Two Ways to Help Kids with Cardiomyopathy Today

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.

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Two Sister Time

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!” 🙂

First Letter to Scarlett

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

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Celebrating the Music in All of Us

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:

 

Almost One Year

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.

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