Kennedy's Village

A couple of years ago, we had Big Sister tested to see if she was a bone marrow match for Kennedy. First, let’s all get on the same page:

Stem cell transplantation is a potential cure for Sickle Cell Disease. Stem cells can be found in bone marrow. According to C.S. Mott’s Children’s Hospital, bone marrow is the substance in the center of your bones that produces red blood cells. A person with Sickle Cell Disease has bone marrow that produces red blood cells with defective hemoglobin S. But if that bone marrow is replaced with healthy bone marrow, a person’s body may start to produce normal hemoglobin. Stem cell transplants require bone marrow from another person (donor).

The best donors are siblings and Kennedy has a Sickle Cell-free sibling. My husband and I decided to get her tested to see if she would be a match for Kennedy.

Now picture yourself watching the Oscar nominee announcements. Think about the people hoping to get nominated but too nervous to watch. Think about the folks who get nominated. Immediately, lights, camera, action! They get calls about that moment: “Tell us how it felt to be nominated!” the interviewer exclaims. Now for a second think about the people hoping for a nomination, but their name does not get called. They get a call from someone delivering the news that this year isn’t the year. Yup someone has to deliver the bad news – Just like someone had to call me.

Savannah was not a full match to Kennedy. We had no need for the prep. No lights (cure), no camera (testimony), no action (transplant).

No to the solution you hoped and prayed so hard for. No to the thing that could cure my daughter. Yes to continued spleen crisis, partial splenectomy, abnormal brain scans, iron overload, pain crisis, and doctor visits.

How many no’s have you gotten with your health, running your business, looking for that dream job, dating, marriage – no, nota, nope.

This “no” rocked my boat. I remember crying my eyes out to a girlfriend of mine. Sitting on her couch with a hill of tissues in my lap. She sat and listened and emptied one box of tissues after the other. After a while she spoke. “Was all your hope of saving Kennedy in the transplant?” She asked the question innocently (at least I think). The pile of tissues on my lap hit the floor as I turned in her direction with haste. With my eyebrows curled up and my lip folded down I answer with a pronounced “NO!” “Hmmm,” she said nodding in solidarity. Then with a small pause she leaned close and said, “you get to be sad but this no only means, ok what’s next.”

I gave myself a deadline to sit in my sadness. Oh yeah, I ate my feelings (a lot of feelings) and cried A LOT. When my Saturday deadline hit, I went to the gym to work off some of those feelings. Leaving the gym, I posted a picture of myself on social media, pulled out of the gym parking lot, and started focusing on the “what’s next”.

 You thought your business would be further along, more money in the account, you’d already be a headline guest on Ellen, or fill in the blank….

When I focused on the no, I had no room to focus on the faith. No to her sister being a full match. Yes to the education of integrating holistic care into our family. No to that transplant but yes to changing the foods we eat and vitamins we take. Yes to learning more about the benefit of things that already exist. Yes to then figuring out our organization’s mission. Yes to advocacy, joining advisory boards, and working with hospitals on grants. These things that came “next” after my personal “no” will change more worlds than just my own.

Don’t worry about your “no” focus on “what’s next” to get to “yes”.