Saying Goodbye To An Angel
When my daughter Sara was born, the doctor placed her on my belly for some skin-to-skin contact “to warm her up” he said, but when I took that first look into her eyes I felt that something was not quite right. “She’s not ready to be here yet,” I said out loud.
Sara’s body was white and listless. “I think we’ll just take her down to the nursery now,” the nurse said and she took my minutes old daughter and ran down the hall with my labor coach right behind her. Sara seemed to be slipping away and needed immediate help. A few hours later my little papoose was brought to me but a nurse stayed close by “just in case.” The doctor ordered Sara to stay at the hospital for several more days “just to make sure” that she was doing ok. I was not going to go home without her so I stayed as well. A few days later she had stabilized enough for her dad and I to bring her home. We were a family.
At the first well baby check up, Sara’s doctor was concerned that she had dropped from six pounds four ounces, to five pounds four ounces. I heard the words “failing to thrive” and he asked that I give her formula as a supplement to breast milk. I was disappointed but willing to do anything that would help my daughter. At the second visit, he was quiet and took extra time to repeatedly check her reflexes. On the third visit, he called in some of his office colleagues “to observe” her, then excused himself to confer outside of the examining room. A few minutes later he returned and told me that he was making a referral for Sara to see a neurologist. I honestly had no idea what a neurologist was, and simply nodded my head in agreement and told him that I would call the number he had given me to set up an appointment right away. I bundled her up and headed for home. Once she was settled, I got out the dictionary.
neurology, noun, the branch of medicine or biology that deals with the anatomy, functions, and organic disorders of nerves and the nervous system.
Reading those words even now, I remember that it felt as if a bomb had just landed in my world. For the next three months on a weekly basis, a pediatric neurologist observed Sara without ever giving a diagnosis or answers to my questions. One day as I hunted around the library stacks I chanced on a book titled, “What’s Wrong with My Baby,” and brought it home. With a cup of strong tea in hand, I began to read. When I got to the chapter on cerebral palsy, I re-read it three times and at the next appointment asked if this is what Sara had. The doctor, a very kind man, paused before he spoke and then said, “Sara certainly seems to exhibit many of the characteristics of cerebral palsy”, but as before, he stopped short of giving any diagnosis. Referrals for early intervention therapies, physical, occupational, and speech were next. It took over twenty years to finally receive a diagnosis; 1p36 Deletion Syndrome, a rare chromosome abnormality.
Sara did not have speech, wore diapers all her life, and was finally able to walk for limited distances by the age of nine. She was an incredible blessing but caring for her was a great challenge. When she was nearly eight years old, I made the very difficult decision to place her in foster care. She was connected with a family that was perfect for her and a few years later became her permanent guardians. It was the right decision to make, but I had many conflicting emotions. Visiting her was never easy for me. As an adult child, she moved to a group home where she was able to have 24/7 supervision.
A recent illness found very grave concerns that were life threatening. In a matter of weeks she was placed on life support and the prognosis of any future quality of life not good. Yesterday afternoon the decision was reached to let my sweet angel fly free.
As is true of every individual, Sara had talents and gifts that were uniquely hers. A master of rainbow colored stacking rings and a great teacher of patience, Sara blessed those around her with her beautiful smile and unconditional love.
Yesterday on the way home from the hospital her guardians, Bonnie and Larry, approved the donation of Sara’s corneas and also her heart valves. Bonnie sent me these words: “Now, we know she was important in our lives but she will also be vital to other people as well. I am proud of her for being able to help someone else.” I am too, Sweet Angel.