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.
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When We Redefined Success...
2017, my husband Tyson and I had returned from our long hospital stay with a
rare disease diagnosis for our daughter.The only treatment they had was a mixture of vitamins and enzymes to
boost energy.I felt totally
deflated.How could vitamins possibly do
much of anything to prolong her life or promote her health?I didn’t take them myself because I took a
health class in college that taught us that most people didn’t need them and
just peed them right out.
to our surprise, within a week of returning home, Thea was WALKING for the
first time.Suddenly, our physical
therapist was working on getting her to walk longer distances instead of trying
to get her to walk at all.We were
thrilled.Could the vitamins really be
doing this? How else could we explain such a jump in progress? To
top it off, Sammy, the one other child we knew with Tango2 disease, had the
same success with the cocktail so we began to hope.
that Thea was stronger and walking on her own, the physical therapist was ready
to graduate her from regular therapy.She suggested gymnastics to help her work on her balance and
had recently been to a mitochondria disease conference where they told parents
that mild exercise greatly improved the health of the mitochondria in children
with mito disease.If you did just the
right amount exercise that pushed the child’s limits without over extending
their bodies, they could get stronger.Their bodies started to make healthier cells. I was ready to try
enrolled Thea in a small parent participation class and explained Tango2
disease to the teacher.She would be a
little less balanced and not as strong as most kids her age.She might also tire more quickly.The teacher was patient, kind, and great with
small children.When Thea struggled, he
knew just how much to push.There were
children ages 18 months to 2 years old in the class so the various abilities
made it easy for Thea to fit right in.Physical therapy had been like pulling teeth and the progress was so
slow.Now she was moving and climbing
and making progress quickly.Both of us
felt her new success with joy.We were
doing it.She could participate in a gymnastics
Thea’s third birthday came and the teacher said they would be moving her to the
next level of classes.I was
surprised.Did the teacher really think
she was ready to be with kids her own age?We decided to try it.
new teacher was informed about Thea and we joined in on the class.The kids began going through the balance
beams, the trampoline, and the climbing rocks.Thea readily began the course, but she was slow.She could climb the wall but I had to boost
her over the top.She needed my finger
to complete the balance beam.The other
kids flung themselves up the wall and ran across the balance beam with airplane
arms fully extended.They were just so
fast!Before I knew it, the entire class
had lapped us and there was a traffic jam as everyone waited for Thea the
finish the balance beam.
Getting a little help on the balance beam.
was immediately embarrassed.I flashed
back to the time where my grandpa had scolded me for Thea’s inability to
walk.She is not walking because you
are always carrying her around. I
knew it wasn’t true, but it still stung.What if everyone thought that I was to blame for my child’s lack of
ability?Maybe they thought I was
babying her when I gave her my finger or boosted her up to complete the climbing
wall.I wanted to explain about tango2
disease so that they would be more understanding. My cheeks were turning
red.I tried to reassure myself.No one is blaming you.Whatever they are thinking, its none of my
a mom told the teacher that this class was too easy for her son and she wanted
him moved up to the next level but unfortunately that class wasn’t at a time
that worked for her schedule.I
instantly HATED this woman.I couldn't
believe she felt the need to point out how easy this class was for her son
right in front of us as we struggled through it. I left the class feeling
defeated and angry.
next day, I was talking to one of my girlfriends at work.We had been through grad school together and
our pregnancies together.Our babies
were a week apart.She had gone on to
have two more children, one right after the other.My husband and I enjoyed the chaos of
visiting her family.The kids were all
so little and it was hard to keep track of everything.We all burst into laughter when both parents
lost track of the baby and found him just in time to prevent him from helping
himself to a tasty handful of dog food!I loved and admired the way this family was so joyful and so comfortable
in the chaos of raising a young family.
had called this girlfriend on the day that Thea had her metabolic crisis and
ended up in the hospital.I had told her
that Thea was acting funny.She was very
lethargic and wasn’t eating.She had
grown so quiet.She was sleeping more
and more. Had she ever seen anything like this when her kids were
sick?She reassured me that everything
was fine and I felt a little better.
we sat in the backyard, watching the kids play, she suddenly apologized to me
for that day.“I shouldn’t have told you
it was all right,” she said.I was
surprised.“It’s not your fault. How
could you have known?”Her eyes filled
with tears.“Sometimes,” she confessed,
“I feel guilty about my three healthy children.”I was stunned.I responded, “I never want you to feel that
way.It had honestly never occurred to
me that you would feel this way or that I should take anything more than
pleasure at the health of your children.”
I thought of the woman in our gymnastics class who was so proud of her normal,
healthy, flexible, strong son.I felt
foolish for taking her comment so personally.Did I really want to be jealous and spiteful because her son was good at
gymnastics?What message was I sending
to my daughter about comparison and self-acceptance if I was angry with that
woman? What would I teach her about growing up with this disease?
If I felt embarrassed that we went at our own pace what would she learn to feel
in these situations? Each of these realizations hit me one after the
other and suddenly I felt a little stronger.
came to the next gymnastics class with a new attitude.The other children lapped Thea in each
course just like before.I reminded
myself over and over of my new lesson.I
strongly and silently sent the message to myself and my daughter-I love your efforts.You are strong.Because we showed up and did our best we are
a success.I know that we are enough
just as we are.Because I know this so
deeply, I can be glad when others are successful.We are so lucky to be here in a GYMNASTICS
class.We went from crawling to
climbing. Being here and putting our full hearts into this means we are
totally nailing it.
been going strong in gymnastics for over a year now and Thea loves taking the
classes.She doesn’t seemed worried or
phased by other kid’s abilities.She
seems happy just to be out there with everyone tumbling, climbing and yelling,
“Taa daaa!”I call this a success.
She just finished climbing the rock wall by herself!
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