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 together.

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 in need.

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 for.  

Thea and her daddy!