Monday, October 12, 2015


I haven't written about Sarah in a long time. Sarah turned 13 last month. She is swinging between childhood and teenager, mostly still being a child at heart. She surprises me with her sharp, analytical mind. She analyzes her volleyball games, and knows exactly why her team won or didn't win. She can read people really well. She has a big compassionate heart, and is really good with little kids. I also love to hear her interact with Jacob when they are alone. Their conversation carries on the baby monitor or through an open door. It warms my heart every single time. When Sarah is really sad, the only one she wants is Jacob. She wants him on her lap or simply laying next to him on his therapy mat or bean bag.

I have recently been thinking about what a great help and resource Sarah is to Miracles for Mito. Sarah has known Mito, since she was 3,5 years old and her brother was born. Her first job was to take Jacob on rides in his red wagon when he was in the hospital. She quickly figured out there were treats in the hospital kitchens. She also realized her parents were willing to bend on some rules when her brother was in the hospital. Sarah might have been in first or second grade when she verbalized that her biggest dream was to create a machine for Jacob. She would put Jacob in the machine, and he would come out of the machine cured from his disease. I was impressed how well she could verbalize it at an early age. There were years of disappointment, anger and tears when plans changed due to yet another hospital stay. There was that one time when Sarah was sure Jacob had died, and we were not telling her. Reality was that the hospital was shut down for siblings due to respiratory season, so Sarah couldn't visit. I will never forget us sneaking her in to the PICU, so she could see that her brother was very sick with tubes and lines everywhere, but he was still with us, still with her.

With no extended family in town, my involvement with Miracles for Mito has become a family affair. Sarah has come to every support meeting since the beginning of Miracles for Mito. When we arrived at the Anchor Center for yet a support meeting on Saturday, I didn't have to say a word. She immediately directed her friends to the closet where the extra tables and chairs are. She knows what to write on the welcome board to direct families where to go. She has prepared gift baskets and helped out at every silent auction dinner. She knows our Mito families by first name, and loves when she gets to prepare Easter egg hunts and Halloween parties for them.

We have had an intense couple of weeks with our non-profit leading up to our annual Silent auction dinner and our Halloween party this past weekend. For the first time, Sarah has been running her own projects involving her friends. Sarah is sharing the love of baking with two of her friends. This summer, they spent a whole afternoon decorating cupcakes in my kitchen. They were really good at it. I was joking that maybe they wanted to do a cupcake walk at our Silent Auction? They were jumping of joy! A cupcake walk is similar to musical chairs, and if your number is drawn, you get a box of cupcakes. For her birthday, Sarah received a dream cake from the organization Icing Smiles, and suddenly the baker Bess got involved in the cupcake project. She was brainstorming with the girls, and suddenly our cupcake walk had gotten to another level with cupcakes dedicated to our Mito children and their liking.

Minions for Jacob.

Broncos for Cal.

Elmo for Jacob.

In parallel with the silent auction, the Halloween party for our families had to be planned with volunteers, nurses, and activities. Sarah took on the trick-or-treating parade, and made sure there were treats of all sorts for both eating and g-tube fed children. She involved her friends, and I think they all had a great time together.

I didn't plan for this to happen, but Sarah has found her role in Miracles for Mito and she likes it. There are many things we can try teaching our kids, but some things need to be lived and learned. There might be a time when Sarah doesn't want to have anything to do with Mito, which is fine. For now, I love to share this with her. And I love the compassionate beautiful girl she has become.

Love, Maria.

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