I’ve been thinking about the things I wish I would have known. So maybe this is to all the care givers, parents, significant others of someone with an end stage disease. I wish I would have better understood the emotional toll living with end stage CF had on Melanie and Rosie. Every breath a reminder that this disease is killing you. Every treatment, every pill, every doctor visit, every hospital stay. I wish I could have been more sensitive. Looking back I can’t believe how well Melanie handled it all. I don’t think I could have done as well as she did. I wish I would have been more understanding. Giving more hugs and less lectures. It’s so hard to stand by and watch your child fight for every breath. I can’t imagine the toll that has on a person.
It wasn’t until after Rosie got her transplant that I began to understand. Rosie would make comments that really made me think. Her first shower after transplant was “a weird shower”. When I asked her why I was surprised at the answer. “I could take a whole shower and didn’t get out of breath” she said. She was also excited to be able to brush her teeth twice a day. I never thought about how much energy it takes to brush my teeth or take a shower until that day. I’ve never been thankful to have the energy to take a shower or brush my teeth.
I wish I could go back and tell myself these things I’ve learned. I wish I could go back to all those times I was frustrated with Melanie. I would stay with her instead of going home to cool off. She couldn’t go home to cool off. She was stuck there with no where to go. I would go back and just hug her and lay next to her in bed and talk or cry with her, tell her she was not alone. I wish I could tell myself to be more compassionate and more understanding. I couldn’t see the forest for the trees then. Now I see the forest and it’s too late for me.
I hope that someone out there will read this and it’s not too late for them. I hope that with my story I can help others to see what I now see. Somewhere today, someone is fighting for every breath, waiting for the doctor to tell them they are listed for a transplant, waiting for the call to tell them there are lungs on the way. All the while knowing that death is not far away. I pray they are not alone, I pray they have the support and understanding of a loved one. I pray their loved one can see the forest and know that it’s the disease and they are doing their very best to be positive while staring death in the face. If I could go back I would tell myself to just say “I love you. I’m here for you” when Melanie was struggling emotionally. I would tell myself not to try to reason with her or lecture. I’m sure I didn’t say anything she didn’t already know. If I did need a break I would tell myself to take a walk, get a cup of tea and then go back to be with her.
In a world where death and life ending diseases are a reality, we need to be understanding and compassionate. We need to “love our neighbor as we love our self”. We need to stop and ask ourselves how would I want to be treated? I hope that by sharing my story I can help others avoid the pain of the regrets I have to live with. I hope that someone will be able to see what I didn’t see and understand what I didn’t. Dear parent or loved one, tell them you love them. Give them a hug or hold their hand. Don’t lecture or be frustrated. They are staring death in the face and need you by their side.