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 We Were Grateful...
Last weekend, my friend hosted a bunko party to raise funds
for tango2 disease.She spent hours
creating the invitations, decorating her house, organizing beautiful plates of snacks,
and gathering prizes for the participants.There were purple and green endive leaves and garlicy bread with various
dips.There were cups lined up next to
bowls with scoops to fill them with pretzels, popcorn, chocolate, honey peanuts,
and tiny ginger cookies.Though there
were many different circles of friends mixed together, everyone chatted easily
and cheered as the dice rolled.The
prizes at the end seemed suited exactly to the winner of each one.It was truly the perfect party.Everyone was so pleased with the food, the
gifts, and the company.As the night ended, I hugged my friend tightly
and I thanked her, but I didn’t have the exact words to tell her how much this
meant to me.
Tango2 bunco party!
On Thursday, I took Thea to her gymnastics class and found
out at the front desk that the instructor had hurt her knee.Because Thea needed assistance in the class,
and the teacher’s knee couldn’t bear the extra weight, they had hired another teacher
to help out so that Thea would have the support she needed.I stammered out my gratitude and watched as
Thea smiled and chatted with the new teacher as they crossed the balance beam
Earlier that month, I apologized to my boss at work for
missing the staff meeting.I needed to
take Thea to one of her many doctor’s appointments.My team filled me in on the meeting and give
me the paperwork that I missed.My
principal waved off my apology.
I got an email from the district office about extra classes
that I could take to update my technology skills but it is on a day that Thea
has therapy so I won’t be able to make it.Still my district has enough faith in me to offer me a math lead
apprenticeship and they tell me that I am free to reject the position if it is
too much for my family.
Regularly, I text my favorite substitute teacher, sometimes
at five in the morning, when Thea is sick.Can she come in for me again?She
does her best to rearrange her schedule so that I have the peace of mind of
knowing that my students are in great hands.
Friends and mere acquaintances donate money and their
precious time to walk 5ks for mitochondria diseases, support out tango2
foundation, and ask about Thea.They
bring donuts, tables, signs, and advertise our walk.They become monthly sponsors of research
efforts and they show up with meals for our family on hard days and ask about
Thea when she has a minor cold.Sometimes,
I desperately need their listening ears.
My family sat with me in the hospital miserably waiting and
hoping for Thea to recover, watching us grieve and feeling the unbearable
weight of the hospital room.They spent
their vacation days and retirement days with us and bought expensive flights to
sit in that awful room.
I’ve asked Thea’s teachers to give her extra snack, to wash
her hands regularly, and to allow her to nap during unstructured time if she seems
tired.She was accepted without
hesitation to her small preschool even though they are not a special needs
school and even though she would require extra work.
Doctors have given me their personal cell phone numbers in
case of an emergency and shown up for our small group of children in Facebook
meetings, conferences, and fundraisers.Dr. Lalani attended Sammy’s funeral and checked in with his mom. She filled out an 18 page application for a
grant so that the families we’ve met online with tango2 disease can also meet in
person for our very first Tango2 conference this summer.
The list of gratitude goes on.This seems to be the new position that I am
in as a mother of a child with special needs.The favors and assistance that I’ve been given these days is
overwhelming.I used to be so
independent.I signed up for the extra
courses.I came to work early and left
late.I used to be the one picking up
the slack.Now, I owe so much to my
friends and family and strangers- more than I can ever pay back.It is very humbling to be the one in
need.Asking for help, never feels
comfortable and thank you just doesn’t seem like enough.My heart fills when I think of all of those
who are willing to throw out a lending hand, to donate generously, to give time
and attention to my daughter, to keep an extra eye out, to give me the time off
of work that I need to attend to my family… When I look at my life now, I am
reminded of the goodness of the people around me.I am surrounded by support and the generosity
of others has kept me going.It reminds
me of how connected we all are and how you never know when you will be the one
The other day I broke down, full of fear for Thea’s future,
and, as I cried, my husband gently reminded me that there is another way to
look at things.He reminded me of our
hospital stay and how we weren’t sure our daughter would survive.He internally pleaded that he would get the
chance to know his daughter better and begged for more time with her.He reminded me that this wish was answered
beyond what he had asked for.Not only
did his daughter come back to him but, with the vitamin treatment, she came
back full of life and personality.He
knows her now and is so grateful to watch her grow.We feel her love and receive her lively hugs
and kisses.We can live in fear or we
can live in gratitude because we have been given more than we even knew to ask
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