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| I took this photo and printed it in my darkroom. |
Someone asked me for a number of Erin Joy stories, so here they are.
Erin's neurological problem meant should could not make her muscles move, turn over, or grow stronger. She made the most of it.
If I told her not to lift up her leg, she concentrated a long time, even sweating, then lifted it up just to show me.
That is how we got her to hug her teddy bear for the Midland Daily News photographer. When we told her not to hug it - "You better not!" - she hugged it with a grin.
Erin loved to laugh when people were upset over trivia. She could not stop laughing when big messes happened. A quart of yogurt was dropped and it splashed all over. That was funny enough, but every telling of the story (and the nurse's bad words) made her laugh even more.
Erin's room was across from the nurses' station, so the spilling of the large three-ring notebook with all its pages had two immediate reactions. One was the expletives from the nurse. The other was the hilarious laughter from Erin's room. That continued with every retelling of the story. Erin not only laughed even more but looked into our eyes to enjoy our laughter.
The nurses called her Joy because she smiled so much and were surprised "That really is her middle name?"
We called her "Erin Where's the Party Jackson," because any special gathering delighted her.
She loved hearing that her Mom was in trouble. "Bad Mom" was countered by "Bad Daddy" which ended with a chorus of "Bad Erin," making her laugh.
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| We visited Larry Carlson, who had ALS, and we took Erin along. I took Erin to an ALS patient in the hospital. She began to pout because she was on the bed next to him but not in the conversation. I told him that she was sad and he said, "She has to learn she is not the only person in the world." I replied, "YOU tell her that!" She loved that. Pouting easily turned into crying and seizures, so I did whatever I could to stop that. If she started to look sad, I said, "No pouty face. I won't look at it." If she started to cry, I would turn away and make a joke of it. She would force a smile out, her face red and tears dripping down from her eyes. It was very touching. Christina turned scary hospital moments into fun. A scan machine was dubbed "going camping." Once we got talking about the new PET scans, and safety concerning the powerful magnets used. Erin was due for one. I said, "That scanner will tear the strip right off your credit cards and pull your fillings out." Erin found that hysterically funny. |
Erin's muscular control was very weak, but she could flex when she really wanted. I was reading the paper with her in my arms. She slowly used her fingernails into my flesh until I said, "Ow! You did that on purpose, Erin!" That made her laugh. She also swatted the paper from my hands - more laughter.
We took her to see the movie "Mr. Mom," where a husband stayed home while his wife worked at an office. One of those workers tried to make a pass with the mom, so she slugged him. Later, I asked Erin, "Did you like it when the Mom slugged the bad guy?" Erin swept her arm in a great, circular motion. "Erin! Did you do that on purpose?" She swung again. That was simply beyond all expectations, given her growing weakness and previous lack of coordination.
One nurse said, "Erin, tell your parents what happened to little Johnny." Erin began to laugh. The nurse went on, "I was carrying him as best I could when I tripped. I fell down with him but we weren't hurt." That sent Erin into gales of laughter. If we had extra visitors, new to the story, just starting it got everyone laughing.
I prayed, before Erin was born, that she would not suffer from her sister's neurological disorder, but if she did, that I would be a good pastor and husband. Medical and ecclesiastical challenges were abundant, but there were many blessings along the way.
We offered a special emphasis on how bad Erin's diapers were. We had various statements to respond to the crisis of the moment. One new nurse did not know that when she began to change Erin's diaper. "OH Erin!" - with real disgust in her voice. Erin began laughing. The nurse said, "I cannot believe a child can be that ill and weak and start laughing like that."
Luther said, "You have as much laughter as you have faith," and our very special girls exemplified that faith.
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| Erin needed teeth removed because of her grinding them so much. We all cried. She smiled after crying to show she was OK. |
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| Christina loved our children; Bethany and Erin adored her loving patience. |
