REMEMBER A LITTLE BOY

Yesterday morning I found myself in my car on the way to yet a memorial service. Funeral number 3 in 2 months. This time for little Luke. Luke had a short life, only 16 months long. Sitting in the church in Longmont, his life was nothing but short. The church was filled with family and friends whose lives he had touched. His smiling face looking down at all us from enlarged photographs. Dad who kept it together every time I visited them in the PICU, but couldn’t hold his tears back any longer. His voice was loosing it as he was talking about the pain he feels from all the dreams he had for his son that will never happen here on earth. Aunt Chandra who so eloquently shared her letter to Luke's brother, so he can always remember his baby brother.

As I was driving towards the snow covered mountains and the church, I felt numb. I felt numb to face grief once again. The Mito monster once again cut a life too short, and a family has to find their way back to life despite their hearts bleeding for their beautiful, so very perfect baby boy.

I knew Luke's aunt long before I knew Luke. Mrs. Chandra was Jacob's teacher for several years, and we love her. She totally gets Jacob. When she texted me a year ago to ask if I would meet her sister, since the doctors suspected her son to have a mitochondrial disease. I welcomed them in to my home, and the rest is history today.

10 years with Jacob has given me many opportunities to think about how Jacob's life possibly can end. I am sincerely hoping Jacob will be in charge when his day come. Reality is that it's not always the case when you have a medically complex child. Many times parents are faced with the most heart wrenching decisions there are - to decide when the right time is to let go. This is in my opinion the absolute worst. How can you ever let your child go? This family was faced with this very difficult decision, and with grace and love and tears they made the decision no parent should have to make. I am forever grateful they let me in on their journey, and that I got to squeeze Luke's little hand and feeling him squeezing it back. I think it was his sign to say he'll be ok.

Today I spent a whole day watching my girl play volleyball. It gave me great joy. A complete 180 from a memorial service of a little boy yesterday. And as life goes on and we get sucked in to day-to-day routines, let's always make room for our friends who have to work hard to find joy again. Be that friend who shows up. Be present. And remember Luke, a happy boy loving his balloons.

Love, Maria.