Let Your Heart Be Light

Last week, Jack said he wasn’t going to ask Santa for any presents, he just wanted to ask for him to give me new lungs.  I said that would be a waste of a Santa request, that I’m already on the waiting list and I’d prefer to go through the hospital, rather than get any ol’ lungs that Santa could find.  He looked at me exasperatingly and said that Santa could at least do his magic to get me lungs very soon and without pain.

He is incredibly worried about the risk of me getting lungs and wishes we could just hold out for a medical cure for Pulmonary Hypertension.  But the most profound part of our conversation was that he thinks maybe I won’t know how to be a person with new lungs, that maybe I’ll miss this person that I am now.  This was a heart-wrenching conversation, about me dying, the pain I’m going to go through, the different person I will be and how worried he is that I’m not prepared for it.  And he has really made me think about this, that I am a different person today because of my disease and that I can’t forecast the scars it will leave once I am rid of it.

But I tried to emphasize that I am not unhappy with my life; it is incredibly important that Jack and Charlotte both realize that.  I am very content with what I have done, what I do every day and where I think I’m headed in the future.  I like who I am.  My life will be better with new lungs because it’ll be that: life.  But despite my current physical limitations, I am grateful that I have enough energy to be a fairly active participant in their lives, volunteering in their classroom, providing them food and shelter and assistance as they grow.   I am able to engage with my friends and I find endless laughter with my husband.  I have a family who would truly do anything for me and to know that I can call them on that is a source of huge comfort.

I do not know what road I would be on if I hasn’t been diagnosed with Pulmonary Hypertension five years ago.  Would I be struggling to balance a career and family life and falling short of my high standards?  Would we have made decisions that were high risk and didn’t pan out, like buying a home that wasn’t ideal, or Scot taking a new job at the peak of the economy then being laid off?  Would our marriage be stronger without the stress of my terminal disease or weaker because of an apathy that often dooms some relationships?  There are so many “what ifs” and close calls in life that things way more horrible than my disease could have happened if I wasn’t on this road I’m on now.  Of course I’d rather not have Pulmonary Hypertension and would definitely not want a lung transplant, all things considered, but that’s how things have shaped up and we just deal with it.

We don’t know if life would be better or worse than it is right now; it would be different, that is all.  I’m a fan of the mantra “Life is neither fair nor unfair; life is life.”  (That, and “it is what it is” – I know they are a little pithy but they do help ground me when I need it.)  I am grateful that I have been given so much love and success already – I have more than most and am very proud of where I am today.  I promise I will do all that I can so I can continue on this adventure with my family, wherever it may lead.