It took a long time before I had the courage to ask how long the doctors thought Parker’s pulmonary hypertension would allow him to live. I immediately regretted it. It was too late, though. The grim reaper having been mentioned, wasn’t about to retreat back into the darkness. The answer came that nobody expected Parker to have even made it to his first birthday. According to his then most recent heart cath, it wasn’t believed that Parker would be given the gift of growing old.
I don’t know how to describe how mere words can create a vise so strong as to cause your own heart to freeze. It’s the stuff PTSD is made of. It provides the motivation needed to fuel an angry fist to be despairingly raised in the direction of God. The scars of this news never heal. The simple memory of that day is all that is needed to rip them open over and over and over again.
Overwhelmed by the feeling of powerlessness, you begin to reach out for something steady to focus on. For me, it was my love for my son and a deep desire to once again feel hopeful. Only by focusing on hope have I been able to shut out the fear. Slowly, one grain at a time, that hope turns into faith, and an understanding of how faith works.
The need for a reprieve from your heart ache and fear grows so necessary that it takes over as something within you fights to preserve it’s flame. Slowly, a grain at a time, you make the choice to trust in something bigger than you. For me that was God.
It hasn’t been easy. I have to constantly work at it, or else it all evaporates and I’m left having to begin again. Everything from the television shows I watch, to the people I spend time with, to how often I hit my knees each day, plays a roll in keeping my faith stronger than my fear. I can’t be around stressful people. I need to be submerged in the upbeat and uplifting. It’s the recipe I use to find the strength to keep fighting for Parker and for all the tomorrows he can possibly attain.
Today found me refusing to be drawn back into the despair. Thinking I would be taking Parker on a grand adventure for his birthday today, we were instead confined to home, empty handed in regards to ways of celebrating the accomplishment of Parker turning 11. I know it meant more to me than him. But I had allowed my heart to think that maybe, just maybe, Parker would have the opportunity to celebrate a birthday in the ways his typically developing peers so often do. The depth of my sadness over this lost opportunity surprised me. Tonight I’m realizing that being proactive is my best defense the feeling of being helpless. Today I put into action a new determination to make sure our family’s needs are being met in ways both steady and stable. I’m giving myself permission to put our family first.
I don’t know what Parker’s life plan holds in store for him. I hope for magic and the assurance that happiness is never far away. I hope for new cures and the total demise of purple ribbons being needed to bring awareness to the insidiousness of Pulmonary Hypertension. We’ll take it one day at a time, with a brightness of hope so powerful that it burns away any negative before it has the time to organize itself into anything substantial enough to be afraid of.