I realize we are just getting started helping our children and family as a whole unit live and succeed with chronic disease. We have definitely had more experiences in the hospital and at the doctors than an average family, but know there are other families that absolutely have had more experience than us. Watching each of our infants experience at some point an extended hospitalization left us feeling confused, afraid, lost, guilty, and often very angry. In the beginning I remember a toe to toe nose to nose discussion with one pulmonologist on call one day in the hospital with my 7 month old son (who heart breakingingly screamed bloody murder through every IV). The pulmonologist told me to “get used to this mom, you have to get used to this, you have children with a chronic disease you need to expect weeks in the hospital.” I was furious. I told her I refused to accept the hospital as normal and I refused to quit asking to go home as soon as we could as often as I could. She never came back to our room, and I never saw her again. She asked another pulmonologist to handle us (lets be honest me). I think I would like to let her know now that I apologize and I understand. I’m not happy about it, and it still feel angry about it a lot of the time but I understand that being intermittently hospitalized is part of my children’s life. We also understand that our emotions are second to helping our kids do their best to prevail with positivity and hope. Our attitude will be mirrored and magnified in them especially if it’s a negative one.

Monday, March 9, 2015

Red Crayon

Some kids chew on crayons. Some kids eat crayons. They really are very pretty and it is tempting to have a nibble. Our Maelee was no exception to this rule, although she may have chewed on them  a bit longer than other kids.

In Kindergarten her teacher saw her walking around the room during play time and noticed bright red around her mouth. Concerned it was blood she took a closer look at Maelee and talked with her about it to discover she had eaten a red crayon.

The teachers and health office professionals at Maelee's school have ALWAYS been carful, supportive, and absolutely amazing with her enzymes.

Pretty soon after the eating of the crayon was discovered I get one of the most memorable phone calls ever from the school health office. "Hi Kamarah, quick question for you. Maelee seems to have eaten a red crayon this morning. Just wondering if you think we should give her some enzymes?" 

I thanked her for her exceptional diligence on Maelee's behalf and said that I thought it would be OK not to have enzymes for the crayon, and assured her we would talk about (again) not eating crayons anymore when Maelee got home from school.

Then Frank and I talked that night about the possibility of maybe finding a high calorie crayon somewhere or inventing one for CF kids.
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1 comment:

  1. CaraMarch 15, 2015 at 11:35 PM

    Just read this to Tim and had a good chuckle! You are hysterical!

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