Mother’s Day

Mother’s Day is fast approaching. This is a holiday I have cherished in the past, even though I think most of my actual Mother’s Days have been marred a bit by the pressure that often accompanies a big, sentimental holiday like that. Everyone wants to honor their wife or mother appropriately and worries she will be disappointed. Women often hope for a day of pampering or try not to let their hopes get too high and all of the stress leads to letdown, no matter how great the day is. It’s a self-fulfilling prophecy.

I’m sure some people have great Mother’s Days, but it’s a lot like Valentine’s Day. In fact, my husband and children usually get me lovely cards and presents. I definitely feel loved, but life is no respecter of special occasions. It doesn’t help that my birthday is usually right before or even on the same day as Mother’s Day. (And my wedding anniversary is two days after Valentine’s! We planned that well, didn’t we? 😉 )

Last year’s Mother’s Day was the worst one yet. My daughter Lucy died unexpectedly in her sleep that evening. She had dilated cardiomyopathy, but we had no idea she was that close to death.

Before that, the day had unfolded pretty typically. We spent the morning at home and planned to go to the Texas women’s history exhibit at the Bob Bullock Texas State History Museum. Of course, we got going late, planned to eat lunch at the museum, and found they were closed for lunch by the time we got there and only had snack-type foods. I can’t remember what kind of solution we came up with for lunch.

Everyone was cranky and Lucy threw up while Chris was feeding her and Max and I were in the exhibit. We were both worried about her, but I remember, to my eternal shame, that I was angry. I was angry that my Mother’s Day wasn’t turning out the way I wanted. I was angry that pediatric cardiomyopathy was marring yet another special occasion. The anger hid the fact that I was desperately afraid and sad about what was happening to my daughter. I thought I was having the gut feeling the transplant team said we would have when she was declining and needed to move up on the list. I felt sure that was what we would hear at her cardiologist appointment the following Tuesday.

I stormed out to the car with Max with Chris and Lucy following behind. Thank goodness, I calmed down and came to my senses during the ride home. I got her out of her car seat once we arrived and held her and talked to her lovingly. I checked her diaper and saw how tired she was, so I decided to put her down for a nap and see if she seemed any better after that. I thought she would be better for a rest and some food if we did decide she needed to see a doctor that night.

I will forever be grateful that I carried her upstairs, held her, rocked her, and loved her. I’m so glad I let go of my anger and thought about her. I planned to hold her till she fell asleep, but she squirmed and wriggled until I put her down in her crib. I left the room and never saw her alive again.

Although Mother’s Day falls on a different date every year, this year, and perhaps for the rest of my life, it will be the day my daughter died. There might always be two anniversaries of her death. I don’t know yet. I think we are all aware at every holiday that there are people missing those they love. So, before the Facebook chatter and the Mother’s Day commercials get underway, I would like to issue a gentle reminder that there are people celebrating without their mothers and grandmothers this year. There are people celebrating without one or more of their children. For some, it is their first year without this person. For me, it will also be the first anniversary of my daughter’s death.

I don’t want to ruin your day. I don’t want you to feel guilty for celebrating. Mothers deserve to be celebrated. Perhaps our perspective needs to be changed, though. If you want a certain gift, by all means, tell your husband and kids. If you want the day to yourself and to not be around your husband and kids, let them know. Believe me, I understand.

But this day isn’t just about brunches and spa packages. Your family loves you. They appreciate you. They want to make that day special for you. If normal or not-so-normal circumstances intrude, please give each other some grace. Please just be glad if your mother and all of your children are still here to celebrate with you.

If you know someone who is trying to just be glad their mother or their child was here instead of constantly wishing to have them back, please remember and reach out. It doesn’t matter if you don’t know what to say. It just matters that you try. You can never go wrong with “Thinking about you today” or sharing a memory about the person who was lost. You don’t have to come up with some profound statement that makes everything better, because it doesn’t exist. We know that and we just appreciate that you tried. I know I will be thinking about my Lucy, about my friend Nicole whose mother died last weekend, and about my friends Jenna, Jennifer, and Kate, who all lost children since last Mother’s Day. I’m sure there are others that I am not recalling at this particular moment, but I am going to try to remember and reach out to everyone I can think of.

Motherhood encompasses a wide spectrum of emotions and experiences and pain and loss is a part of it for many. This Mother’s Day, let’s celebrate the entire spectrum of mothering experiences and remember that others pain does not preclude their joy or anyone elses. One of the many things I have learned this past year is that sadness and joy coexist and contribute greatly to the fullness of human experience and growth. I would do anything to have my daughter back, but I will forever be grateful to her for the lessons her life and death have taught me. Even in death, she has given to me endlessly. Just last night, she gave me the courage to try a solo in Chorus practice that I never would have imagined I would try even a month ago. I vowed to her that I would live for both of us and I am not going to let fear stop me from going after my dreams.

So, here’s to all mothers and children. May we all be celebrated, remembered, appreciated, and supported. May we share in each other’s experiences without guilt or fear or resentment or, at least, without letting those feelings get in the way too much. May we ask for what we want and appreciate what we have.

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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.

In Memoriam: Heart Heroes

Eleanor Lily Ayers (8/2/11-4/25/12, DCM)

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Brodie Rose Bomar (2/16/13-1/10/14, DCM)

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Lucy Blythe Farmer (2/11/12-5/12/13, DCM)

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Bennett Ian Grimes (11/25/10-11/26/10, LVNC)

Bennett

Judah Kirkham (1/23/09-2/28/10, DCM)

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Evan Michael Martinez (6/20/13-10/7/13, HCM secondary to Noonan Syndrome)

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Joseph Scott Middlemiss (5/31/07-9/23/13, DCM that became HCM)

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Ben’s Story

Today’s story is my final story for Heart Month and one I have been excited to share. You might have already heard of this young man. His name is Ben Breedlove and I am excited to share his story, not only because he had a different form of Lucy’s disease, but he also grew up in Austin. (Lucy had dilated cardiomyopathy, while Ben had hypertrophic cardiomyopathy. Those are the two most common forms.)

I first read about Ben in People magazine while I was pregnant with Lucy. This was long before she became sick. I didn’t know what cardiomyopathy was. My big takeaway from the story was that this young man was wonderfully brave and that I was proud he was from Austin. After Lucy became sick and I realized he had the same disease, I was surprised and also hopeful that Ben’s story would cause more people to take notice of pediatric cardiomyopathy and help us find a cure.

Ben grew up in Austin and went to Westlake High School. He was a local celebrity, thanks to his YouTube videos, which doled out relationship advice to his peers. He died December 25, 2011, at the age of 18 and later gained both national and international fame for two videos he posted a week prior to his death: “This is my story (Part 1)” and “This is my story (Part 2)”.

Watching Ben’s videos, I teared up. I hope that Lucy would have had that courage and optimism if she had gotten the chance to grow older with this disease. Whether you believe in Heaven or not, I think everyone can agree that Ben transcended terrible circumstances to live a happy, fulfilled life. I am proud to share his story and thankful to his mother Deanne for permission to do so.

Ben told his story best through his videos, so I am going to post links here. Before I do, I want to thank all of you who have read and shared the Heart stories from this month. It means a great deal to those of us who have chronically ill children and who have lost children to this disease to be able to share, as my friend Tove put it on her blog, “the heartbreak and miracles we witness every day as heart families”.

The Ben Breedlove Memorial Fund: http://www.africanewlife.org/the-ben-breedlove-memorial-fund/

To learn more about pediatric cardiomyopathy, please visit: www.childrenscardiomyopathy.org

For information about Ben’s sister Ally’s best-selling memoir about Ben “When Will the Heaven Begin?”: http://smile.amazon.com/When-Will-Heaven-Begin-Breedloves/dp/0451468155/ref=smi_www_rcol_go_smi?_encoding=UTF8&*Version*=1&*entries*=0

 

This is my story (Part 1)

 

This is my story (Part 2)

Ryan’s Story

I was put in touch with Ryan’s mom Tracie through Dr. Karen Wright, cardiologist to both Lucy and Ryan. I haven’t yet had the pleasure of meeting Tracie in person, but you can tell from her writing that she is a sweet, kind person. The Montanios were also a featured family in the American Heart Association’s Heart Walk ads in Austin’s “Community Impact” newspaper. Below is Ryan’s story in Tracy’s own words. She also has a blog: http://themontaniofamily.wordpress.com/. On there she has chronicled her family’s journey through losing Ryan and subsequently welcoming his baby sister Harper. Happily, Harper is perfectly healthy. Thank you for sharing Ryan with us, Tracie.

 

Mark and I were blessed with our son Ryan on October 1, 2011.  When Ryan was born, he weighed in at 3 lbs., 15 oz., and was 15 inches long.  He was transported to Dell Children’s Hospital that night, because his blood gas levels were not where they needed to be.  We thought we would be at Dell for a few weeks while Ryan grew and got stronger, thinking it was just due to prematurity.

On October 13th, Ryan was diagnosed with TAPVR (Total Anomalous Pulmonary Venus Return), a congenital heart defect that would require open-heart surgery.  We thought we would be headed to Dallas on a plane to have surgery ASAP.  Then it was decided that Ryan was doing well enough to continue growing, so the veins that needed to be operated on would be larger.  They wanted to wait till he was 7 pounds (He was 4 lbs., 9 oz. at the time).  As a parent, all we wanted was to have our son “fixed,” so we were not so excited about the waiting…it seemed like it would be an eternity. 

We did lots of back and forth hospital and doctor appointments between then and February 2012.  Thank goodness we had a wonderful and honest relationship with our cardiologist in Austin, who provided so much support along the way.  We finally landed in Houston with a wonderful group of doctors to help us through the next 7 months!

Feb, 24th is when Ryan had his first surgery to repair his pulmonary veins.  People we had talked to said “he will be a different” kid…we didn’t really know what that meant, until after the surgery!  Before surgery, we fought battles of needing Ryan to consume enough calories and requiring a feeding tube.  After surgery, he WANTED the bottle! And, most importantly, he was white, not blue! We fell in love all over again!  The unfortunate part was that we thought we were “done, all fixed” and we could start “living” life with a healthy baby. 

About a month after we returned home, that “mommy sense” kicked in and we were sent back to Houston…Ryan was not doing well and we needed to figure out why.  We were welcomed by familiar faces and open arms (once we got through the ER).  We were scheduled for a heart cath to gather more data and see what our next steps would be.  During our stay here, they felt a trach would help Ryan.  After we were done freaking out that we would have to come home with a trach and know how to care for a 7 month old, we pulled our bootstraps up and started learning!  We ended our longest hospital stay of 6 weeks that May and returned home, by ambulance, I might add!

After battling home health care, something I would wish upon no one, we were trying to find a “routine.”  We attended doctor appointments (lasting up to 3 hours at a time), while squeezing work in here and there as much as we could.  And, in true Ryan fashion (he did not stick to any schedule), we were headed back to Houston earlier than scheduled for our second open-heart surgery.  August 17th was the magical day!  I remember being in The Ronald McDonald family room one day overhearing a conversation from another heart mom, “You know something is wrong with us when we are excited about heart surgery.”  That is exactly where we were; let’s do this…again, hoping for a “fix.”  We had started to realize this was going to be a long road with lots of trips to doctors and multiple heart catheters, but we were ready!

A post from our blog in August…never did we think this would be us in a month…

“We know we have had somewhat of a rough road with Ryan’s ups and downs…but, we are so grateful to have him with us. A baby was lost today in the CVICU today, send extra prayers to Houston for this family as they mourn the loss of their little one.”

After more learning at the hospital, now Ryan would be coming home on a ventilator…we never thought we would know so much medical stuff!

We were only home a few short weeks before making our final trip to Dell Children’s Hospital.   We headed to the hospital because Ryan’s heart was racing and we could not do anything to bring it down.  I do wonder what the people thought when I started handing out timelines and medication schedules as we headed to the hospital.  This night was the worst night anyone could imagine…it was like watching a TV show and the rerun is constantly on. September 23rd will have a new meaning for the rest of our lives, one week shy of Ryan’s 1st birthday.   

Of course, we would say that was the most challenging year of our lives, but there is not one day we would trade.  We had the ability to meet some amazing people along the way, as well as learn some pretty amazing life lessons.  Ryan seemed to touch people in a special way and for that we will always be thankful.

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