How I Learned to Keep the Faith After My Son’s Diagnosis

Almost 10 years ago, my husband and I were sitting in a pediatric cardiologist’s office with our son awaiting the results of an echocardiogram. The doctor described in simple terms a disease called pulmonary hypertension (PH). We had never heard of it but were relieved to be at the brink of a correct diagnosis after two years of uncertainty.

I was taking diligent notes as the doctor continued to explain that a right heart catheterization was needed to confirm the diagnosis and to assess the extent of the disease. His tone said we were potentially dealing with something serious, but I assured myself that by knowing what was wrong we could finally help our son get well.

My optimism was shattered when I went home and Googled pulmonary hypertension. I presume our doctor wanted to wait for the results of the heart catheterization before uttering the words “life-threatening,” “no cure,” and “transplant.” But there they were in the articles I was reading.

I had unsettling confidence on the day of the procedure that we were indeed dealing with PH. We sat in the waiting room and watched as doctors came and went, briefing families on their loved ones. My heart sank when our doctor walked in wearing a serious expression. It was like a scene in a movie. He removed his surgical cap and grabbed a chair to sit down with us. I remember thinking, “The other doctors didn’t need to sit, so why do you?”

He slowly began to confirm the worst. “Your son has pulmonary hypertension and is critically ill.” As he started discussing measured pressures and cardiac output, I interrupted with a question. Unable to bring myself to ask if my son was going to die, I asked what could be done for him. “We might consider a heart and lung transplant,” he whispered.

I must have gone into shock, because the next thing I remember I was standing in a hallway facing a window and feeling angry with God because the sun was shining in on my face. Furious, I asked God if I was supposed to be thankful for this beautiful day. Judging by the glance from a woman coming off the elevator, I must have asked it aloud.

Employed by the Catholic Church and a devout Catholic my entire life, questioning God was new to me. Why was my son sick? Was God punishing me? Where was his love in all of this?

My son survived five years on PH medications and IV therapy before needing and receiving a heart and double-lung transplant. His journey has not been easy, between dealing with his own health and watching friends lose their battles. Witnessing my son go through this has caused me to have many anger relapses toward God. However, being angry with God means that I have never stopped believing in him.

When I look back on the day of my son’s diagnosis, I wonder how long I would have remained in shock if the sun hadn’t aroused such anger in me. As quickly as I became angry, my emotions turned into a fierce determination to help my son defeat the odds. I believe God was with me that day, nudging me awake, and lighting a fire in me to fight for my son.

Since the age of 12, I’ve worn a cross necklace that my grandmother gave me. Rarely have I taken it off. It is not a piece of jewelry, but an extension of myself and a reminder that God is always with me.

One night I reached for it and it was gone. I was shattered! My son had just been listed for transplant and I needed the security of that cross more than ever. Symbolically, I felt like I had lost my faith. Throughout the night I searched the house, car, and outside. Crying and exhausted by morning, I fell into a chair and asked God, “Why, on top of my son’s declining health, did this have to happen?”

I stormed out of the house into the pouring rain to search my vehicle again. Feeling defeated, I slammed the car door. I looked down at a sparkle that caught my eye and sitting in a puddle, was my cross. I had walked over it many times without seeing it. This experience became an analogy for moments when I’m too numb with sorrow and worry to feel God’s presence. He’s there even when spiritually I am not.

My necklace survived the night in a puddle. (Photo by Colleen Steele)

I respect that not everyone shares my Christian faith. But if you do, I hope that your PH experience strengthens instead of destroys your trust in God and that you find your own spiritual inspiration.

***

Note: Pulmonary Hypertension News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Pulmonary Hypertension News or its parent company, Bionews Services, and are intended to spark discussion about issues pertaining to pulmonary hypertension.