When I learned from other families

After our daughter’s diagnosis, of tango2 mitochondrial disease we were left with so many questions.  We were still wrapping our heads around the diagnosis and each day was more exhausting than the next as the information slowly sank in.  Our neuro-metabolics doctor recommended that we attend a mitochondria disease conference in Washington that summer.  Several doctors would explain the disease and we could meet them and learn more. 
Attending the conference, we expected to learn a lot from the doctors, but we didn’t anticipate how much more we would learn from the families experiencing mitochondria disease.  There was so much kindness in the room.  Each family shared their stories and their invaluable tips for day to day life.  

UMDF conference in Washington

We kept running into one large family in particular with several older children and a baby.  The mother was especially warm.  The tiny sweet baby in her arms had Leigh's disease.  Leigh's disease was known for being one of the harshest mitochondrial diseases.  Their older children took turns snuggling and playing with the baby.  Watching them play with her made my heart ache for them.  It wasn’t until the last night of the conference, as we were sitting at dinner, that this mother admitted that they had adopted this baby.  She was a retired nurse and the baby’s birth mother was not able to take care of her.  She had the time and the medical expertise, so they had decided to take the baby home.  I couldn’t speak for a moment.  I was overwhelmed with emotion.  This couple signed up for this.  They agreed to open up their hearts to this child who was very ill and needed help.  They decided to take this challenge into their home and teach their children to love this baby completely despite all the harsh realities that baby’s life would bring.  Watching them choose this life suddenly made my perspective shift.  If they had the strength to choose this, I could certainly handle what I’d been given. 
Camping with Daddy and Uncle
Still, there were so many fearful days.  I wished that a normal life for Thea could be guaranteed.  Then, one of the other tango2 families I’d met through Facebook sent an awareness video to me depicting their lives with the disease.   Through the video, I watched this family take on childhood disease with courage and love.  With tears in her voice, the mother whispered “Our children were made exactly right.  No one has taught us more about love, joy and living in the present moment than these children.”  Again, I felt that sense of awe, gratitude, and peace.  Their strength truly lifted me up.

Danny & McKenna from joy prouty on Vimeo.

These words are part of my soul now.  Thea is made exactly right.  No one has opened me up and taught me more about love than Thea.  I have become kinder, more compassionate, and more aware of the day to day joys of life because of my daughter being who she is.  My connections to strangers, my family, and my friends are deeper because I am more aware than ever of the preciousness of life.  Every time I am overwhelmed, fearful or full of grief this has become my mantra and my reminder to keep going.  I can’t be grateful for this disease, but I can be grateful for all that I’ve become because of our love for Thea just as she is.  

Music Class with Thea


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