One thing that I consider a real blessing is that we know exactly "what's wrong" with Em, and that there has never been any real guess work as to what was going on. I would have much rather found out about Em's brain malformation early on in pregnancy like we did, instead of being shocked by it when she started missing milestones later down the road. Then we would have had to go through rounds and rounds of testing, and possibly never get definitive answers. I've learned that unless you're having seizures, doctors aren't typically quick to do an MRI to look for malformations, which can leave parents questioning, and wondering for years before finally knowing what's really going on.
All of this is say that Em has holoprosencephaly and we're kind of proud of it. We're like HPE warriors over here. Okay, maybe not warriors, there are HPE kids that are definitely more sick then Em, but we have battles that are hard for us, and we fight the good fight when we need to.
That's why last week when I found out that our occupational therapist didn't even know what Em's diagnosis was, I felt a mixture of wanting to yell at him, and throw up... Granted he's basically Em's best friend, and we really, really love him, but c'mon... read her chart.
We were in our living room playing with a shopping cart when Em was starting to squat and pull herself up and down on the shopping cart toy. Our therapist mentioned, "Yeah, you'll find a lot of kids with CP have killer arm muscles to make up for what they lack in legs." I was quiet for a moment and almost didn't say anything, but eventually blurted out, "Did you say CP? She does NOT have cerebral palsy..." To which he responds, "She doesn't?... forget I said that."
The conversation ended there. But my brain was spinning, my eyes must have been bulging out of my head, and I wanted to go on a full length monologue of something that went like this. "No, she does not have cerebral palsy, she has middle interhemishperic variant holoprosencephaly. Her brain did not fully divide into two hemispheres when I was pregnant for her and there was a one in ten thousand chance she would be born alive. One in ten thousand. She is a warrior. She is a champion, and she is going to do great things. Now go read her chart before you come over next time so I don't have to go coo-coo for cocoa puffs."
And it was in that moment that I knew that no matter how hard this journey seems, or feels, or how weighty things may get, I'm proud of our life, I'm proud of where we're at, and I'm so proud to be an HPE mom to what I believe is the sweetest little girl on the planet.