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The other day, a dear friend who was blessed with a lovely daughter with this genetic disorder in combination with some other health issues announced that her daughter had learned to skip. I bubbled over with joy as I read how this wonderful little girl just started skipping everywhere all the time, mastering a skill that most everyone else takes for granted. It set my mind racing about many different things. I wish that I could be there to witness the extra joy of watching her experience the self satisfaction along with her zeal for life and love. My heart just soared.
Adversity and Downs Syndrome
A number of years ago when I worked in an ICU, we would often get patients who experienced one problem or another, usually an infection on top of surgery. They were unable to wean off the ventilator, and they were ill enough to require a higher level of care. They would often spend several months with us, battling illness and setbacks that tend to happen when you’re stuck in the hospital environment.
For many months, I cared for an adult with Downs Syndrome who had surgery for a heart abnormality, but she developed a wicked pneumonia that was hard to treat. Her care was pretty routine compared to other patients, and since I was frequently shift manager, this made her a good assignment. On the nights when I didn’t supervise a shift, my fellow nurses would often assign her to me anyway, usually apologizing. I frequently began to hear some variation, “You’re the only one who seems to be able to get her settled after her bath.” And a rough night for her made for a very rough day to follow. She would get frightened and would try to breathe too fast and shallow which would make the ventilator alarm which further alarmed her. The alarms would also demand the nurse’s attention, but there was little that could be done. She would have to slow down her breathing, allowing the ventilator to ease her breathing instead of fighting it.
I would sing to her, would make sure her favorite, relaxing radio show would play, because many nurses would put on bouncy music in the daytime which didn’t help her at night. We had a routine, she and I, and I would call her “my little lamb,” though she was actually several years older than me at the time. I would tell her to lay down in the green pasture by the still waters where she felt safe and satisfied — just like a fuzzy little lamb beside a loving shepherd after a day of following him to that place of rest. By the time that I got her fresh sheets on her bed and tidied up the room, she would be on her way to breathing calmly. I usually didn’t have to do much for her for at least two hours, and that care was less involved. She would rest peacefully. In between, I left the interim healing work that she needed up to the antibiotics, tube feeding,ventilator, and my valiant patient herself.
One night after many months of caring for her, I came into work to see a huddled family, weeping outside of “her room” which nurses rarely referred to by the room number. I hadn’t worked in five days, and she took a fast turn into a rapid decline. It was my first time to ever see her family, for they usually spent the whole day with her, and they left before my shift would start. They were broken, and I was sad and shocked. I hadn’t said goodbye to her, and I grew to look forward to our time together — the sweet, happy lamb who slept by her shepherd in the green pasture at night.
A night or two later, I showed up for work, and a coworker presented me with a lapel pin. The family came in and brought pins to give to those who had taken care of their sweet one the most. The previous shift deliberated and decided that I should be given one, saying, “You really loved her.” The pin was a simple gold tone tack pin of an angel with feet sticking out of the bottom of the gown, little wings, and a nurse’s cap. It is one of my most prized possessions. I went home that morning, went through my own routine, and removed the pin from my scrubs. And I cried and cried, though so grateful that I was given the honor of loving this sweet girl.
Upon hearing of my friend’s daughter and her new skill this week, I could not help but think of all of this. It dawned on me for the first time that I never knew my patient when she could skip and even just to breathe freely on her own. I never heard her laugh, and I know that she must have had an enthralling one. I knew her only when she was already encumbered with devices and cords and wires and tubes, stuck in a bed, so sick with no voice anymore. I wish that I could have been there with both of these would be sisters through Downs Syndrome to see their joy and to share moments like the first time that they learned to skip. I smile wide just thinking about it.
Figuring Out How to Skip
And something else occurred to me, too. I need to take so many lessons from these lovely little ones, both of whom had straight, long auburn hair. There are many areas of my life where I plod along drearily, still bogged down with the baggage of the past and with fear that I will not be able to do what I should and can very likely do very well. I need to grow in these areas. I know well the fear that I feel, and I have seen the fear and anxiety in the face of my patient.
For those who have grown up in restrictive environments or in homes with a great deal of turmoil, we may never have learned how to skip in many areas of our lives. The demand for perfection strikes fear in our hearts, for we are often punished or discouraged or even ridiculed if we didn’t get things right immediately. We may have been raised under “First Time Obedience.” We may have been required to act as little adults, so as adults, we often have to go back to master the things that we should have done freely when we were young. That which seems so simple to children can be like learning to walk for us. Walking and skipping involves throwing yourself out of balance to quickly find it again. Balance is not something that people who grew up in high demand religion know much about. Everything around us was extreme and pressured.
Every night that I cared for her, I would ask my patient to trust me to care for her safety, and she would. What an honor. Likewise, I need to trust my Comforter, my own Shepherd, to follow Him where He leads me through new experiences during the day, knowing that He will comfort me in pastures green to find rest at night. These wobbly knees need to skip with the joy of life as my sisters have done. I need to learn the lesson that they aspired to teach me about living in the joy of life, trusting in love.
I look forward to the joy of skipping with many people, especially this former patient of mine, down streets of gold.
