Robert’s Road to Recovery Journal

Presented by the International Society for Mannosidosis & Related Diseases.

Kathleen’s Diary: June 24, 2002

BMT + 83

Robert had forgotten how to “share” while he was in the hospital and relearning it is coming very slow. He does remember how to tattle and does it very effectively although most of his tattling is in baby talk and the only part easy to understand in the sentence is the name of the sibling he is complaining about.

Mark and I are also trying to get used to home life. I am having a hard time understanding how much money it takes to run our little family. We did not spend as much money each month while we were in the hospital. It now seems like a pent up demand has hit us hard; kid’s wanting to buy, buy, buy and cars that are whining about their need for maintenance.

One thing you can say for the hospital; life is fairly basic. There was only one goal in the hospital; it was to keep Robert alive and that was our focus for the last six weeks; one minute at a time, one hour at a time, one day at a time.

I am finishing the update while Mark is trying to fix a cabinet one of the kids pulled on too hard today.

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