Friday, March 1, 2013

Donna's Day

About 7 years ago, I was on the phone with my best friend and sisterwife. "Jamie, I have something to tell you." and she responds, "I have to tell you something too." We argued about who was going to go first for a few minutes, she telling me to go first, and me telling her to go first, and she did. It was about her two year old.

"Deziray is not going to make it. We have just decided to unplug the machines keeping her alive." She tells me the whole story, and in the middle of me apologizing profusely, she asks, "What was your news?" I was like, "I can't tell you. Nevermind it." She was like, "Tell me," and I'm like, "I have to tell you but I can't now." She's like, "You're pregnant." There I am wailing in tears, "I'm so sorry, yes. I'm sorry." The day I found out I was pregnant with my first child was the day my best friend found out she was going to lose her youngest.

Deziray was diagnosed with a brain tumor when she was 6 months old. They performed a surgery and removed it. According to the autopsy, she had fully recovered from the cancer. She was a cancer survivor. But, with all that cancer involved, she was prone to infection. She went to the ER sick, and they transferred her from her usual hospital to another one. We don’t know exactly what caused Acute Respiratory Distress Syndrome, but we have suspicions. It's possible the nurse gave her too much oxygen regardless of my friend challenging the levels of oxygen. It's possible a nurse at the other hospital complicated the infection trying to use a less than sterile trach tube. It's possible the body organs just shut down from infection causing the ARDS, and it's possible the ARDS caused the organs to shut down one by one. Either way, that girl survived cancer.

I do feel guilty for being away when my friend experienced all this. I feel guilty for never really knowing Deziray. This was probably the most ultimate sacrifice I made by joining the military.

I don't do well with feelings. I don't really like having them. I hate sorting through them. I hate trying to identify them, and even worse, I hate finding words to describe them. Love is an easier topic to discuss than sadness, regret, understanding, acceptance… Between losing my father to cancer and losing my niece to post cancer treatment, I really don't know how to respond when I read stories of other people who experience anything similar. My heart wants to jump through whatever obstacles the internet might bring and just hug the person and tell them everything I feel and tell them everything is going to be okay and how awesome they are and how amazing their children are, but then the other part of me wants to bury all those feelings. What if I insult? What if I say something wrong? What if I add to their hurt by accident because irony is a bitch like that?

And now as a parent, when I read stories about pediatric cancer, my heart can't take it. My kids. I just want to hug my kids and hold them because some day, I might not get that luxury, and it's not fair that I get to when other people out there don't. I should not feel guilty for hugging my kids. I don't want to think about any of it. I don't want to think about a child suffering. I don't want to think about parents losing their child. I WANT to think about DIY crafts and how I need to clean the house. I want to laugh at internet memes of cats wearing glasses and unicorns farting rainbows.

But today is Donna's Day. Her mom wrote out the events of Donna's story one September ago, and it needs to be read. Yes it will make you cry. Yes it will make you want to jump in the internets and hug the pictures of that baby. Yes you will embark on an emotional rollercoaster in a matter of hours. But it will also give you hope. Amidst the fears of death, this story inspires you to truly live. She will make you feel. 

Not only is Mary Tyler Mom, Sheila, one of the best writers I ever had the pleasure of reading, but she is also one of the kindest people I have ever had the pleasure of cyber meeting. She thinks like a poet, and she describes the things we never think to describe. No better person can tell Donna's story than her (no offense to Mary Tyler Dad), not just because she's Donna's mother, but because she is who she is, a very beautiful person on the inside and out.


Donna left more behind to her family than memories. She left a legacy. Hope. Her love shines through the tragedy and reaches out beyond the grave to others facing the same fight. Donna's Good Things is a nonprofit organization with the following mission statement

"Our mission has grown and is guided by Donna’s approach to life. We aim to:
Provide joyful opportunities for children facing adversity, be it economic, familial, social or health related;
Encourage your good things by providing an online community where folks can share in words or photos something they've done influenced by Donna's inspiration.

Donna was in treatment for cancer for two and a half years, from the age of 20 months. Much of that time we spent in worry and anxiety. Donna herself, though, was a happy little kid. We played through her fears, delighted in her growth, and loved her. During that time, Donna taught us the value of finding joy in the dark moments, and finding hope in even the most hopeless times. To those who are facing dark and hopeless times, we hope to help you find that joy. And for those of you with health and happiness, we want to help you reach out too."

Donna's Good Things is totally involved in an event to raise money for the St. Baldrick's Foundation. You can get involved too. You can donate. You can join in and shave your head (that takes more courage than I have). You can also share Donna's story and links to the event. Giving 10 dollars to help fund the fight against cancer is awesome and the world needs that, but if you can touch someone like Donna has, you are contributing something more valuable than money. If you are in Chicago, you can attend the event in person at the Candlelight Restaurant on March 30th.

From Sheila,

"The purpose of the Donna Day campaign is to raise $ for our head shaving event on Saturday, March 30 in Chicago.  It is our second event.  Last year's started with a goal of $20K and we raised $79K!  This year we have many fewer heads to shave and have set a goal of $30K.  Our oldest shavee is 89 years old and she is doing it with her daughter, a returning shavee for us.  WOW!"


I thank you Sheila, from the bottom of my heart, for sharing your story with such grace and beauty. I thank you for all the good you do in this world. You are one of the reasons God has yet to smite us all into pillars of salt. Your light gives me hope about the world we live in. Donna inspires me to be bigger than my problems. She has taught me that no matter how fragile our bodies may be, our spirit can remain strong.

To all you readers out there, you can go beyond hoping and become part of someone's hope. Now go be awesome. LIVE and GIVE. Ha, Dr. Seuss watch out, I'm starting to rhyme. We going to battle like rap artists some day, me and Dr. Seuss.