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.
Our first Conference...
June was the first ever Tango2 conference.Tyson and I were eagerly anticipating this
momentous event.We would actually get
to meet many of the families that we’ve talked to in our support group.The board members and planning committee had
been meeting for months, going through the organization of the conference.It seemed like a miracle that the conference
was actually here.At the same time, I
was feeling an anxious tremor in the pit of my stomach. I’d been to other
conferences before, and I knew how hard and exhausting it could be to talk
about a disease for days on end, especially when it affected you in such a
personal way.Meeting the families would
be a blessing, but it would make everything about Tango2 real.
When I got there, I don’t know when I cried more- hugging
the moms that I’ve talked to and leaned on for support for the past couple of
years, seeing the “Faces of Tango2” video honoring our children and the angels
who have passed away from the disease, when Ryan and Katie (both Tango2 teenagers)
knelt down together and gave Thea her special tango2 bracelet, or when Lacey,
Thea’s kid’s camp provider spent her $100 gift card meant for gas and food, on
doll accessories for Thea because she knew that Thea would love them.It was such a special time.
Thea with Miss Lacey
It was so amazing and freeing to be able to say, just for a
couple of days, that my child has Tango2 and have everyone around me understand
what that means.It was amazing to hear
my fear and hopes for my daughter voiced over and over in the crowd.It was amazing to hear the doctors describe
my daughter’s symptoms instead of me describing them to my doctor.It was amazing to feel so understood.I saw this in the eyes of the other families
over the next couple of days.We had
dinners together, swim parties together, and breakfasts together.Though I had never met a single one of these
people in person, we seemed to skip the “getting to know you” phase and there
was an instant familiarity and comfort.I
threw my arms around moms that I’d wanted to hug for years.We all watched each other’s children with
interest, either wondering about our child’s future or remembering our child’s
past.There was already a feeling of
family.Ryan’s sister played with Thea
in the pool, and I felt completely at ease leaving her to enjoy the pool while
I sat nearby chatting with other Tango2 parents.
Swimming with Ryan's sister, Kaitlin
Even the doctors and researchers felt familiar.In other conferences that I’ve been to, the
families were separated from the doctors.To talk to a doctor, you made an appointment and I remember joining the
line with other desperate parents anxiously waiting for a turn to ask questions
about their child’s particular rare disease.Here, my daughter was playing with Mashid’s daughter.Dr. Lalani hugged me warmly.Families were eating dinner with Dr. Miyake,
and I was able to chat with her and the other doctors without any formality.
It was scary to think about how new this disease is.I appreciated everyone’s honesty.The doctors told us their thoughts about the
disease so far, but they warned us that they couldn’t draw any real conclusions
without further study.They described us
as the true researchers of the disease in our day to day experiments with what
helps our children and what makes them worse.They acknowledged that we would be the better experts with many doctors
because we would be the keeper of most of the knowledge that was available at
this time.Brownie Scott, our key note
speaker, said that having a child with a rare disease makes her a better person
and she loves him as he is, but if there was a cure or a magic pill for her
son, she would take it in an instant.Kasha admitted that she feels like the clock is ticking.Their brave honesty connected us and made it
safe to be real and vulnerable.
Mixed in with all of the emotions of the week, I was also marveling
at the small miracles everywhere.I was
noticing how far we’ve come from being alone to a Facebook group, to a research
foundation, to a conference, to new research.I was awed over the fact that we finally have our daughter’s mysterious
symptoms explained and that there were others with the same story all around
me.I was grateful that the German
doctors shared freely the antibodies that they used in their research, saving
other doctors time, in the spirit of helping our children.
I asked Kasha why these doctors were willing to study
something so rare, and she said it was because they had parents who were
willing and ready to work with them.When the families work together and share with the doctors, much more
can be accomplished.Although this is a
club that I never wanted to be a part of, I feel grace in the deep connections,
the way strangers have worked together, and how such a small group of
determined people can accomplish so much.
I found that even through it was difficult to make Tango2
real, it was bearable.There was comfort
around the shared experience.There was
inspiration in everyone’s stories and there was strength in our combined hope
for our children’s future.
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