We each need a guiding star, an example to live into.

When Sam was an infant, my husband and I were introduced by our son's geneticist to a family whose daughter also had a rare genetic disorder. Their daughter was a bit older than Sam, so her mom had navigated the world of special needs for a few years before we met. I appreciated her tips and tricks for anything from how to make the most out of a hospital stay, to getting what your child needs in school. But mostly, I admired her for the grace in which she did it all.

Time passed and we lost touch. One day on a class trip, I ran in to her and was deeply saddened to learn that her sweet girl had passed. My heart broke for her. I didn't know how to comfort her, how to be for her what she had been for me all those years ago. We would see one another once or twice after that, and then life just seemed to get in the way. 

Following the diagnosis of Sam's heart condition, we did the best we could to maintain our normal. When things became worse and he went into heart failure, I knew it was time for reinforcements. We sought out a hospice that would come to our home. They provided wonderful support, but I have always said that until you've walked in my shoes, you can't possibly know what I am feeling. I woke up one Sunday morning, looked at my husband, and said "I know who can get me through this." 

Since we last spoke, cell phones had replaced land lines and they had moved a time or two. My persistence paid off when I was finally able to find my friend and I sent her a message through Facebook. Funny, that is the same site I had refused for years to join because it was I who did not want to be found! She responded immediately, and I felt as though time had stood still, waiting for the two of us to pick up where we had left off. "I came across a picture of Sam last week, and thought of you" she said...and then she listened.

In the two months that we had before Sam passed, she would listen a lot, and when she felt the time was right she spoke. She spoke of the pain and sadness, and of how giving herself time was the greatest gift. She was one of my first responders that spring morning following his death. She brought music, hugs and a knowing smile. 

A few weeks later, after having spent the weekend with another one of her friends who had also lost a child, she sent me the following message; "We talked a lot about the strengths and gifts of our kids, and the profound change they made in our lives. Coping with the loss of our kids is just really hard, but know you are supported by those who love you and even those you have not met."

I still so admire the grace in which she has handled the loss of her daughter, and I will forever be grateful to our children for bringing us together.