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 was tired...
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 and
pressing her full weight against me.“It’s
Thea’s job to walk like a big girl,” I responded.She refused so I walked a bit farther down
the path.Standing firmly in the middle
of the walking path, she glared at me with eyebrows furrowed, arms crossed, and
an angry scowl on her face.I edged a
little bit closer to the exit.A well-intentioned
mom stopped- probably to help the poor, lost child.“She’s mine,” I said, signaling at the
woman.“Please excuse our stand-off.”She laughed, wished me luck, and walked
on.I took a few more steps toward the
exit, turning myself sideways so that I could see her but also trying to look
like I wasn’t watching her.We paused
like this for a few heart beats.
Suddenly, her anger seemed to fade.Her arms flopped to her sides, the scowl
melted, and she ran over to me, grabbed my hand, and trotted quickly toward the
exit.I praised her for walking, and she
chatted to me excitedly about the animals we had seen, the stand-off instantly forgotten.As soon as we got into the car, she fell
asleep.I knew when she woke up, she’d
be happy and cooperative again.I knew
that our stand-off was more due to her energy level than anything else.
Tango2 seems to make everything about the difficult job of raising
a child more difficult- even discipline.I’m constantly questioning myself.When should I push her to behave herself?When should I give in because I know that she
is just tired?I want to be understanding
of her limits, but I want her to behave herself even when it’s hard.I know that she will do better in school and
in life, if she has self-control.I want
her to go through the mental exercise of keeping her behavior in check, even
when she doesn’t feel like it.Sometimes,
my patience and persistence seem to pay off like that day at the zoo.The amount of time we spent in conflict
seemed long at the time, but really it was over quickly.
I also know that there are times, when she is just too
tired.There were days before she
started the mito cocktail, which improved her energy levels tremendously, where
she was so grumpy, tired and angry that no attempt to help her stop reacting to
how her body was feeling seemed to have any effect.I honestly felt like I was trying my hardest
and her behavior and moods were awful.She
would not return to normal until I could get her to take a nap and eat
something no matter what I did.I still
tried, exhausted, near tears at times, and I wanted to think that it was paying
off, but I just wasn’t sure.
Life improves after a good meal!
One of the T2 moms and I were chatting on the phone the
other day.She was frustrated with her
child’s behavior.We talked about how we
try to avoid over tiring our children while still experiencing life and having
adventures.Then we talked about the
guilty thoughts.Both of us are
educators- why can’t we handle our children’s behavior sometimes?I felt such compassion for her and, as I felt
it for her, I thought about giving myself that same kind of grace.Our kids need a little more time, a little
more patience, and a little more rest than many kids.I thought of the parents with children with
disabilities even more challenging than Thea’s case and the extra patience and
care required just to cope with the simple activities of daily life.I think that if our kids need a little extra,
maybe we can give ourselves that same treatment- little extra patience, a
little self- kindness, lots of fruit and vegetables, and maybe some time to
rest as well.
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