Our trip to Fargo to meet with the Pediatric Neurologist and a Genetic Counselor was what we thought to be just a normal follow up.  We honestly didn’t think we were about to receive the news of a diagnosis that will forever change our lives. We thought for sure they were just going to confirm that Libby was only missing her corpus callosum. Missing a corpus callosum sounds scary, but we were ready and willing to help Libby along with the possible learning disabilities she might have.  There was also a chance we would could even see only mild issues.

Mike and I decided to bring Layken along for this trip to Fargo.  We needed to meet with the Genetic Counselor on the Monday and then Tuesday we would see the Neurologist.   So we booked a room at a hotel with a cool pool thinking we would have some fun family swimming time.  We arrive in Fargo and head straight to the appointment with the Genetic Counselor, which happens to be at the hospital that Layken was born in.  So naturally this brought excitement and great memories rushing back into my mind.  This also brought many questions from Layken.  She knows her adoption story, but this took it to a whole new level for her.  It was fun telling her the story.  What we did that day while we waiting to get the call to come to the hospital, down to who held her first and what the nurse’s names were.  God blessed us once in this hospital beyond measure, why would I think anything different was about to happen.

I will get right to the point at how this appointment went, because frankly that is exactly how the genetic counselor handle this appointment. To her defense she didn’t know that we were unaware of Libby’s full diagnosis.  Somewhere down the line wires got crossed and we weren’t told the whole diagnosis in Bismarck and the message of her being adopted wasn’t delivered to the doctors in Fargo either.  She begins to drill us with our medical/genetic history.  She looked at me and I am pretty sure she could tell I was so confused.  She then states, “When a child is diagnosed with Schizencephaly most parents will run some genetic testing to make sure it’s safe to have more kids.”  (BLANK STARE) ?!??!?! SCHIZEN what???  This is when the storm cloud over took my head.  I didn’t cry, it was like an outer body experience.  I had no idea what was going on.  I just had a blank stare and no words could come out of my mouth.  I held on to Layken and just focused on Mike and Libby.  I couldn’t even look at the women that just told me that my child has very little chance of accomplishing much in life.  She goes on to tell us about different test we can run to determine the cause.  I am pretty sure she could tell by the look on my face, I only wanted out of that room.  We told her thanks, but we don’t wish to run any genetic test at this time as it will not change anything.

We get to our car and load the girls and that is when it happened.  I completely lost it….  Tears welded up and the sobs from deep down came roaring out.  Thank goodness for Mike, because at that moment I was so weak I would have fallen to the pavement if it wasn’t for him.  I was just so mad, so confused, so hurt and just flat out lost.  Who did that lady think she was to tell me my daughter was missing more than her corpus callosum?  I just don’t understand.  I look at Libby and see nothing but a perfect little baby girl.  How could there be something wrong with this child I prayed and wished for?

We head to the hotel.  What was supposed to be a fun family evening swimming turned in to me just holding on tightly to Libby as she slept and Mike and Layken swam in the pool.  I kept thinking, what next, how do we get past this?  How is this going to affect Layken?  Maybe they are wrong? This isn’t happening to me.  Why would God do this to me?  Is he punishing me for something?  That day was the biggest blur. To this days it’s hard to think about.

Day two in Fargo.  We head to see the neurologist.   I spent the night praying for a better outcome.  Because there is a chance that genetic counselor had it all wrong right?  We head into the office and again I can’t believe how calm I am.  I am sure it was still shock.  Sadly this appointment was no different from the day prior.  He held Libby and moved a couple things in front of her face, to see if she will follow them.  Which she didn’t.  Then he looks at us and says, I am sorry to say, but she will NEVER WALK or TALK……. There was no, but there is also a chance she talks, and walks with assistance or even does both just fine.  The appointment again was pretty much done at that point.  I wish I could go back in time.  I have so many more questions.  He seriously didn’t even give us much of an explanation of what Schizencephaly was, how it was caused and what her future could truly look like.  Okay, maybe he did.  I really don’t remember.  I blanked out completely.  I really only remember him saying she will never walk or talk. He sets us up with a follow up appointment in Bismarck and on our way we go.

Again we get to the car but this time I don’t cry.  What is the point?