Effect of my Diagnosis--Mom.

I asked my mother for her take on my diagnosis because the diagnosis of Cystic Fibrosis can affect family and friends, as well. It turns out she had written out her story in September, 2000, when I was about seven years old. I was then allowed to read this perspective. Even at that point, the diagnosis was pretty recent. She recalls the phone call.

“Mrs. Wilson?”

“Yes?”

“We have the test results for Ariel.”

“Yes?”

“They are positive, Mrs. Wilson.”

I sink to the floor, nearly dropping the phone. “Mrs. Wilson?” an anxious voice asks.

“Yes,” I manage to choke out.

“I'm sorry. Do you want me to put you in touch with the local clinic?”

“Yes. Please,” I reply, slightly stunned.

“We'll notify Ariel's doctor, you'll probably hear from them soon,” the voice continues.

“Thank you,” is all I can squeak out as the tears start falling.

The initial shock could knock a person out for a while. My mother didn’t have a lot of information at that point, only that her daughter had it and that it was going to be a big deal in our lives. Her research gave her everything. That’s pretty overwhelming for a mother to handle. She struggled with the diagnosis along with me for a while. She writes:

I was hard, at first, to talk about it. People wanted to know about it, but they were hesitant to ask, or were afraid they would ask the 'wrong' question. For a while, emotions were a bit raw, but it was easier to talk about it than to keep it to ourselves. When people understood that they were not going to offend me in some way by asking questions, others are more open to talk about Ariel's situation. Although Ariel isn't interested in telling other kids her own age about CF, she 'puts up with' me talking with other adults about it. I have always shown Ariel the respect of asking if it's ok before I talk to others about things. At first, she didn't want anything said, so that made it hard for me. There were even times she became quite upset with me for talking about her situation when she was around, even with family. I'm grateful to those who were understanding if I cut myself off due to Ariel's request, or her obvious displeasure. But time changes everything. CF has become part of our lives now, so it's not so hard to get that permission.

I’d been diagnosed for about a year and some change at the time this was written. My mother shares this experience from looking back at the situation with new knowledge and with hope for the future. One can only imagine how hard it would be in the moment to see hope for the future. We all hurt in some way over the information, my mother most of all. She made sacrifices and did her best to make sure I handled it well also.

This is my beautiful family who puts up with all those things I deal with, too.

For those of you struggling with how to handle such a diagnosis, for yourself or a loved one, you can read an article my family and I got to help write for The Family Magazine of Michiana. This is the link:

http://www.michianafamilymagazine.com/The-Family-Magazine-of-Michiana/September-2010/Have-Questions-about-Coping-with-Illness/ 

There is always someone who understands out there. It’s not easy to handle the diagnosis, but nobody is ever stranded with such knowledge.

Keep Hope,

Cystic Sister @----