Happy Earth Day, the audacity of Hope (& if you are looking for my lipstick it is in the freezer)
April 22, 2019 at 8:54 pm | Posted in Grief, life lessons, Love, silver lining | 7 CommentsTags: gratitude, hope, life, March of Dimes
Happy Earth day to you all! I found the picture below in my daughter’s room this morning. It made me so happy and hopeful. She said I could post it as long as I give her credit. All artistic credit goes to @lyssa_and_art on instagram.
As many of you know Evan, the twins and I have been waiting for him to get a call for new lungs. The waiting is excruciating. Despite everything, Evan continues to hope. Not only does he hope for new lungs but he also still dares to hope that no parent will have to outlive their child/children. He is still on the board of the Atlanta March of Dimes. Although our family will not actually be walking this year Evan has not given up. Jake’s Journey and Sawyer’s Strides is still hoping.
Thank you to all those who supported our team this year and in past years. Thank you also to the hospital for matching funds. We appreciate all of your kindness and generosity. If you would like to support Jake’s Journey & Sawyer’s Strides please click this link.
As for me, i am still hoping too. Hoping for the earth. Hoping for Evan’s new lungs. Hoping that no parent has to bury their child/children.
I am no longer hoping to find my lipstick because after searching for a week I found it in the freezer. Seems like as good a place as any to keep it.
“Der Mentsh Trakht Un Got Lakht” (people make plans and G-d laughs)
September 3, 2018 at 3:58 pm | Posted in Grief, Sawyer | 4 CommentsTags: COPD, emphysema, Evan, hope, life, love
A very wise man, my grandfather, always used to say “mentsch tracht, Gott lacht.” For those of you (like me) who do not speak yiddish this means “men make plans and G-d laughs.” I have updated the saying just a little to “people make plans and G-d laughs.”
Evan is sick and he needs a double lung transplant (he never smoked, doctors do not know the cause but cannot stop the further deterioration of his lungs).
After Sawyer died we all had a bunch of tests.
Doctors always thought Evan had really bad asthma that just did not respond well to medicine.
It turns out not to be just (or really) asthma, at least not anymore. His lungs are deteriorating and it presents as COPD and emphysema. He never smoked and his sister has a rare lung disease that is female specific (Evan was tested and doesn’t have that particular disease).
We went to Denver Jewish and NIH in the hope to figure out what it is and to stop it. The doctors told us they could not figure out what it is or stop it. Eventually Evan’s only option would be the double lung transplant.
He was status quo for a bit and we were hopeful the transplant would not be until the twins were much older.
However, the last few years he has really declined and it has been tough. He needs to be listed for the double lung transplant now.
Evan has never wanted people to think of him as sick. So generally, he has kept this from people, and had me keep it secret as well. But now, there’s no longer a point in that. He has told his work (who have been great!) and we are now okay to tell everyone.
Because updating everyone can become exhausting and difficult, we’ve set up a CaringBridge site where we can post updates that everyone can sign up to access. It may be a bit less personal than calls and emails, but it’s more practical and realistic, especially as things move forward.
Please DO NOT feel obligated to donate to CaringBridge or anything. This is just to make communication easier. Also, I have been told that CaringBridge doesn’t do much with your signing up with them — an occasional email seeking support, but otherwise, your email address doesn’t go anywhere. So, I hope that’s okay.
We appreciate all the support, prayers and help everyone has always shown us. Thanks so much.
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