I thought I’d share one of the hundreds of scrapbook pages I’ve created over the years.
When we received the diagnosis of Sammy’s HPE, we were given examples of the things that a child with HPE might never be able to do. Some of them were easier to accept than others, but by far the hardest to hear was, “You need to be prepared to love a child who may never be able to show you love in return.” That one cut to the core.
The first meeting I had with Sammy’s neurologist took place in my hospital room just two days following Sammy’s birth. He came into my room, introduced himself, and he sat down to talk with me. I can remember his exact words. . . “I’ve just come from evaluating your son and reading the scans of his brain. As was expected from the prenatal ultrasound, I can confirm that he does have holoprosencephaly. As a result of that diagnosis, I could give you a list of all of the things that your son will never be able to do; however, I don’t do that anymore. I find that as soon as I say those things, these kids will prove me wrong; so, I’ve learned to just keep my mouth shut and let these kids show me what they are going to do.” In that moment, I knew that this physician would be a great member of Sammy’s medical team.
I had done my homework, and I knew very well all of the many things that Sammy would never be able to do. Being somewhat sarcastic at times, I decided one day to make a list of the things that Sammy would never be able to do compared to other “typical” children. Here are a few of my favorites that I incorporated into a scrapbook page:
Say bad words
Tell lies
Play in the toilet
Put his fingers in light sockets
Eat from the dog’s bowl
Swallow pennies
Bully other kids
Put crayons in the dryer
Climb into the dishwasher
Sneak off and elope in Las Vegas
Sammy Yammy and HoPE 