Kittymomma's Adventures

The one year anniversary of Lucy’s death is coming up on May 12. (Kathy Glow, who lost her son Joey to cancer, calls it the “crapiversary”. I like that, but I’ll probably stick with “anniversary”.) Although we still have 5 days, I feel inspired to write the one year post now.

When I think back on this week a year ago, I feel panic for myself. It’s almost like I’m reliving the events with the knowledge of what’s coming. I don’t remember every moment of that week, but I do remember every day.

The weekend of May 4 and 5 was our family trip to the Hyatt Lost Pines.

On Monday, May 6, Lucy’s physical therapy was unexpectedly canceled, so I took the kids to Terra Toys. They played with a dollhouse and we went to Starbucks afterwards. I happily planned to buy them both a dollhouse for Max’s birthday in July. I auditioned for the SoCo Women’s Chorus at Janey’s house that evening.

On Tuesday, May 7, I took Max to school and hustled to get to Lucy’s weekly appointment at the cardiologist. It took the entire morning. I rushed through Whataburger to grab lunch and get to Max’s school to pick him up on time. When I took Lucy out of her carseat at the school, I discovered she had dirtied her diaper to the extent that I couldn’t take her inside that way. As I was frantically changing her in the back of the car, the school called asking where I was. I went to book club that evening at Kerbey Lane.

On Wednesday, May 8, I think we enjoyed our only free day of the week.

On Thursday, May 9, I turned 34-years-old. The playscape we ordered for the kids arrived and was installed in the backyard. I took my final photos of Lucy during snack time that day. We went to Barnes and Noble to meet my friend Dawn and Lucy had another poopsplosion in the parking lot. We ate at Kerbey Lane that evening, as is our routine on the days the housekeepers come.

The last photos I took of Lucy.

With the kids on my birthday last year.

On Friday, May 10, I prepared for my parents’ visit that weekend. Chris planned a small birthday party for me at Chez Zee that evening. There was torrential rain that kept the other guests from coming, but Chris and I persevered and had a lovely time.

On Saturday, May 11, we attended my niece Julia’s first birthday party. Lucy seemed tired and Chris left early with her, with me and Max following close behind. She vomited hugely in the car. We talked to the transplant team that night. They said to keep an eye on her and call if she developed any other symptoms or vomited again. She didn’t.

On Sunday, May 12, it was Mother’s Day. I wanted to go to the history of Texas women exhibit at the Bob Bullock Texas State History Museum. Chris fed Lucy while Max and I walked through the exhibit. She vomited again and we had to leave. We talked to the transplant team and cardiologist and moved her appointment with her pediatrician up to the next morning. She already had appointments scheduled with both the transplant team and her cardiologist that week.

I took her home and put her down for a nap. When I went to get her up, she didn’t respond to my voice. She was cold and not breathing. I rushed her downstairs, we did CPR until the paramedics came, and they worked on her for an hour before they pronounced her dead at 6:15.

I never in a million years pictured my daughter dying on Mother’s Day. I never envisioned this past year spent mourning Lucy instead of working to help her live. That last week, even that last day, were totally normal for us until they weren’t.

That’s kind of how life is for me now. It’s totally normal until the grief sneaks up and hits me in the face and then it’s not for a little while.

This week has actually been okay so far. Last weekend was concert weekend for the Chorus. My parents visited for that and for my niece Julia’s birthday party. We attended a lovely remembrance ceremony at Dell Children’s where Lucy’s picture was displayed and her name read. Last night, the Chorus sang the National Anthem at the Round Rock Express game. We stayed afterward, so Max could see his first baseball game. He had a blast.

I also had a doctor appointment Monday morning and Scarlett looks perfect.

Baby Scarlett skeleton face! Eek! It’s a perfect skeleton face, though!

It’s been a week of fun and hope so far, which is surprising to me. This past year has been one of growth, pain, joy, and constantly renewing resolve to move forward.

Lucy has given me so much. In the past year, I have written on my blog every week, except for the two months that I was working intensely on the Ladybug Jam and the Heart Walk. I am even a published author now. I sing everyday and I even auditioned for a solo.

I promised her that I would live for both of us. I have kept my promise to write and I hope I have kept that one, too. It is more of a work in progress. I am better at being in the moment. I think I am kinder to myself and others. I am more honest and I see through the bullshit. I know what’s important. I’m trying to figure out how to merge that with being kinder to myself and others. It hasn’t always worked so well and I know I have sometimes rubbed people the wrong way this past year. But others rub me the wrong way sometimes, too, and guess what? I have finally realized that I, too, am human. I get to screw up and make mistakes just like everyone else. It’s okay to be honest and get angry, as long as you talk it through and work it out. Real relationships can withstand that.

I am a better mother. I hope I am a better wife. My husband just says I’ve always been great, because he is awesome. J

I have done things in her name that I don’t think I ever would have been brave enough to do otherwise. In spite of any friction I have felt with people in my life this past year and in spite of my worries about people liking me, I recently realized that I like myself. I truly do. I am proud of who I am in a way that I was not a year ago. I do want others to like me and be proud of me, too, but truly, for the first time ever, I like and am proud of myself.

I am so grateful to Lucy for this growth. I wonder if it would have come about if she hadn’t died. At times, I think of the happiness I feel with the changes I have made in my life and I feel so guilty. It gives me such great satisfaction that writing is a regular part of my life, that we have made a small difference in pediatric cardiomyopathy awareness and fundraising, that I am singing and performing again. But I am not sure if I would be doing those things if she were still alive. At least, I wouldn’t be to the extent that I am doing them now.

I miss my crazy life as the mother of two small kids, born two and a half years apart. It brought me an entirely different kind of fulfillment and joy. I know there is nothing wrong with keeping my promise to Lucy to fulfill my potential and live to the fullest. But it feels wrong to enjoy something that probably wouldn’t have happened so soon if she hadn’t died. She taught me big lessons and I was left with time that needed to be filled. I just wish it could have happened without her dying. I am so grateful for this growth that I feared would never happen, but I would take her back in a heartbeat if I could.

How could any good come from a young child dying before she got to live? Somehow, good almost always comes from bad. I wish Lucy could have been a normal kid, but I am so proud of the impact she has made with her life and her death.

So, that is one year from that one week. I am so grateful to my baby girl for giving me the bravery to live the life I am supposed to live. She is the one who finally gave me the key to liking myself. One year is gratitude and guilt, appreciation for what we have gained and wishing it could all be different, so we could have back what we lost.

We’ve all heard of Ashton Kutcher, right? He played Kelso on “That ‘70s Show” and he’s currently starring on “Two and a Half Men”. He’s Demi Moore’s ex-husband, Mila Kunis’s fiancé, a newly expectant father, and he also played Steve Jobs in a biopic.

Since his years on “That ‘70s Show”, he has proven he’s much smarter than Michael Kelso. According to Wikipedia, he was worth upwards of $140 million as of March 2013, thanks to savvy investments in companies such as Skype and Foursquare and endorsements for Nikon.

What some of you might not know is that his twin brother Michael suffered from pediatric cardiomyopathy. Michael underwent a successful heart transplant in his early teens.

Kutcher has gone on record about the traumatic effect of cardiomyopathy on his family saying that, “He didn’t want to come home and find more bad news about his brother” (Wikipedia). He even threatened suicide at one point, so that his brother could use his heart. Luckily, his dad talked him out of it and his brother received his new heart shortly after.

Why do I say he could be our Danny Thomas? I’m not sure how familiar a name Danny Thomas is anymore, so let me give some background.

Danny Thomas was the star of the popular sitcom “Make Room for Daddy”, later renamed “The Danny Thomas Show”. He was also a very successful producer of such shows as “The Dick Van Dyke Show”, “The Andy Griffith Show”, and “The Mod Squad” (Wikipedia).

Many might not realize that he was also the founder of St. Jude Children’s Research Hospital in Memphis,Tennessee. St. Jude’s is most famous for treating children with cancer and never turning anyone away due to inability to pay. According to Wikipedia, they are dedicated to helping children with “catastrophic diseases”, but they are most associated with pediatric cancer treatment and research. Thomas’s daughter Marlo Thomas, a famous actress in her own right, is now St. Jude’s National Outreach Director. You might have seen her on “That Girl”, on “Friends” as Rachel’s mom, or in the St. Jude’s commercials. J

St. Jude’s was a game-changer for pediatric cancer. According to Wikipedia, since St. Jude’s was founded in 1962, the survival rate for acute lymphoblastic leukemia, “the most common type of childhood cancer”, increased from 4% to 94% today. The overall survival rate for childhood cancer has risen from 20% to 80% in that same amount of time.

Children with cardiomyopathy have not seen any change in outcome in 30 years. The five-year survival rate for children with dilated cardiomyopathy, which Lucy had, is 40-50%.

We need a St. Jude’s and a Danny Thomas for kids with cardiomyopathy and ALL other congenital heart defects and pediatric heart diseases. It is long, LONG overdue.

I think Ashton Kutcher could be our Danny Thomas. He has a personal connection to the disease, he is very wealthy, he has a substantial presence on social media (He was the first to have one million Twitter followers.), and he has shown an interest in social activism, such as fighting malaria and protesting human trafficking.

It is possible that he has donated money or been active in the fight against pediatric cardiomyopathy privately. It is also possible that he stays away because he believes it to be a hopeless cause or because he doesn’t want to relive the painful memories of his brother’s illness.

I get it. I experienced days where I just couldn’t take hearing more bad news about Lucy. I cried after almost every appointment with the cardiologist. Sometimes I worry that doctors think that pediatric cardiomyopathy is hopeless and they need to focus on the kids they can save.

I refuse to believe that pediatric cardiomyopathy is hopeless. Only 10 or 15 years ago, I read a cover story in “Time” that outlined in dismal detail why HIV was incurable. Thirty years ago, it was a death sentence.

Now three people that I know of have been cured – no trace of HIV can be found in their bodies.

Cystic fibrosis was considered hopeless as recently as the 1970s and 1980s. Now people with the disease can live into their 40s and as far as I know, there is still every hope of finding a cure.

I’ve already outlined how much brighter the outlook is for children with pediatric cancer.

Pediatric cardiomyopathy is NOT hopeless. If we can cure HIV, we can cure cardiomyopathy. If we can eradicate smallpox, we can cure cardiomyopathy.

Much of that change took place because of celebrities taking up the cause of various diseases and using their fame and good fortune to fund research. Elizabeth Taylor made a huge difference in the fight against AIDS. Frank Deford wrote a best-selling book about his daughter Alex that became a TV movie. It exponentially raised awareness for cystic fibrosis. Ashton Kutcher has influence and resources that most families of pediatric cardiomyopathy patients can only dream of. He has the power to help other families who are enduring what his family did and even to stop it from happening. If he spoke up, people would listen. He has the money to make the same difference that Danny Thomas did.

Danny Thomas started St. Jude’s, because he prayed to St. Jude Thaddeus for a better means to support his family and his prayers were answered. He paid his success forward and lives continue to be saved thanks to him, even though he is long gone.

The fact is, we pediatric cardiomyopathy patients and families don’t care who we get. Ashton would be great, but we just want someone, anyone with the influence and means to make a difference to do it. They don’t have to have a personal connection. I don’t want anyone to feel pressured to do something that would be painful for them.

However, I think that, if Ashton Kutcher stepped in and drew attention and money to this cause he could make all the difference. He could be our Danny Thomas. And I think it would go a long way towards healing his pain, my pain, and the pain of so many who have lost children to cardiomyopathy. Not to mention that it would save countless lives.

I am still a devoted fan of “Grey’s Anatomy” and a recent storyline has only served to increase that devotion. The last four episodes featured a major storyline about three siblings with dilated cardiomyopathy. That is not only a form of pediatric cardiomyopathy, but it is the EXACT form Lucy battled.

I FREAKED out.

The feeling of gratitude many parents feel when their child’s obscure, fatal disease is featured on a prominent TV show is overwhelming. You feel like no one knows or understands what your child and your whole family are going through and then a popular TV show dramatizes it for millions of viewers. You feel understood. You feel hope that the right person or people will get the message and we will finally get that effective treatment or cure.

“Grey’s” pretty much nailed their portrayal of a family living with DCM. I was prepared to find faults with it, but, except for their focus on an environmental cause for the three siblings’ cases (That’s possible, but three siblings all with DCM screams genetic cause to me.) and their dropping the search for a cause like a hot potato after the first episode, they did well. They captured the feeling of living in the hospital for weeks with your children, as well as the feeling of hopelessness parents and even doctors can feel when faced with pediatric cardiomyopathy.

It finally occurred to me last week that it would really help if “Grey’s” featured the URL for Children’s Cardiomyopathy Foundation at the end of one of the episodes or even had some of the actors give a short spiel about the sobering statistics of the disease, as they have done with other diseases before. I think the DCM arc might be over and filming is done for the season, but they still might be able to add something, either now or next season. So, here is a way you can help families living with pediatric cardiomyopathy today. It’s free and only takes minutes.

If you have a Twitter account, please post the following tweet:

@shondarhimes @ccfheartkids Thanx for featuring DCM on GA! Could you pls put this URL on-air http://www.childrenscardiomyopathy.org . It would mean so much!

If you are only on Facebook, you can post on the Facebook pages for Shonda Rhimes (creator of “Grey’s Anatomy” and “Scandal”) and for “Grey’s Anatomy” itself.

While I’m at it, this part isn’t free, but it’s still easy. J If you can, please donate to CCF’s Spring Appeal. They recently discovered that only 65 cents of every $100 of federal funding for heart problems goes to pediatric cardiomyopathy. They want to fund another study in 2014 and they need our help. You can donate by going to www.childrenscardiomyopathy.org. Simply select “Research” in the drop down box when you make your donation. We will be making a donation for the first anniversary of Lucy’s death this May. Even if you can’t donate, please spread the word. We aren’t going to find the cure with 65 cents for every $100.

Finally, keep an eye out, because Team Lucy, last year’s number one community team for the Austin Heart Walk, will be back in a matter of weeks!

Thank you all so much for your support.

The little girl looked intently into my eyes, two lines of concern creasing the space between her eyes. There was an uncharacteristically serious look on her face for a four-year-old. Her next words sent me reeling.

“I know Max’s sister died.”

“Taken aback” seems a pitiful way to describe the feelings competing for attention in my mind and heart at that moment. I was caught flat-footed. A comment of that nature was completely unexpected during Max’s school pick-up.

Not that this was a foreign experience. Max’s age group is notoriously blunt and curious. His young friends ask questions like this not infrequently, not realizing it is rude or potentially hurtful. I know this and always answer their questions calmly and with my best age-appropriate honesty. Previously, though, the questions came from his friends in our play group, who are also my friends’ children. I expected them from that group, because they knew Lucy her entire life. I did not expect them from children who knew us only a few months before Lucy died. No one at Max’s school has mentioned her all year. I thought many of them must not know or they didn’t realize we were the family that lost a child.

This particular little girl was in Max’s class when Lucy died. Another former classmate recently yelled out during pickup that she remembered Max. So, that was what I was expecting during that sunny school pick-up from this little girl.

This thought flitted through my head, “Um, yeah, I do, too. I’m their mother. Duh.”

I floundered, stuttered, and finally said, “Well, that’s good!” I immediately felt like an idiot. I couldn’t have said, “Thank you for telling me” or “Thank you for remembering her”? The little girl looked confused. I was, too. I felt a bit angry that her parents hadn’t told her a comment like that was inappropriate. I wondered if they did tell her and she just didn’t listen or forgot. I worried that the little girl thought I was angry with her. I wondered why the heck she said something like that and where the hell her caregiver was. Maybe she was trying to show sympathy or she was curious. Perhaps she felt grown-up in bringing up such a topic. More likely, she was just blurting something she knew randomly in order to show she knows things, as four-year-olds do.

“When did it happen?”

The next question came at me before I caught my breath from the first one. I said “Last May” and tried to smile as I busied myself helping Max with his backpack. Max saved me from more questions.

“But we’re making a new sister right now!”

I jumped on the new topic gratefully, “Yes! There will be a new sister this summer, won’t there? And then you will be such a lucky boy. You will have two sisters!”

Max jumped up and down, yelling, “It will be two sister time! Two sister time!”

The little girl gave us another confused look, as if our response was disappointing to her. Then, she moved off and we left.

Perhaps she does not understand how Max will still have two sisters. He seems to, though, and that is what matters.

A few days later, the same little girl called after us as we left school, “Tell your mom I hope she has a good baby soon!” 🙂

Dear Scarlett,

I really thought you would never be born. Sometimes I still am not sure. I am careful to say we will “hopefully” have a new baby this summer. It seems presumptuous to assume you will be born safe and healthy. I struggle to speak of you with certainty and, when I do, I worry that I am tempting fate. I knock on wood after sometimes.

I say a prayer every night to St. Gerard Majella, the patron saint of expectant mothers. The last line asks that you “may see the light of day and receive the lustral waters of baptism through Jesus Christ our Lord”. Guess I have to make sure and get you baptized now. 😉

I still remember the first time I said that prayer. I looked up the patron saint of expectant mothers and began saying it daily within days of seeing the positive pregnancy test.

Ever since that first day in Max’s hospital room at Dell Children’s, I have forced myself to envision this pregnancy going successfully. I have played every milestone over and over in my head. That was what I had to do to dispel the dull certainty I felt that day after the first rush of joy. I felt a dull, defeated feeling that we would not get to meet you. It just seemed too good to be true.

It did not help that I was experiencing some bleeding, just as I did at the beginning with Baby Bean. That never happened with Lucy or Max. It was not as bad as it was with Baby Bean, but it wasn’t the way it was supposed to be. The on-call nurse at the OB called in a progesterone prescription and I sat tight, waited, and prayed. The bleeding had stopped by Monday or Tuesday.

The following Thursday, I thought all hope was lost. My period was due that day and I began to bleed again. I was so frightened and angrily resigned to getting the shaft again. I wondered how we would handle a third loss in one year. I tried to comfort myself with the fact that it was so early and we could try again the next month probably. It didn’t really work.

Daddy stayed home from work that morning and somehow, miraculously, the bleeding stopped. I was so frightened you were trying to leave my body, but you didn’t. You didn’t leave.

Somehow, we made it through that first trimester. There was no more bleeding, but every cramp sent me running to the doctor. (Apparently, the more times you are pregnant, the more aches and pains you get. Since this was my fourth, the first couple of months were pretty painful at times.) We did at least three or four ultrasounds just in the first trimester. I experienced severe anxiety attacks almost every time. My heart pounded and I clutched my little Jizo figurine in my hand for comfort, bracing myself for the worst. You were still there every time, growing steadily bigger. Every time, I reminded myself that we had cleared another hurdle.

You didn’t leave my body.

You were a real baby with a heartbeat, not a blighted ovum.

We made it through the first trimester.

We made it through the MaterniT21 test and the Level II ultrasound and fetal Echo. You are a girl with every appearance of perfect health so far.

We still have three months at least to traverse before you are in my arms. We still have the birth to conquer, then the first year without a cardiomyopathy diagnosis. I am frightened for myself after what happened after Lucy’s birth, even though my caregivers seem confident all will be fine. I am frightened for you. But I am allowing myself hope and happiness. I am still picturing it all turning out fine.

You will turn head down and I will go into labor on my own. (Hopefully before 41.5 weeks this time.)

Even if the above does not happen, you will be born alive, healthy, and safe, and I will be as well.

We will have that moment where we will look at each other and it will seem like the Earth and time itself stand still. That one moment at the very beginning of an entire life where everything seems perfect. That one moment where you get to rest and rejoice from hard work well done before the next phase begins. That moment is so sublime. I can’t wait to experience it with you.

Lucy was 15 months old when she died. You will be born almost exactly 15 months after her death, most likely.

You will be born almost exactly a year after the D&C that ended my pregnancy with Baby Bean.

You will be born 2.5 years after Lucy, exactly the same age gap that existed between her and Max.

Max and I have discussed broken hearts lately, because one of my Chorus songs talks about breaking hearts and Max does not understand how hearts can break. He was interpreting the lyrics very literally. I explained to him that it just means you are sad, like when a relationship ends or someone dies. He said:

“My heart will be all healed when Scarlett comes! All of our hearts will be healed when she comes!”

I don’t know about that, but I do know you will bring much joy and healing into our lives. We will love you with everything we have in return.

We just can’t wait for you.

But we will, because you are worth waiting for.

Love, Mama

I’ve only mentioned this glancingly on the blog before, but I am a proud member of the SoCo Women’s Chorus here in Austin. (For non-Austinites, SoCo is short for South Congress, a famous street here in Austin that is home to fabulous restaurants and shops.) The Chorus began practices in the fall of 2012, so this is our second season.

SoCo Women’s Chorus was the brainchild of Janey Hall, who is the artistic director and one of the most inspiring women you will ever meet. She dreamed of starting an all-female chorus that would also be a service organization for the greater Austin community. Now her dream is a reality. The Chorus empowers its members by helping us find and share our musical voices. It also empowers women in the Austin community through its support of organizations like Safe Place, which provides shelter and other services for victims of abuse. The Chorus’s mission statement is “to give Austin-area women the experience of musical artistry and excellence through choral singing and performing in a group which reflects the area’s diversity and is dedicated to community service”.

I auditioned for the Chorus last spring, less than a week before Lucy died. I still cannot quite believe the timing that brought this group into my life. Even though only Janey and my friend Mary actually knew me at that point and I hadn’t even started singing with the Chorus yet, they said yes when I asked if they would perform my daughter’s favorite song “Let Me Call You Sweetheart” at her funeral. Attending a child’s funeral is never easy for anyone, but a group of these wonderful women learned that song and did that for me, even though most of them had not even met me yet. It was an incredible gift and I will forever be grateful. Becoming a part of this group of women and singing again helped me to heal during one of the most difficult times in my life.

We have a concert right before Christmas, as well as one in May. The theme for the May concert this year is “Americana” and we will be performing a diverse collection of songs that are representative of the United States’ rich musical heritage. From the National Anthem to Aretha, it’s all there. We are also honored to host the Chamber Chorus of the renowned Turtle Creek Chorale from Dallas. They graciously invited a group of us to perform with them last November in Dallas for the commemoration of the 50th anniversary of the assassination of President Kennedy. We are thrilled that they have accepted our invitation to perform with us this May.

In order to give back to this group that has already given me so much, I decided to devote today’s blog post to us and our upcoming concert. Our Chorus is growing and striving to become the best we can be. To that end, we have a new, bigger venue, the King-Seabrook Chapel at Huston-Tillotson University. This venue is bigger and more expensive, so we really need to fill those seats as soon as we can. Any way you can help is vastly appreciated and we will give you a great show in return. (We are a 501c3 organization, so simply making a donation is tax-deductible.)

So, for only $20, (Price goes up to $25 after April 25. There is a link below to purchase. Tickets can also be purchased at our Tuesday practice.) you get two choruses performing an amazing array of music. We will each perform a separate set and then one together consisting of four songs. (Of the set we perform together, you might recognize “Buffalo Gals” from the film “It’s A Wonderful Life”, but this ain’t Jimmy Stewart and Donna Reed’s version!) Even if you aren’t in the Austin area, you can spread the word via Facebook and Twitter and/or sponsor a song in our program. For $150, you or your business can sponsor a song and have yours or your company’s contribution honored in the program. You can also honor a loved one. (There is a link below to sponsor a song. The deadline is April 17.)

I know that, to some of you, a choral concert doesn’t sound fun if you’re not already a fan of that type of music. But, I promise you, this one will be. Our director Janey is as funny as they come and her passion for the music and empowering women to share their musical gifts is inspiring. The Chorus she founded is a powerful addition to Austin’s celebrated musical scene. So, come out and join us on May 3 at 7:30 pm and/or May 4 at 3:00 pm to celebrate the music of the United States of America and the music that lives inside all of us.

Link to the SoCo Women’s Chorus blog: http://socowomenschorus.wordpress.com/
Link to buy tickets for AMERICANA: http://socowomenschorus.brownpapertickets.com/
Link to sponsor a song: http://www.socowomenschorus.com/

SoCo Women’s Chorus on KXAN, Dec. 2012:

Easter will be the last of our “first” major holidays without Lucy. It is also the only major holiday she had a chance to experience twice.
I don’t know if this will make it more painful. I doubt we will be attending any public Easter egg hunts. Halloween showed me that it is just too painful to be around hordes of small children during these firsts. We couldn’t avoid trick-or-treating, but we can hunt for eggs in our own backyard and Max will be just as happy. We did that last year, because Lucy had a fever at Easter and we had to be careful about exposing her to infection in big crowds.

After Easter, there will be one big milestone left – the one year anniversary of her death. That one year anniversary encompasses my birthday and Mother’s Day. I am unsure what we will do about those occasions or about the one year anniversary. I really don’t want to hear anything about my birthday or Mother’s Day this year. I am going to sedulously avoid Facebook right around Mother’s Day, because I just don’t want to hear about it. If people want to wish me “Happy Birthday”, I truly appreciate it, but I’m not really sure how much I want to celebrate. I am feeling more open to it than I was right after Lucy died, but I will just have to see how I feel as the day approaches.

Although I am sure there will be benefits to moving forward, I don’t want it to be one year, or two, or ten. I don’t want to get further away from her. I don’t want her to be gone longer than she lived. (Thanks goodness, Scarlett will be born right around the time we hit 15 months since Lucy’s death.)

I’m an adult. I understand that death is permanent. I lost plenty of loved ones before Lucy. I found her that day, planned her funeral, and wrote the eulogy, obituary, and epitaph. (Chris assisted some with all three.) I was at her funeral. I’ve been to her grave. I live without her every day.

Yet, the longer she is gone, the more permanent it will be. She’s really gone. She’s really never coming back. Somehow I feel like part of me does not realize that. I don’t know if other parents who have lost a child feel that way or if it’s some kind of denial. I don’t remember feeling that way when my grandparents, uncles, and cousins died.

I don’t want to get to the point where all but our closest friends and family have forgotten her. That just seems like the final injustice to my baby girl. She went through so much and didn’t even get the chance to live. She was cheated of so much that, dammit, she deserves to be remembered. God, I don’t want her to be forgotten.

For instance, we have been to see Max’s ENT several times already this year for a recurring ear infection. Lucy went to that office with us a couple of times. She was at the hospital when Max received his ear tubes. I think she even had her own hearing checked there. The last time she was ever there was right before her diagnosis. She died before Max went back for his next checkup.

No one in that office has asked about or mentioned her. I don’t think they remember her at all. Maybe they are afraid to ask, but most people do and then are shocked to find out she died. A poor server at Kerbey Lane fell into that trap once.

The fact is, I’m certain they’ve forgotten that Max even had a little sister. That’s understandable. They have a big, busy practice. But it hurts every time we go there and I feel that they don’t remember her.

 When I talk about Lucy being forgotten, I don’t mean the curated bits and pieces you get to know about her life through photos, videos, and my blog. I mean the real Lucy. I want the real Lucy to be remembered by those who actually knew her in life. I don’t want that to ever be lost. Those 15 months, the real Lucy, seem like such a precious, ephemeral entity. They are getting further away. I hope that everyone who was a part of those precious 15 months can hold them in their heart for me and never let them go. You all hold a part of the dearest person I have ever lost.

I experienced one brief, shining moment with the real Lucy about a month ago. I was in the master bathroom getting ready and I thought about all those mornings she spent with me up there, first in the bouncy seat, later sitting or lying on the floor playing with toys. For one brief moment there, I could really feel what it was like again. I could feel HER, her essence. It is so strange to say, but it is hard for me to remember what daily life was like with her here sometimes. However, in this moment, I wasn’t actually remembering any specific incident or listing traits of hers. She was just there.

The moment passed too soon. I haven’t had another since. Sometimes I am afraid my memories are being corrupted by photos and videos, even though I wouldn’t trade them for anything. Sometimes I reach for her in my mind and all I can find is frozen images from the photos I have looked at countless times. Some of the photos of Lucy have become “iconic” to me, like the ones we used for the Heart Walk publicity. I love it when I find normal, everyday photos I haven’t seen in awhile. When I stumble upon a new photo, it’s like she breaks free of the frozen image and lives again. (Have you ever noticed how a person’s photos look different after they’ve died? Even Lucy’s name on a page looks different to me now. Her name just looks, well, still to me now.) I know I will run out of photos at some point, but it will take awhile, thanks to IPhones.

Sometimes I look at her photos and feel nothing. My grief counselor says that I might be doing some numbing, but I think I want too much from those photos. I want everything from them, because they are all I have left of her. It’s similar to what C.S. Lewis said in “A Grief Observed” about his dead wife. I don’t have the exact quote at hand, but he said the very force of his initial grief kept him from the very thing he wanted – the real her. Intense grief and longing can block out the very thing you are searching for. They can block out everything. His example was that if you are banging on the door to God too loudly, you are not going to hear His answer.

If I, as Lucy’s mother, have a hard time remembering the real her, I’m sure it must be hard for the rest of you, too. Maybe it is easier in some ways, though, because you don’t have the intense longing to block out the memories you are trying to access. Whatever you can remember of her, please hold on to it and think of her from time to time. Share it with me some time. Keep it fresh and hold it in your heart. Scarlett will be depending on us to help her know her sister. Max might need some help remembering sometimes. I feel this is the best way we can honor her at one year and in the years to come.

I can’t believe we’ve almost made it through one year. I feel so proud and sad.

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.

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.

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

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

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

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

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

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

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