When We Redefined Success...

In 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. 
However, 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.  




Now 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 coordination.
I 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 gymnastics.
I 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 class.  Yes!!! 
Then, 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. 
The 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.


I 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 business. 
Then, 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.

The 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. 
I 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. 
As 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.”
Then 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.  
I 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. 
We’ve 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!




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