The superhero inside

   Few students look into the eyes of their teacher and ponder what it is that they have to face everyday. Not many look past the clutter of graded papers and freshly printed tests on their desks to the family photos displayed discreetly by the computer screens. Only telling half of the story, these family photos show glittering memories of laughter, smiles, and happiness. But if you were to ask science teacher Stephanie English, her story is not just laughter and smiles, because she has to maintain strength even when she knows that her youngest child is one of the one in fifty thousand born with Nemaline myopathy.

   Nemaline myopathy is a muscular disease that affects almost every type of movement, from eating to walking to breathing. In infants, normal development of skeletal muscles is extremely delayed, and sometimes, development may never happen at all.

   English says, “When he was born, we knew something was wrong, but we had no idea what it was. He cried like he was underwater, and he would look at you, but that was the extent.”

    After 33 days in the hospital, Jaxon English was sent home with no diagnosis. After four long, tiring months of not knowing what was wrong, Jaxon was diagnosed with Nemaline Myopathy. The struggle only continued from there.

   “He couldn’t cough until he was 6 months old. He got pneumonia several times, and spent 4 months total in the hospital last year. I mean, he is getting to the point of being able to pick up his knees but it is so hard on his little body, and it’s difficult for me, for any parent really, because I don’t want to see him struggle.”

   Jaxon is only a year and three months old. One might wonder what his life might look like down the road with this disease.

   “I didn’t realize that the smallest things can have a massive trickle down effect. There happens to be one thing wrong with his muscle cells, and everything else is impacted,” English says. “I worry about how people are going to look at him when we’re out in public. Kids can be cruel, and I don’t want anyone to look at him and think that anything is wrong,”

   English says that her son’s brain is just like any child’s.  He can think, he can imagine, and he will be able to understand.

   “I just want to be his little cheerleader and say, ‘He’s fine! He’s fine! His muscles just don’t move!”

   Imagine what it would be like to leave such a small person at home to deal with other people’s kids.

   “I feel guilty for leaving him most of the time, but I do love my job.”

   For her, however,  balancing teaching and motherhood is worth it. With a smile spreading across her face, she says that her outlook on life has changed dramatically with little Jaxon in her family.

   “When you have a special needs kid, you learn to appreciate so much more out of people. You realize that how they appear has nothing to do with what they are capable of. Jaxon shows me that the little things can be celebrated too. Even though he might not be able to show it, he is wonderful.” English looks down and says, “People like to play the ‘it’s not fair’ game, and the ‘woe is me’ game, but his disease is the hand we’re dealt, and I love it.”

   Looking to the family photos behind Stephanie English’s desk only tells half of her family’s story. But looking deeper, one gets a better picture of how strong English is.

   At last she says, “Inside every child is a superhero who is swift and strong.”