Monthly Archives: February 2017

Rare, but together we are mighty

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When your child is diagnosed with a rare syndrome, you are at first overjoyed: YAY! We know what “this” is! Then you are back to being overwhelmed: What do they mean they don’t know what “this” is! A parent who spent years searching continues on, looking for answers, looking for a cure and (most desperately) looking for someone who has been there before who can give you a road map.

I spent the first five years of Bridget’s life without a road map.  Not one doctor could tell me anything other than, we know something is wrong but we don’t know what it she has. Years of seeing doctors and specialists who would tell us that we are doing everything possible to make Bridget the best she could be, and to keep up the good work.

Then we were diagnosed with PACS1.

Journey over, right? Um how about it was just beginning. Continue reading →

100 Days

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It is well known that I suck at crafts. I’m not being harsh on myself. In fact, there is a woman who can testify that I gave her strangest baby blanket (that was thankfully saved by my mother).

After TWO nights of crocheting
The time I tried to make image number 1 and ended up with image number 2. Continue reading →

Along comes a milestone

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We waited a long time for Bridget to speak. It took years of therapy and patience. I remember the first time she said “Abby”, “hooker” and “I love you”. For ages, we were Bridget’s translator to the world around her.  We knew what she was saying, the world around her usually looked at her like she was speaking a foreign language.

Over time, Bridget’s articulation became more pronounced. Suddenly, the girl without words was shouting, “Miss Tisha Look At ME!”.  Continue reading →

PACS1 Awareness Day

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I love being a member of the PACS1 family. Our small group has grown from 14 families to over 40. Our most recent adoptee asked a reasonable question: “all these young children…I am wondering why it took so long to diagnose X”.  This mother has searched for over 13 years for an answer to what made her son unique.

Why does it take so long? Continue reading →

The games we play

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All parents wonder when their child will accomplish a goal.  Parents whose child has a disability play a vicious game with themselves. The game is called, “Will my child ever….”

Will my child ever roll over?
Will my child ever stand up?
Will my child ever say my name?
Will my child ever speak?
Will my child ever walk?
Will my child ever say she loves me? Continue reading →

Milestone, check.

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When Bridget entered the public school system at age 3 we knew her experience would be different from her sisters. Her sister went to a private daycare and then private kindergarten. Bridget needed more. Her sister transitioned to the public school in first grade and eagerly ran onto the school bus. So quickly did she run onto the bus, that we do have a first day on the bus picture.

We knew that Bridget would never take the bus. Continue reading →