"Lucy" has an 11 year old son with autism and she is living my worst nightmare. She has been diagnosed with chronic myeloid leukemia which turned acute 8 months ago. She has been hospitalized and has received numerous chemotherapy and is suffering awful side effects from the treatments. She worries about the fate of her son if (or when) she dies and feels she has not prepared properly for his care when she passes on. I write this blog with her permission but with a fictitous name as I was her nurse for 12 hours at night. When I told her I had an intellectually disabled son, I felt as if she had finally connected back to civilization after being on a deserted island for many years. We shared stories the whole night about our difficult childhoods, God's will, what we are learning from our sons and the worries we have for them when we are no longer here on Earth. She has her sister and mother who take great care of her and love her very much but they cannot understand what is in her heart as a mother to a special child like another mother in the same situation.
I gave Lucy as much information on the various resources to help her such as respite, Regional Center, In Home Supportive Services, ABA, special needs trusts, Ability First programs and she took copious notes with wide eyes and seemed to consume every single word I spoke. She said she was so depressed about her situation and cried out to God the night before for some help for her son while she is trapped in a sick body and stuck in a hospital room for months. She felt I was the answer to her prayer when I shared my son's story. Her sister seemed annoyed that Lucy was trying to take care of her son's needs when at this time she felt she should be trying to recover from her own leukemia . I totally agree with her but to tell a mother on the brink of death to just not worry about an intellectually disabled son is an impossible thing to do and only creates more anxiety and hopelessness. I felt I was giving her relief from worries by letting her know that there were so many resources out there for her son and that he can be taken well care of. This is what I mean when I refer to this being an isolating experience because other around us (even those who love us dearly) cannot fathom what we are feeling and what we really need to hear.
When morning came, I wasn't sure if I would see Lucy again but my parting words to her were those of healing for her own body. She seemed sad to see me go. I held her hand and told her to repeat the manta. "I am healthy. I am whole" and to really believe it and visualize it into reality.
Have I prepared enough for my death? No, I'm not dying but the future is guaranteed to no one. I am attending a special needs trust seminar this Saturday which I have signed up for weeks ago. How appropriate that I have met Lucy this week. Perhaps, this chance encounter is a sign from Spirit that I also need to prepare. Lucy said I was an inspiration but she has also woken me up to realities that I turned my head away from.
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