My intention is not to turn this into “my daughter’s lung transplant journey” but it is a consuming and ever present experience in my life right now. I will weave potentially useful skills into my narratives 🙂 Last week my daughter and I were in Durham, NC while she underwent five intense days of evaluation geared toward determining her eligibility for a lung transplant. You can read all about her view of the entire process at www.ontonewwindows.blogspot.com. In Duke-like efficiency (the best I have ever experienced!) we heard on Tuesday that she has been accepted into their Lung Transplant Program. On Tuesday August 20th she and I will head back to Durham for the entire process of getting her on the lung transplant list through surgery and recovery. We will be gone for 3-6 months, maybe longer.
My role as her primary caregiver is to be physically and emotionally healthy enough to provide the support she will need when she goes through the transplant and recovery. At times during the evaluation week, I wondered if I am up to the task. Toward the end of the week she got grouchy. Really, I can understand it now but one day she snapped at me and I mentioned she wasn’t using a kind tone with me. This started a bit of an argument between us. For a moment I thought, “Fine, you want to have someone else be your caregiver?!” It was a split second, but the words did float through my mind. A reminder that I still have that very reactionary and defensive part alive and well within me! Within a few minutes I realized she has to have space to be grouchy and I need to work on not taking it personally. We were both tired, but she was exceptionally exhausted from the tests and early mornings. She’d been poked and prodded for five days and she was reaching her limit.
I remember when my kids were little I would tell them they couldn’t cry in public. I was very image conscious and in my mind crying children did not reflect positively on me. I was essentially telling them they had to be a certain person in public who was different from their true self. Ugh! To have those days back again… I have to allow people around me to be where they are emotionally, physically and spiritually. I can embrace Anna right where she is…in pain, uncomfortable, tired, scared. Whatever the case may be.
It seems no matter where I am in my life, I face parts of me that need some work. That’s OK. I think that’s because I am still breathing 🙂 It’s all a part of the journey and I’m thankful Anna is ultimately patient, forgiving and understanding.