Sunday, August 25, 2013


There were many questions for Jacob's first day of school:
  • Why doesn't he talk?
  • Why doesn't he walk?
  • How does he eat?
  • Why is his head tilted back? Why does he have a thing around his neck?
  • Why does it sound like he is snoring?
  • Why does he have a pillow for his legs?
Jacob's nurse Gemma has taken Jacob to school for the last couple of years, so she has answers for all questions you can imagine. She has a way of talking to the other kids, leaving them all with a feeling to know Jacob a little bit better and not being intimidated by the fact that Jacob in many ways does things different than his peers. It leaves his classmates with a curiosity for him, and them wanting to jump in and help him.

The one question that I still struggle with to answer is "what's wrong with him?" This questions didn't come up on Jacob's first day of school, but it will come. It often comes in passing. We are on our way to or from school. We are loading Jacob in or out of the car. It happens at the pool, and other public places. I know the question is not coming from a bad place, but it hits me hard in my stomach every time. It has taken me many years to come to a place where I feel I can turn this question into a good conversation where the asking kid can find out a little bit more about our boy.

The answer can not be: Jacob has a mitochondrial disease or starting to rattle off the list of diagnoses Jacob has. What will a child do with that? It sure didn't tell me much the first time I was told Jacob has a mitochondrial disease. What I have learned to say is something along the lines of: this is how Jacob was born. This is how he is. I have learned it is a good opening for more questions, e.g. why isn't he talking and walking. We can then start talking about how Jacob talks, how Jacob moves around. It strikes me every time how curious kids are about how Jacob does the things they do themselves every day. The accompanying parents also start to relax when they notice an actual conversation. Sometimes they even join in.

So as hard as some questions can be, keep them coming! The more people know about Jacob and other kids like him, the less intimidated kids and adults get. It is typically the first sign that we're off to a good school year.

I am ending with some glimpses from Jacob's first day back at school:

Love, Maria.


  1. Love the pictures! I just finished my letter to Ev's classmates' parents encouraging them to ask questions instead of just wondering or speculating. I agree - bring on the conversations! You have a very sweet, handsome boy there. And he is getting so big! Love the smiles. Thanks for sharing!

    1. Maureen, I miss you! I hope Ev is off to a great school start as well! I hope to see you in September. It has been too long! Take care, Maria.

  2. Happy Back to School Jacob!! May if be a healthy, fun, year for you!!! Love the pictures!! Linda

    1. Linda, thank you so much! I love to hear about all the good things in your life too! Love, Maria.