Thursday, July 9, 2015


I remember back in graduate school when I was studying to take the Praxis exam.  It was similar to my prep for the SATs.  I spent years learning the material, I took a multitude of classes, I bought huge books, I reviewed flash cards.  The practice exams give a range of the information you "might" find on the test.  You can spend hours learning information that isn't even included and no time learning what the test ended up including.  You don't find out that information until it's testing time.  Until you have read your last highlighted note and your last flash card, and you open your test book.  You hope and pray you got it right, that you spent your time learning the "right" stuff.

It is similar to becoming a parent.  You spend 9 months "preparing" yourself.  In some cases a nursery is created, names are determined, and clothing is purchased.  You buy diapers and wipes and take a birthing class.  The day comes...child birth is NOT like the movies.  You meet your precious baby, fumble holding him/her, learn the basics quickly, then the hospital bracelets are cut and off you go, no manual.  Just you, your spouse/partner, and this new creation embark into the unknown.  All of the "preparation" you have you hope to G-d pays off.  But again, you won't know if you spent your previous 9 months learning the "right" stuff until you reach certain moments along your journey.  

When Sonya was diagnosed, Sam and I took to researching everything CDKL5.  Sam watched countless videos of children have seizures to help "prepare" him, he has watched every "CDKL5" tagged YouTube video to "prepare" him for what Sonya might (not) be able to do.  I ask the doctors for best and worst case developmental scenarios for my "preparation".  I ask about medication options and what each side effect might be, and for alternatives if there are, so I can be "prepared" should the time come when we have to change medications or she has changes with her seizures.  

Then comes reality.

I was talking to my mother this week, and I had the sad realization that I can spend all my time researching and learning, but I won't ever be prepared to make some of the choices that lie ahead.  I won't ever be prepared for Sonya's developmental future.  Nothing can prepare me.  However, I am at that point where I have sharpened my #2 pencil, sat down at my desk, opened the test booklet, and have to trust myself and my knowledge, and pray that I have enough of a foundation to get it right.

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