Lucy and Alex: Finding Hope in a Childhood Favorite

Alex – the Life of a Child was one of my favorite books as a child. It was one of the first chapter books I ventured to read after my obsession with the “Little House” series abated. Alex is a memoir written by Frank Deford about his daughter Alex, who was born with cystic fibrosis and died of the disease at the age of 8. Cystic fibrosis is a genetic disease. It is incurable, but the prognosis and treatment for the disease has improved greatly over the last few decades, in large part thanks to Alex’s story.

I remember seeing it at the second-hand bookstore we frequented in Shreveport. I was 7 and I recognized the title from watching the TV-movie with my parents. The movie made a big impression on me and I immediately wanted to read the book. I chose it and Little Women (a TV movie tie-in with Meredith Baxter, Susan Dey, and Eve Plumb on the cover, but with the original text) to take home that day.

I can’t even remember how many times I read that book. It was a little surprising, because I was a very sensitive child and I worried and became scared easily. I worried all the time that I would be kidnapped or become sick and die. I worried that something would happen to mom. However, I think I felt safe in this instance, because you have to be born with cystic fibrosis.

I admired Alex and was awed at the fact that a girl my age could deal with a terminal illness and her own mortality with such grace. Even though the book was a bit over my head at the age of 7, it is beautifully written. Frank Deford is a wonderful writer.

I probably hadn’t picked the book up in at least 20 or 25 years. The first week after Lucy died, I found the book (a new anniversary copy written in 1997) and flipped through it. But I wasn’t ready to read it again yet.

Finally, in the weeks leading up to Lucy’s 2nd birthday, I started the book again. Interestingly, I was now reading the book as a peer of Frank Deford’s, rather than Alex’s. I remembered every single word of that book from my many readings as a child, but different passages resonated with me now. He expressed so many feelings so perfectly.

The biggest difference with the book this time around is that it gave me hope on two important issues. The book helped me come to some decisions. After Alex’s death, Frank and his wife Carol adopted a baby girl from the Philippines and named her Scarlet. (That isn’t the reason we chose the name “Scarlett” for our daughter, but it’s a nice coincidence.) It took a long time for them to be cleared to bring her home, but when they did, he wrote that she spent her first night in Alex’s room. I also read in an interview online that Scarlet slept in Alex’s bed for several years. Alex Deford died at home in her bed with both parents at her side.

I don’t know how many of you know or remember this, but Lucy died unexpectedly in her sleep at home. She was in her room, in her crib. At first, I harbored a superstitious fear that there was some kind of bad juju in that room. (My cat Belle also died in that room, when it was still a guest room. She had kidney failure and I had brought her home to die in peace.) Chris and I felt at first like we could not reuse it and we originally planned to turn it back into a guest room. We weren’t sure about the crib. We put a lot of thought and money into our choice of crib, looking at it as an investment. We planned to have several children and have all of them sleep in it. We even hung on to it through the drop-rail recalls in 2009. It was never recalled, but we have immobilized the drop-rail.

During my pregnancy with Baby Bean, I actually had a minister come to the house and say prayers in several rooms, including Lucy’s. A friend of mine recommended him, because he had done the same at her house. A car crashed into their house one night. Luckily, no one was hurt, but they felt like they needed something to remove the bad vibes before they moved back in after repairs.

The sad loss of Baby Bean gave me extra time to think about this issue. I started to realize that I was looking at it all wrong. We didn’t have a car crash into our house. Belle and Lucy did not suffer violent, unnatural endings in that room. They were both very sick and had natural deaths. Death itself is a natural, inevitable part of life, although it came much too early for both of them.

Dying at home used to be normal. People were born at home, they lived there, they married there, and they died there. Their friends and relatives prepared them for burial and they remained at home until they were taken to the cemetery.

I still sit in Lucy’s room for a few minutes most nights. I talk to her sometimes. Lately, I have started reading a book to her and Scarlett in there each night. In the first months after Lucy’s death, I just felt so sad whenever I sat in there. Of course, there was the obvious reason, but I also knew I felt great sadness at giving up that bedroom. I worked over every single detail in Lucy’s room and endeavored to make it special and meaningful. So many hopes and dreams went into that room. Every part of me rebelled at letting it go.

I can’t remember now if this was before or after I read that Scarlet Deford inherited Alex’s room and bed. I realized that I don’t have to give up Lucy’s room. We don’t have to obliterate it. The room and the things in it can be a gift from Lucy and me to Scarlett. That room was meant for a little girl to grow up in and now it can have its second chance. It’s not creepy or morbid and Scarlett probably won’t think so when she gets older if that is what is normal for our family. Hopefully, she will realize that she gets to share a room with her sister, even though they were cheated out of a life together. I fervently hope this will help foster the connection I so want them to have.
The moment I made this decision, I felt such peace. I talked to Chris about it and he agreed. He did suggest that we make a few changes, so that the room would be Scarlett’s, too. He wanted to be able to tell from pictures when the room belonged to Lucy and when it was Scarlett’s.

So, there will still be ladybugs parading around the top of the walls. There will still be a red dresser, curtains, and glider. (The glider, crib, and changing table are actually from Max’s nursery, too.) The literary silhouettes will remain. We will move most of the memorial pictures of Lucy, but maybe leave one.

I have bought two Scarlett O’Hara dolls, a set of three princess art prints (a pumpkin carriage, a castle, and a princess dress), a pom-pom mobile, and a print of the “And though she be but little, she is fierce!” Shakespeare quote to add for Scarlett. I’m working on adding a Gone with the Wind literary silhouette to the Nancy Drew, Louisa May Alcott, Anne Shirley, and Laura Ingalls Wilder ones that are already there. Max picked out a bumblebee lamp. I’m still working on a new rug. The color palette is more light pink, yellow, white, and gray this time.

My favorite part, just as with Lucy’s nursery, is the letters that will spell out “Scarlett” on the wall. During my pregnancy with Lucy, I purchased beautiful, custom-made letters to spell “Lucy” that perfectly match the ladybug décor. Neither the name nor the letters are reusable, of course. The person who made Lucy’s letters seems to have closed her shop. I came up with the idea months ago of reusing the “L” and the “C” for Scarlett’s letters. Luckily, I have found a lovely woman who took on the task of making letters for the remaining six letters in Scarlett that complement the Lucy letters and actually tie together the disparate color schemes of Lucy’s and Scarlett’s nurseries. They will also sport a ladybug for Lucy, a bumblebee for Scarlett, and a monkey for Max. (His nursery was decorated with monkeys.) I saw her design template yesterday and am so excited. She has an Etsy shop called “Lovey Letters by Leah”. I highly recommend her. She has been so lovely and sympathetic and accomplished something I was starting to consider impossible. I can’t wait to show all of you. You can never know, but I hope Scarlett will treasure these letters and the connection they show between her and her sister and brother.

The other way in which Alex gives me new hope is for the future of children with cardiomyopathy. In the 1950s, children with cystic fibrosis were lucky to live until kindergarten. By the time, Alex died in 1980, she was only 8. Frank Deford says in the afterword to the 1997 edition of Alex that the Cystic Fibrosis Foundation was bringing in $15 million a year at the time the book was published in 1983. In 1997, when he wrote that afterword, the Foundation brought in more than $90 million (Deford 220). The gene that causes the disease has been isolated. People with this disease can now live into their 40s. The last I heard, a cure is a real possibility.
It is so strange that I am now the parent of a little girl who died from a chronic, terminal, little known, and little understood disease. Dilated cardiomyopathy, the form that Lucy had, has a 40-50% five-year survival rate, depending on the severity of the case and the presence of other complicating factors. Lucy only survived six months after her diagnosis. I never knew what this disease was before, but I want to take down the disease that took my daughter. It is one of my life goals now.

Lucy had such an impact during her short life and continues to have an impact since her death. Some of the credit for the new hope for CF patients has to go to Alex and Frank Deford. Alex gave a face to the disease and he wrote the book that spread her story all over the world. He served on the board of the CF Foundation for years during Alex’s life and after her death. When he felt tempted to give up, his wife would remind him how close they were and that they couldn’t “let Alex down now” (Deford 221).

I feel the same way. If Lucy had lived, she probably would have wished, like Alex, for a cure for her disease. These two little girls still deserve to have that wish come true. More importantly, the children and adults living with these diseases deserve to have that wish come true. It seems like hubris on my part, but I believe if I can get Lucy’s story out there, we can make an impact. Maybe not as big as the impact Alex has had, but why not try? Maybe part of my daughter’s legacy can be a cure for pediatric cardiomyopathy. Maybe her death won’t have been in vain.

I want to write a book about Lucy and do for pediatric cardiomyopathy what Alex Deford did for cystic fibrosis. There. I’m saying it publicly. Writing a book is on my bucket list and now curing this disease is, too. Y’all need to hold me accountable and help me make this happen. It might be more of a novella, since I only have 15 months to work with as opposed to eight years. I want to make it happen. I believe Lucy and I can make a big difference together.

When I was a child, Alex inspired me to be brave and appreciate life. Now that I am a 34-year-old mother who has lost a daughter, Alex, Frank, and Lucy inspire me to keep living and to keep fighting this disease. It is so valuable as a parent who has lost a child and wants to make a difference to have the guidance of someone who has been there. Thank you, Alex and Frank. I hope the next thing we get to have in common is finding cures for these diseases.

For more information about cystic fibrosis, please visit the Cystic Fibrosis Foundation : http://www.cff.org/

For more information about pediatric cardiomyopathy, please visit the Children’s Cardiomyopathy Foundation: http://www.childrenscardiomyopathy.org

To check out Alex – the Life of a Child : http://smile.amazon.com/Alex-Life-Child-Frank-Deford/dp/1558535527/ref=sr_1_1?ie=UTF8&qid=1395680701&sr=8-1&keywords=Alex-+the+life+of+a+child

 

Deford, Frank. Alex – The Life of a Child. Nashville, TN: Rutledge Hill Press, 1997.

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