One month ago today Ed and I met with Aimee’s Pulmonologist and the hospice nurse together. It was her 17th birthday and we learned that the trach cultures showed resistance to all the different combinations of antibiotics. We had to decide that day if we stop treatment or try one last combination that had a possibility of knocking down symptoms for a time. We were so grateful not to have to choose the end of treatment on her birthday. We have been so grateful for the many moments made possible by that choice. It did not eliminate symptoms, but it did hold them off from progressing for several days.
When the hospice team walked in this afternoon, there was immediate comment that Aimee looked different than yesterday. That something has shifted. It is true. Her eyes and cheeks have sunken and her color has changed. The air around her is still. Now Aimee is a shadow. Each day we remove or pull back from cares that we have done for years to keep her comfortable and healthy. Now those same tubes or same routines cause distress and pain. One by one each day we remove them or discontinue them. The guilt and hopelessness is lurking near. We frequently remind each other of what is true and where our hope is found. Every moment goodness and mercy follow us.
Aimee has had a beautiful life. Her story is beautiful. And it lives on in the shape of each of our hearts.
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We love to read your comments and encouragements! Messages to Aimee are always welcome too. I will definitely read them to her. :)
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