All three of these friends I have known for years... but had never met in person. All of us have trached children and met when we all belonged to a trach support group online. Ann lives in Arizona, Sarah in California and Susan in Washington. Seeing them standing in front of me after all these years was absolutely wonderful. Susan wrote about the weekend here. You should look at it - her pics are way better. And she wrote all about it, whereas I'm not going to be able to today.
|Susan, Sarah, Ann and me.|
|Sarah, Ann, Susan and me.|
What I really want to talk about is Jack and his mom, Ann. Jack passed away last Sunday. Every time I have tried to write about this, I just come up short. I just don't feel like I can do them any justice.
I joined the trach board in early 2007, just four or five months after Harlie was born. That trach board was my only contact with other moms who were like me. And who had babies like mine. Moms who were scared, sad, overwhelmed and quite frankly, out of our leagues (and often times, out of our minds!). But they didn't just vent about all that stuff. They asked questions about equipment, supplies, how to give a baby with a trach a bath, what that irritation was around a g-tube, etc. And the more experienced moms answered, shared their wisdom and tricks. And they got us through the most difficult years of our lives. Ann was one of those moms to me.
I remember liking and/or agreeing with every single thing Ann ever commented or posted. I knew instantly that this woman knew her shit. And I liked her. Over the past six years I've gotten to know her, Jack and the rest of her family well.
Jack was 15 and had a rare form of congenital muscular dystrophy. I just want to share one paragraph from his obituary written by Ann...
Despite being born with a rare form of congenital muscular dystrophy that stole so much from him, Jack radiated love every day of his life. Our beautiful son, who could not purposefully move his body; who could not sustain his breathing without the assistance of a machine; who never enjoyed the experience of eating food; and who never spoke the words his mind so clearly held, woke up every morning with a smile on his face and eyes that sparkled with the anticipation of a new day. Jack faced the hardships of this life with unprecedented joy and grace and he challenged all of us to do the same.
You can read it in full here.
On top of having a career as an attorney, having four children, one with complex medical needs, she started the Willow Tree Foundation and Touchstones of Compassionate Care. And she blogs. Seriously, I don't know how she does so much.
Here is a link to a wonderful video she did for her "Dear Future Physician" project.
She's an amazing person and I feel so lucky to know her and to be able to call her my friend. I wish I could have met Jack in person, too. But, as weird as it may sound to some, I really feel like I knew him. I feel like he was a part of my life. And I miss him. And I can't stop thinking about Ann, Mark, Hilary, Mary and Eric, as they adjust to their lives without him. We all try to put off the inevitable, death. Some of us just have to work a whole lot harder than others. Ann and Jack fought the good fight for 15 years. We've been fighting for seven. I know what the last seven years have done to me. I know what they've done to Harlie. Ann and Jack are my heros. Every day is a bonus. And every day you hope to have one more.
For all you gave, selflessly, with grace, honesty and humor. And for keeping it real. Thank you, Ann. Thank you, Jack.