Tuesday, May 27, 2014

Providing Resources

When we received Joan's Trisomy 18 diagnosis we were immediately referred to a genetic counselor.  That was a very good first step.  I wanted as much information as I could get about the disorder, our situation, and what comes next.  In addition to much discussion, the genetic counselor had a few booklets that we could read, but said, "I'm sorry, these are my only copies so you can't take them with you."

I remember sitting in the crowded waiting room after our appointment trying to read through the material and soak up whatever I could.  Let me tell you, shortly after receiving a terminal diagnosis for your child you are mainly in shock and cannot focus on much of anything.  So we wrote down the titles, went home and ordered copies of a couple of booklets from Amazon.  When they arrived I began reading one and noticed that several pages in the book were blank.  Pages of text were missing right in the middle.

Really?  Is it too much to ask for some resources and information to guide us through these terrifying uncharted waters?  This is unacceptable.  Maybe that's when the spark of Joan's Reach first ignited.

Secondly, the brief booklets focused mainly on difficult decisions -- in other words deciding whether or not to end your pregnancy.  Then they stopped.  What happens next??

There were some support group resources listed for pregnancy termination.  But the continue your pregnancy route seemed lacking in guidance, resources and information.

Part of what we are doing with Joan's Reach is trying to fill this gap.  We provide bags full of resources and information that parents can take home with them.  To look through when the shock has dulled a bit.  Enough information to make informed decisions for their family.  As well as contacts and resources to guide them throughout the pregnancy and beyond.


Unknown said...

Where can I get this resources package

Joan's Mom said...

Hi Jennifer,
Please email me at barbara@joansreach.org and let me know a little about your situation, and we can arrange to get you some resources.

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