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.
The Packing Game
I’ve haven’t posted in a while because we’ve been in the
process of moving.It has been the most
stressful move.I didn’t anticipate how
hard it would actually be.I’ve moved
before in the pre kid era but having everything in chaos around us with
a child in the home was so much harder. On
top of our day to day activities- gymnastics, swim, doctor’s appointments- and
our jobs, we were trying to squeeze in keeping our house perfectly clean so we
could sell it, finding a new house, and packing all of our stuff.The move involved a stay in a hotel room for
a week too, which did not make life any easier.It was all completely overwhelming, so I gave myself a break from
everything that wasn’t essential.
Thea didn’t seem to mind the move and the tight schedule as
much as I did.She invented a game
called “packing” which basically meant she would grab a reusable grocery bag,
fill it with stuff from all over the house, and then put it in a corner.Then she would get another bag and fill that
one.Since she was keeping herself
occupied and everything was disorganized anyway, I let it happen.
Finally, we settled into our new home and every box got
unpacked.I could feel the tension and
stress lifting as everything was put back in order.Unfortunately, Thea was really into the
packing game…still.I would be unpacking
only to find a bag full of random items in the corner.These items had to be resorted and
reorganized all over again.“No more
packing game,” I told her with a frown.“It
is time to unpack things now.Help me
put this stuff away.”But as soon as my
attention was focused on setting up house, she was packing again.I made her put everything back in its place,
and we switched to coloring instead.
On Friday, we came home with a basket of Indian food in
various containers.Thea eyed the basket
with interest.“Can I play with that?”
she said.“Yes,” I responded, "but no
packing game.”She looked unhappy but
took the basket.I found it a few
minutes later with a few necklaces in it.I put them away.She came back in
the room and asked where the necklaces were.I told her that I put them away because we are not playing the packing
game anymore.“We need to put things
away,” I reiterated.
I went into the office and found another bag full of things
in a corner.When I unzipped the bag, it
was full of toys and the Indian food we had brought home, upside down in the container,
juices dripping in a puddle on our new carpet.
Time for some fun!
This time, I was angry.“No More Packing Game!” I said in a stern voice.Thea’s face crumpled as she let out a loud wail.Tyson took her to her room for a time out and
she lay in her bed crying.Tyson and I
began the work of sopping up the juices and cleaning the mess.Thea cried and cried.When we were finished, I went into her
“You are a good girl but this was not a good choice,” I told
her.“It is not okay to play the packing
game anymore and it’s not okay to not listen to mommy.”She nodded through her tears.“It makes a big mess and it takes up our
family time to clean it up.”She nodded
again, sniffling.We lay in bed for a
bit and after a few minutes, she fell asleep.
Since then, the new place feels more like ours with our
pictures on the walls and furniture that we picked out one rainy Saturday.Thea is no longer playing the packing
game.Now that things are slowing down,
we too are finding it hard to stop playing “the packing game.”We’ve been stuck in rushed, messy, chaotic pace of life for such a
stretch of time, I’m reminding myself what it’s like to have a moment to go for
a walk or play games by the pool with Thea.Once again, we are reminded to be grateful for simple things like our
day to day routine and an organized home that feels just right.
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
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
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