24 Years of Lessons Learned

The nursery rhyme tells us that “Friday’s child is loving and giving.” While I don’t universally subscribe to the accuracy of nursery rhymes, as all Wednesday’s children will be grateful to hear, in the case of my younger daughter, who was born twenty -four years ago yesterday on the Friday before Trinity Sunday , the nursery rhyme was definitely true.  We didn’t know her sex until her arrival, but we had chosen the name Trinity for a girl, after a high school friend. It was an extra bonus that she was born so close to Trinity Sunday.

Her birthday this year fell on Pentecost, and at early morning Mass where she was both singing and ringing handbells, I began to reflect on the gifts that she has given to me as a parent and a person. (I recently wrote a post about the impending end of the resident-daughter-in-church-choir era here.)

Trinity reinforced a lesson I had begun to learn from her older sister:  that children come as their own individual selves, with a large portion of their temperament already formed. Even before she was born, Trinity reacted strongly to her environment. For instance, she would startle markedly in utero if there was a loud noise nearby. As an infant, she was so sensitive to sound that she would awaken if someone across the room turned the page of the newspaper.

This sensitivity extended to people and emotions as well. It was clear at a young age that Trinity had a social conscience. I remember her playing with paper dolls and creating conversations between them, as though performing a little play. She told me that this doll worked at helping people who were poor, but her sister liked to have lots of nice clothes and things so she had a job where she made a lot of money, but she also gave money to her sister that she could use to help people.

Trinity’s empathy also encompasses the environment. She went on to major in the Science of Natural and Environmental Systems at Cornell and will soon start a master’s program in Conservation Biology at ESF, with a goal of restoring native species to ecosystems. Her empathy does not extend to harmful invasive species!

Trinity also taught me the importance of solitude. Perhaps because she was so sensitive to the world around her, as soon as she could crawl, Trinity would sometimes go off to her room to play alone. As she got older, there was always solitary reading, writing, thinking, dreaming time built into her day. This alone time is vital for keeping her sense of personal balance and I expect will remain so. Her example taught me about being alone without being lonely.

Trinity was also spiritually aware from a young age. She was blessed with a sense of prayer and connection with God as a child. Unfortunately, dealing with the church as a human organization is more complicated. Her place in the church was severely tested in her early teen years, when we left our home parish over an emotionally abusive and unstable pastor. Trinity was halfway through the two-year preparation for her confirmation, so we joined a parish where many of her high school friends were members, so that she would have familiar classmates for the final year of preparation. It was still very difficult to decide that she wanted to be confirmed in a church that had hurt her and many friends and family very badly. She also had to write a letter to the bishop who had refused to protect us, asking to be confirmed. I never read the letter, but she apparently forthrightly told him of her struggles with the situation. She did decide to be confirmed and receive the fullness of the Holy Spirit, whose gifts she displays in her own quiet way. The red vestments and banners in the church, the symbol of the tongues as of fire, and the readings and prayers of Pentecost reminded me of her confirmation and her spiritual gifts yesterday on her birthday. Next Sunday will be Trinity Sunday, so I’m sure more reminders are in store. Each of us is a child of God in our own right; Trinity has always clearly shown that being my child does not make her God’s grandchild or child-once-removed, but always her own unique reflection of the Divine Light.

In other ways, Trinity has taught me to patiently and quietly deal with suffering. When she was sixteen, she was hospitalized for a week with severe colitis, which was diagnosed as Crohn’s disease. I stayed in the hospital with her and she was such a good patient, despite pain and some pretty harrowing test prep protocols. Given that we were already dealing with a chronic illness with her sister, Trinity’s diagnosis was a big blow to our family. After catching everything her sister had brought home from school before she was old enough to go to school herself, Trinity had been remarkably healthy during her own school years, so her level of equanimity in the face of illness was amazing to me. The next two years were filled with side effects from meds, follow-up tests, second opinions, diet changes, concerns about health care facilities when looking at colleges, etc. Finally, after transferring her care to a gastroenterologist near her college, she was put on a carefully monitored program to cut back and out the medication she was taking, which revealed that she did not have Crohn’s disease after all, for which we are all very grateful. I will always remember how calmly and maturely she dealt with a very difficult situation and an uncertain future.

I should probably close before I risk embarrassing Trinity any further. I don’t think she reads my blog very often, so perhaps she will be spared. Thank you, Trinity for the privilege of being your mom for the last twenty-four years. I wish you a great year to come, as you embark on grad school. I’m sure you will keep learning and that others will learn from you by example, as I have.

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Reblog on Our Broken (Mental Health Care) System

I was very moved by Nina Gaby’s guest post on Sarah Cushman’s blog and wanted to share with others:

http://susancushman.com/mental-health-monday-guest-post-comments-on-our-broken-system/

News from back home

I was awake early today, which usually happens when I know I have a morning flight. Because we were ready early, I called my mom, which, on Eastern Daylight Time, makes her six hours later than on Hawai’i Standard Time. (Given its latitude, Hawai’i has no use for shifting its daylight hours later.)

That morning, my mother had heard back on some tests that she had had done. It turns out that she has giant cell arteritis, a condition that often occurs with polymalgia rheumatica, for which she has been receiving treatment with steroids for about a year. This link has further information on both conditions.

A few days before we left for Hawai’i, I had been thinking how lucky we were that my dad, who has had a number of medical issues in the part year, was doing well. That same day, my mom had an appointment with her family practice doctor, who was concerned that her sed rate wasn’t staying down. She had had a couple of instances with difficulty chewing crunchy foods and he was concerned that she had developed giant cell arteritis. He wanted her to see a rheumatologist, have more blood work, and see a surgeon for a temporal artery biopsy. She wanted to wait to do the biopsy after we returned, but it turned out that it was arranged for more quickly, so she had it taken last Friday, with the results coming today, Wednesday. It was a bit of a shock to us when the biopsy came back positive, because the only symptom she had had was the very occasional jaw pain. No visual problems, no headaches, no sensitive temples or scalp. Given that it was caught early, there is little chance of any lasting damage.

Mom’s doctor is about to retire. We were joking that he wanted to go out with a bang, diagnosing a serious condition early on minimal symptoms. It shows the value of having a good family doctor looking out for all aspects of your health. Even though he is retiring, my mom will be in good hands, with care provided by her new rheumatologist and one of the younger doctors from the family practice who has been her back-up provider in recent months as her long-time doctor has been cutting back his hours to ease into retirement.

Now, nothing else is allowed to happen on the medical front, at least until we get home from our second week, now in Honolulu…

 

Hours in the ER

On a Monday in January, I accompanied a family member to a walk-in clinic, which resulted in our being sent to the ER of a local hospital to look into some EKG issues. They did do a prompt EKG, and, satisfied that no heart attack was occurring, sent us to wait in the filled-to-overflowing waiting room.

We spent over five hours waiting there.

This is not complaining about our situation. While the wait was long, we knew there was no immediate danger and there was no ongoing pain to deal with. What was so difficult was watching others who were in pain and in poor condition waiting so long.

Like the 90+ year old woman who had been sent by her primary care office because she was struggling to recover from an illness. She felt that she was in the way and inconveniencing everyone else. Her heart was breaking from watching other people in need. We told her that she had spent many years helping and caring for others and that now it was time to let others return the favor and care for her.

There was a woman who came in by ambulance after an accident who had back and leg injuries and who was standing on one leg and supporting her weight with her arms on her wheelchair because she could not sit. The ambulance needed to take their gurney back and the hospital didn’t have any spare gurneys or beds.

The most wrenching example of that lack of a place for patients to lie down while waiting to be seen was a man with advanced Parkinson’s who had been brought in by an ambulance crew after a fall in his home.  It had taken four people to carry him in a blanket-sling down the stairs to the ambulance. He was brought in on a gurney with a suspected pelvic fracture, but that did not stop them from moving his partially-dressed, blanket-wrapped body into a wheelchair. His sister, who was herself elderly and mobility-impaired, arrived along with a friend. As the hours went on, the man began to slump further and further down in the wheelchair. The friend went to fetch a staff member to help before he fell onto the waiting room floor. The staff member succeeded in shifting him into a somewhat more stable position, but it was clear that the stiffness from the Parkinson’s was making it difficult. The friend asked if there was somewhere he could lie down but was told there were no beds in the ER and no beds in the hospital available. A bit later, he was again in a precarious position and the friend again summoned staff. Even with three people and some extra pillows, they had difficulty re-positioning him and he nearly landed on the floor. All of us in the waiting room – staff included – felt helpless and worried.

Eventually, the 90+ year old woman was called back, which led to a round of applause from the waiting room. Shortly after that, my family member was called. They each spent the next three hours on beds in the ER hallway, about five minutes of which were spent with a doctor. The man with Parkinson’s went back a few minutes after my family member, fortunately to a room with a bed.

As we were preparing to leave the ER after 10 PM, the two women who were accompanying the man with Parkinson’s were pleading with the ER staff to keep him overnight, because there was no way the two of them could get him back into his home. Remember it had taken four able-bodied people to carry him out and they were two older women, one of whom used a walker.

We don’t know what happened.

We – our community, our society, our country – have to do better.