Again--Cooper

When I was about 12 or so I saw a photo of myself/notmyself. It looked like me. The dress was almost the same, the face was similar, familiar, but not quite the same. "Mom, is this me?" "No, it's your sister Janice." That's how and when I learned I had a year older sister who may have died as I was being born. Never a word was spoken about her. Not sure when she died. No idea what her birthday was. She was hospitalized and died of dehydration from Diarrhea. My childish thought (even though I was the caretaker of my siblings) was oh well, she was JUST A BABY. The stoics of the 50's and 60's parenting leaked no emotion. My mom said she didn't even know where she was buried, her sisters-in-law did it and never showed her. Could that be true? No one knows now. I was reared as the oldest-- have oldest child traits-- what would have been different? Would she have been the ONE to go to college? A million things I ask myself this morning. How did my mom go from losing a one-year-old to parenting the next? and really resenting the one after that...? No Dr. Spock to help you then. No Elizabeth Kubler Ross. No anti-depressants. No mental health care. My mind is roiling this morning. My first thought upon the birth of my son was oh my god, there is no such thing as just a baby. I had a clue that day-- some understanding. At this time in my life, there have been many losses, some of them dear children. Enough ways of dying to know there is no best way, no worst way to lose your child. Every way is the worst way. Every age is the worst age. In my late 20's, maybe early 30's, my mom and I were driving south on First street and on the radio was a story about how many babies died in the 40's from an inadequate formula and named the brand. That is when my mom found out what killed her baby girl. Formula may have been the best "New Thing" then, and Dad refused to allow her to nurse her babies, those breasts were his. Nursing was old fashioned and back woodsy at that time. This week another of my sweet school family has had an unbearable loss. Lindsey's mom died 2 years ago from a quick and vicious round of Burkitt's Lymphoma. Yesterday her 3 month-old baby boy died of a rare fatal genetic brain disorder. There is no good time. I put the diagnosis below. There is no such thing as "just a baby."



This little baby died yesterday.

13 hrs · Terre Haute, IN

For those who knew Lindsey and Kyle. There little angel Cooper went to be with Grandma Mel today.
Please don't text or face book them at this time.

this is the email that I received yesterday

Kyle and Lindsey have asked that I send an email to update everyone about Cooper. After extensive testing the doctors at Riley have diagnosed Cooper with Leukoencephalopathy with vanishing white matter. This is a rare terminal genetic disease that affects the brain and spinal cord (central nervous system) with no treatment available. Because the disease is characterized by rapid periods of deterioration followed by a plateau with some recovery doctors are unable to give Kyle and Lindsey any idea of how long Cooper may have. They are still at Riley and plan on remaining there for now, but may return home with Hospice care. Cooper is currently on oxygen and the doctors are giving him medication to keep him comfortable while he rests with mom and dad. Cooper will be 3 months old on Monday.

Kyle and Lindsey are doing as well as can be expected and have been surrounded by family these last few days. They would appreciate your continued prayers and support but have asked that you refrain from contacting them at this time as they focus on spending time with their son.

I have talked to Kyle about any needs they may have or what people can do to support them. At this time they are not aware of any needs and have simply asked that you continue to lift them and Cooper up in prayer.

“God is our refuge and strength, an ever-present help in trouble.” Psalms 46:1