In 2017, my then 2 year old daughter was diagnosed with a rare disease called Tango2 disease. Since then, we have been searching for answers and treatments. We have learned so much about treasuring each moment with our daughter and have met so many other rare disease families that have touched our hearts. This blog is for all of those strangers and friends who have held out their hands and helped me along the way.
When Thea Went To School...
When Thea first started preschool, I would walk out to the
busy playground to pick her up after school.Each time, instead of playing with the others, I would find Thea sitting
alone quietly or snuggled next to a teacher.This broke my heart a little bit each time though I understood why. Thea had just learned to walk and when other
kids bumped her, it threw her off balance and she would cry.She couldn’t handle most of the playground
equipment and she had just started speaking a few words and phrases.
Thea's First Day of School
Once, during pick up, a boy from Thea’s class approached me
and asked, “Is Thea is baby? She can’t talk.”Not really knowing what to say, I responded, “No, she is the same age as
you,” and walked on.I told myself that the boy was just curious,
but it still made me sad.
During mito awareness week, I gave Thea’s teachers a book
that was kid friendly and explained mitochondria disease so that day they sat the kids down in a circle and shared the information about Thea’s illness.At first, I had mixed feelings about the
teachers talking about Thea’s differences in school.Would it make her more separate? Would kids avoid her even more?
I had recently read a chapter in the book Nuture
Shock that talked about how kids pick up on differences whether you point them
out or not.Parents tend to think that
discussing differences makes them more noticeable, however, the book argues
that children actually benefit from parents allowing them to notice and discuss
differences and then being taught how to respond to people who are
I had also attended a conference where a dad told us that he
explained his daughter’s illness to her class each year and he found that this
helped his daughter actually make friends because once kids understood, there
were always a few willing to befriend her and help her.
With this information in mind, I was ready for the teachers
to explain Thea’s illness to the class.They explained why it was hard when Thea got bumped and how it threw her
off balance, why she didn’t walk when she first started school, and why she was
allowed to have an extra snack.I
crossed my fingers and hoped that the dad was right.
After the discussion, I noticed that Thea began talking
about two of the older kids in her class.The teachers mentioned that the two girls had started helping Thea on the playground and with other classroom activities.When
I came to school for Thea’s birthday, they begged to be Thea’s birthday buddies
and asked to come to our house to play.
We invited Thea’s classmates to the mitochondria disease
walk when it came up in May.Several
families showed up and supported the event.We were slowly getting birthday invitations and connecting with more
This year, when I pick up Thea, instead of finding her
sitting all alone, I have to scan the playground before I find her jumping on
the play bridge or digging a hole in the sand with a group of children.She’s much stronger now, talking more and
able to maintain her balance, and the kids seem more comfortable with her.I overheard a little boy telling his mother
all about Thea and how she is very special and you should help her on the slide
if she asks you.
The school recently had a picnic and I was shocked when Thea
immediately detached from me, hugged her teachers, and ran to play with a
little girl that I hadn’t met.The girl’s
mother introduced herself to me and said that her daughter talks about Thea
every day.Thea had been trying to tell
us about this friend but I hadn’t understood that the word she kept saying at home was
the girl’s name.I watched the girls
play in the sand for hours while I sat and chatted with the other families, my
heart feeling warm and full.
Last year, in my first grade classroom, I had a student with
some learning disabilities.When he
spoke, he stuttered and took a long time to finish his sentences.Sometimes, he would drool if he got excited or
nervous.I told my class about the boy and explained that he was born with something in his
brain that made it difficult to get words out.We paused and imagined what that would feel like.The kids thought it might be
frustrating.It might make you feel like
you didn’t want to talk much.I told my
class that we had a choice.We could
make it safe for him to share with us or we could treat him in a way that made
him not want to share at all.We have an
opportunity to choose kindness.
I watched carefully after this.I noticed that the boy spoke up often in
class, volunteering his answers and thoughts, and everyone waited for him to
finish speaking no matter how much his stutter slowed him down.When he complained about some older children
on the playground during our morning meeting and the kids brainstormed how to
help, two of my girls and one boy, followed him out to make sure that he had
someone to play with and someone to help him if those older kids gave him trouble.
When I was watching Thea and this little boy in my class, I
was also watching the kids around them and I noticed how many of them grew a
little more patient, a little more aware of what is going on around them, and a
little more sure of themselves as they reached out to help someone else.It makes me remember what a gift Thea is to
the world around her and how watching her shine despite her illness has opened
up my heart more than anything else I’ve ever experienced.I believes she gives the people around her this opportunity as well.
I recently read the book Wonder, which is all about
kindness, and I love this quote from the main character’s principal at school- “If
every single person made it a rule that wherever you are, whenever you can, you
will try to act a little kinder than is necessary – the world really would be a
better place. And if you do this, if you act just a little kinder than is
necessary, someone else, somewhere, someday, may recognize in you, in every
single one of you, the face of God…” The principal gives the boy in the story an award and reminds us that- "He
is the greatest whose strength carries up the most hearts."
When Thea was about 3 years old, her auntie sent her a pink potty in the mail. Thea loved the potty. She admired it from all angles and sat on it immediately. Shortly afterwards, one early Saturday morning, Thea woke up with a dry diaper. As soon as I took off the diaper, I set her on the potty just to see what would happen and… instant success. She peed right into the potty! I was so proud. I bragged about it to Thea’s preschool teacher as we arrived to school that morning. “Great!” She said. “Please send her to school in panties tomorrow, and we will work on it at school as well.” TOMORROW? I thought to myself. I wasn’t really sure how to potty train her tomorrow but I sent her to school in panties. Each day that week, she just peed in her panties. Over the weekend, I bought a LOT more panties and a book that some friends of ours had recommended about potty training that they had had success with. The book recommended that
The other day I was reading a book. It was a reflective book, one that I turn to when I need a little inspiration. I’ve read it many times before when suddenly I came across a passage that blew my socks off. It was so striking, I couldn’t believe that it had been sitting there in that book the whole time. How could I have missed this amazing passage? I’ve read this book so many times! It made me wonder if I had just skimmed over that part before and not really read it or if I had read it the whole time and was just now ready to begin to grasp that concept. When I first learned about Thea’s diagnosis, I remember the feeling of not being ready, of not being able to really hear the diagnosis. That part of me thought that after we got out of the hospital, things could just go back to the way they were before. Our daughter would be perfectly fine. The diagnosis lingered in the back of my mind, mysterious and hard to understand. The research article
Thea is usually a pretty happy kid…unless she is tired. When she gets tired, she gets stubborn. This stubbornness usually involves public humiliation for me. This summer, we went to the zoo. It was a warm day, so I rented a stroller, bringing water and snacks so that I could make sure that our day was fun and not overtaxing her body. At the end of the day, we returned the stroller to the zoo area. I suspected that Thea was getting tired and beginning to get to her “ unreasonable” stage. I knew this was the case when, turning around, I found her behind me arms crossed and glaring. “It’s time to walk like a big girl,” I told her. She continued to glare. Our friends had already reached the zoo exit by that time and were probably wondering where we were. I took a few deep breaths, hoping they weren’t in a hurry to leave. the "unreasonable stage" “Our friends are waiting,” I reminded her. “Carry me!!!” She demanded reaching up a