Coping With a Life-Changing Diagnosis 

While our son convalesced for several weeks in the Pediatric Intensive Care Unit (PICU) and then in the Rehabilitation Center, we kept a blog. The hospital offered a blogging platform called Care Pages for families who had children in the hospital. It was an easy way to keep friends and relatives informed of a patient's progress as well as a way to connect with other patients and families in similar situations. I also learned that the nurses and other hospital personnel would follow the stories of their patients as well.

 

At first we did what the site seemingly intended its participants to do, we updated everyone about our son's daily progress. But as we continued to write the entries and get feedback, the blog became something different entirely. It not only became a tool for us to find inner resilience and strength as a family unit, but it became a conduit through which we forged our new normal. The process of crafting the entries helped us redefine who we were as a unit and how we would return to our home as this unit.

 

My goals for each entry were to:

• Find the moments in the day that gave us hope

• Keep humor in the story

• Honor the people and the love present in our lives

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