Sunday, May 22, 2011

Speak up for Grace

Today was a day, much like any other Sunday for us. Taking care of house work, yard work, errands, and visiting Grace. Upon arrival at the cemetery today, Brien immediately noticed that someone thoughtfully put small pinwheels next to each of the sites of all the babies. They also put flowers next to each site which did not yet have a memorial stone built yet. How touched we were by such an act of kindness. Someone was advocating, telling us not to forget any of the precious babies and all of the lives they touched. That got me thinking about how important it is to advocate for yourself, and for others, for those who don't have a voice.

A dear friend was recently diagnosed with cancer. When she recently met with an oncologist who had a horrible doom and gloom attitude, she promptly went out for martinis afterwards with a friend. Then, she called and asked for a new doctor. She was certain to advocate for a doctor who had a more positive and supportive outlook, as well as a better bedside manner. When Grace was diagnosed with EMEE, the neurologist who first diagnosed her had a very stoic personality. I remember him saying that Grace "did not have epilepsy" which made me at first think that everything was okay then. However, after seeing him intently staring at her EEG, whispering to the technician, and then making notes which he did not let us view, we knew something was terribly wrong. The next day we asked for the test to be repeated, and for a new neurologist. Although, as we now know, the test results were the same, the new doctor sat us down privately and thoroughly explained the results in language that we could easily understand. He held our hands every step of the way. He prayed for Grace. And when I broke down in his office crying, begging for him to order us an apnea monitor for Grace, although he knew it wouldn't change the outcome, he wrote the prescription. He supported us every step of the way.

Grace was too young to have a voice, but she had plenty of advocates along the journey of her short life. Through her, we have had the opportunity to meet others who are also working tirelessly to advocate for loved ones. A friend's two-year old daughter was recently diagnosed with JRA (Juvenile Rheumatoid arthritis). What did she do? Immediately she set up a blog to inform others about this disease and her daughter's struggles. She then jumped into involvement and fundraising for the JRA foundation. Her family recently completed a fundraising walk where they raised over $3000 for this cause. She continues to make and sell items for the foundation and will continue her fundraising efforts all year round. Oh yeah, she is also full time mom to two small children, and has both full and part time jobs. She is an advocate, a hero, and a super mom!

This amazing mom told me that she really liked the blog entries where Grace suggests things to do....small tasks and challenges that can make your life better. So, in honor of this mom, along with my dear friend who is battling cancer, and for the person who remembered all of the babies with the wispy pinwheels, Grace asks you to speak up for someone. Do something to advocate for yourself, or better yet, for someone who doesn't have a voice. She looks forward to hearing your stories and your voice.