This is my niece, Kate:
I held Kate less than two hours after she was born in 1990.
16 months later, I was back at the same hospital, holding her while her parents were learning what to do after she was diagnosed with Juvenile Diabetes. 24 hours earlier, she had nearly died. Her blood sugar level was >700.
She is one of the lucky ones, because her parents have good insurance and she has had excellent doctors.
But neither the good insurance nor the excellent doctors have prevented the seizures, the 15,000 shots, the lows, the highs, the having to stick a needle into her abdomen once a week to change the site of her pump. Neither the good insurance nor the excellent doctors have allowed her to lead a normal life -- although, God knows, they have all tried. And, although, God knows, she has.
Kate never complains. NEVER. She did not complain when consequences of her type 1 diabetes robbed her of her ability to play the sports that she loved. She did not complain when consequences of her type 1 diabetes made it difficult for her to study -- she studies so hard! Because she wants to have a normal life. (Oh, and PS: she has an "A" average!)
She says that she has an "awesome life" and that she is grateful for her friends and family. The essays she wrote for college include so much gratitude.
She asked me to read and edit them for spelling and so forth. And I could barely breathe through the tears.
Here's what I would be grateful for: a CURE for her. Just one damn day for her that did not involve needles.
JUST ONE.
And here is what Chris and Dana Reeve would have have been grateful for: Just one day without paralysis.
And for Kate and Chris and Dana: THANK YOU, PRESIDENT OBAMA.
Below is a repost of a diary I wrote in December 2006. I am reposting it because I have been in tears since 11:45 a.m. this morning, when our President repealed the Bush Administration’s halt of federal funding for embryonic stem cell research.
On the August day when former President Bush announced the ban, I was driving to my niece’s house, and I burst into tears. How to explain to 10-year-old that her President did not care about her? How to explain that he believed it was more important to protect the "life" of frozen embryos regularly discarded as medical waste, than to find a cure for her?
And that day, I thought of Christopher and Dana Reeve.
Back in December 2006, this is what I wrote. How I wish both of them were alive today and could have shared in the joy of President Obama’s repeal. Let us all cheer in their memories:
On a hot evening in July 1988, I called home to report on the miseries of Day One of the Bar Exam. My Mom answered the phone. She listened, patiently, to my griping, and then said: "Chris has proposed to Dana."
I did not need to ask "Chris or Dana who?" because my little life in law school in Charlottesville was so otherwise untouched by celebrity of any kind. The Chris was Christopher Reeve and the Dana was Dana Morosini, who was the daughter of my wonderful doctor, who, along with his lovely wife, were great friends of great friends of my parents.
I had met Dana on an occasion or two – weddings and so forth – but I knew much more about her than certainly she knew about me. I knew, from brief acquaintance, that she was beautiful and charming. I knew that she was passionate about a career in singing and acting, that she had met Chris while performing in Williamstown, Massachusetts at summer theatre and that they were very much in love. Nevertheless, Mom had said, Dana had said no.
This was not exactly the sort of news that made me want to spring back to the hundreds of flash cards I had created for the second day of the Bar Exam. But I trudged back to my grimy motel room in Roanoke, hauled out the cards and began. I also took out my skirt for the next day to pin it. Virginia then required female bar examinees to wear skirts or dresses, and I had been ill that summer and had lost so much weight that my only appropriate skirt was three sizes too big. I considered my circumstances, and thought: "Dana is the luckiest woman I know."
On a coolish evening in May 1995, I was in Maine for my sister-in-law’s wedding. I had been out all afternoon riding bikes with my boyfriend. We had attempted, unsuccessfully, to breach the security at President Bush’s Kennebunkport home . . . just to say hello, we told the Secret Service. They were not amused. When we got back to the Inn that was the site of the festivities, my Mom said that Chris had been involved in a terrible horseback riding accident and might not live. We wrote notes and posted them, and I thought: "Poor Dana." And I prayed for her.
Over the course of the next eight or nine years, I watched Dana and Chris with such admiration. I read Chris’s moving autobiography, Still Me, and I wondered how he could continue to endure with such courage and optimism and hope. The daily rhythms of his day, as Chris so eloquently described, were daily tribulations. The simple acts of getting up and getting prepared for the day could take hours, and the assistance of many skilled assistants. He was always so grateful to have the money to pay for the help he needed, and so dedicated to raising millions of dollars so that others in his situation could have that help -- and his hope -- too. And I had such admiration for Dana, who never once groused about the fact that her life had been turned completely upside down in a few seconds on a steeplechase course in Virginia.
Because members of my family suffer from a progressive neurological disease that renders them paralyzed, I am unfortunately too familiar with the heartaches of paralysis. I was so grateful to Chris for his message and beyond grateful to him and to Dana for raising awareness about the hope offered by stem cell research. My entire family is passionate about stem cell research, not just because of the familial paralysis disease but, more recently, because of my niece, Kate, who was diagnosed with juvenile diabetes at age 16 months and has lived, so courageously, with this horrid disease for 15 years. We know that stem cell research offers the best hope for a cure. President Bush’s refusal to advance this research led many former Republican members of my family to switch their political affiliation and vote for Democrats.
On the day in 2001 when President Bush announced that there would be no funding for new cell lines, I sent him an e-mail in which I asked him how I should explain this to my niece: "She’s 10 years old and she's been stuck with a needle 10,000 times already, Mr. President," I wrote, "Just how many more times will be enough for you?" I did not receive a reply.
On a lovely October morning in 2004, I received a telephone call from my best friend, who is smart and funny and a frequent guest on political talk shows. She was scheduled that morning to discuss stem cell research, she said, and asked if I could provide some talking points. I went on and on before asking her: why this morning? She told me that Chris had died. She had thought I knew, and was very upset to find out that she had had to be the one to tell me.
I watched Dana’s enormous grace once again. And, selfishly, as the granddaughter of a much loved grandfather whose stong heart did not give out and who spent the last days of his life choking on his own saliva with his eyelids taped shut because he could no longer blink, I was grateful that Chris was at peace and that Dana might have some time with her son and her own life and a bit of peace for herself. I was amazed that, just days after Chris’s funeral, Dana joined John Kerry to endorse his Presidential race and speak passionately about the importance of stem cell research. What an enormously courageous and lovely thing to do.
Less than a year later, on a hot afternoon in August 2005, I saw on television in my office that Dana was announcing that she had been diagnosed with lung cancer. I was devastated. How on earth could anything be more unfair?
Seven months later, on March 6 of (2006), Dana died. During her fight with cancer, she had continued her work for Chris’s foundation, she had continued her work as a mother to their son, Will, she had continued her work as a singer and an advocate for stem cell research. She was just 44.
Dana and I attended the same college (many years apart), and in 2004, it wisely awarded both Dana and Chris honorary doctorates and asked them to speak at graduation.
This is, in part, what Dana said:
Take care of yourself and be caring with others. Nurture a sense of gratitude, and be grateful for a sense of humor. Be sure to thank your parents and mentors for all they've given you, but give love to your future children and mentees freely without any expectation of thanks in return. Look for ways to let your light shine, but don't be afraid occasionally to be in the dark. Strive to make your behavior above reproach, but be careful not to cast judgment on others whose behavior may reflect a different form of reality. The more you give, the richer you will become. Let your life be enhanced by the company you keep.
Wise words from a very courageous woman. Many dear souls were taken from us during 2006, but I am especially grateful for the life and courage of Dana Reeve. On Christmas Eve, I wrote a tiny diary about the hidden shepherds among us. Dana and Chris were among those shepherds.
They still are. This is their day. Thank you and God bless you, Dana and Chris.