart, mind and soul.

As I looked down at Cal, stroking his cheek with my hand, my mind was reeling and revolting against the notion that all of the hours of research and countless visits to the specialist were in vain.  My mind was telling me that despite everything that had transpired, I still needed to do something, that it was not too late to save my son. As if in an attempt to spur me into action my mind started recalling every bit of knowledge I had gained from the years of disease research and self-taught medical training trying to re-process it and use it to save him.   A blinding tirade of signs, symptoms, disease names, physicians, and lifesaving procedures assaulted my psyche. At one point, it was everything I could do to not give in and start doing CPR, mouth-to-mouth…something…anything to keep Cal from dying, but something held me from doing so.

At the same time my heart was writhing in pain and desperation. Every rapid beat declared that it was not natural for a mother to let her son die as every pulse of my blood carried frantic screams to my mind, imploring it to find a way to save him. Yet despite the panic and debilitating pain in my heart, it still sought to comfort, protect and care for Cal as only a mother’s heart would.  Like a puppet tethered to my heart’s strings, I found myself leaning down and whispering into Cal’s ear –  words meant to comfort and reassure him as dictated by my heart despite the doubt and fear that weighed heavy upon it.

I told Cal that I loved him and how happy he made me.  I thanked him for blessing my life as he had and that I was a better person because of him. I told him that he was very sick and that he was dying, but that I wanted him to try not to be scared because dying was a natural part of life and that he was going to heaven where he would no longer be in any pain.  I told him I was not going to leave his side and that he was not alone and that he was surrounded by people that loved him.

All the while, watching my baby slowly die inflicted a physical torture that was almost more than I could bear. I could not fathom that the pain of Cal’s imminent death would be any greater than the inexplicable agony of helplessness I had endured for the last several years watching him suffer from an undiagnosed rare disease. Because Cal’s disease had never been diagnosed, I did not know who the enemy was that I was facing so I did not know what to expect or how to fight it.  I felt utterly helpless and I felt like I had failed him. It was everything I could do just to hold myself together. I wanted to jump up and run to get as far away from the situation as possible.

As if sensing that my sanity was in jeopardy, my soul stepped in and rallied my heart and mind, flooding my mind with images and memories from the day Cal was born and forcing my heart to recall all the joy that I felt hearing him cry for the first time.  My soul was holding me fast to the present with the unbreakable bond forged at the moment of Cal’s birth from the unconditional love I had for him. Through the strength of my soul, I knew above all else that just as I was there with Cal when he took his first breath, I needed to be there now with him as he took his last, no matter how difficult it was.

It was hard for me to take my eyes off of Cal, but I remember looking up to heaven with tears streaming down my face. It was as if the hands of my soul lovingly cradled my face and gently guided it upward while I offered a silent prayer to God asking for the strength and courage I needed to be there for my son and my family.  With faith and conviction, I told God that I trusted him and that I was giving Cal’s life up unto him because as his mother, I could do no more.

And at that moment, it was if time stood still and my soul told my heart and my mind to be still. I then looked back down at Cal and as I did, my breath seized within my chest because instead of seeing the pale skin, dark circles, drawn cheeks and the other traces of the brutal disease that was robbing Cal of his life, my eyes beheld the most beautiful baby boy. My Cal. His face was no longer contorted with pain, it was relaxed and peaceful. The circles under his eyes were gone and his skin tone was again smooth and radiant. There was even a slight smile on his now rosy lips.  As I beheld this miracle transformation, Cal took his last breath and was gone.

As Cal’s body relaxed in my arms, an incomprehensible peace came over me and my soul was strong, putting my heart and mind at peace with an understanding that by having faith and entrusting Cal’s life with God – I had in fact, saved my son.

Heather Pacharzina Long

Editor’s Note: Heather Pacharzina Long is a remarkable woman doing amazing things for the world of undiagnosed diseases. In 2009, Heather initiated the Charles August ‘CAL’ Long Undiagnosed Diseases Registry Act introduced to Rep. John Carter. With limited response from Congress, Heather co-authored and proposed a second bill titled H.R. 2671 – The Charles August Long Undiagnosed Diseases Research and Collaboration Network Act of 2011. The bill is currently in the hands of the House Subcommittee on Health.

Heather shared her current thoughts with Global Genes Project:

I believe with all of my heart, the CAL Registry will save lives.  I am not going to let what my son went through to have been in vain.  If I can get just one child like him the help that they need, then I will feel like his death meant something.

When asked if there was one thought Heather could offer other parents of undiagnosed children, her response was as follows:

Keep the faith and know I am fighting to improve the lives of others who go undiagnosed.  No one should go through what we did.


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