Kittymomma's Adventures

Our family eats spaghetti for dinner at least once a week. Although now slightly modified to accommodate the gestational diabetes diet (I have not been diagnosed with that and probably don’t have it, but my glucose on the first test was slightly high.), we still eat it weekly.

Max, like many kids, prefers his with no sauce and meatballs. I have made homemade meatballs in the past, but mostly heat up the frozen kind. One day, I discovered we were out of frozen meatballs. For once, I thought of a great hack at the right time and simply heated and chopped up turkey breakfast sausage links.

Max LOVED it. He actually asked for more links after dinner. We couldn’t believe it.

The next week, during our weekly shopping trip, we headed down the frozen food aisle. Like most four-year-olds, Max is full of questions all the time, especially during shopping trips.

“Mom, what are we getting in this aisle?”

I responded somewhat abstractedly, “I’m looking for the frozen meatballs you like, honey.”

Max stopped and excitedly yelled, “No, homemade! HOMEMADE!!”

I realized, to my great amusement, that he wanted the chopped up, turkey breakfast sausage links. He knew we chopped up frozen breakfast sausage, but to him, that is homemade. Forget the fancy, turkey pesto meatballs I concocted from the Weelicious cookbook once upon a time. Max loves my kitchen hack meatballs. I felt an absurd sense of pride. Not only did I think of a way to save dinner at short notice with something we already possessed, but my son actually liked it, ate it, and asked for it again.

Now, we enjoy our weekly spaghetti topped with breakfast sausage. True to four-year-old form, Max does not always eat it. However, the pride I felt in the store when he asked for my “homemade” meatballs, will last me through the next few weeks of preschooler culinary arbitrariness.

CRASH!

The sound issued gleefully from my son’s mouth, echoing the sound made by Diesel 10 smashing through a carefully constructed pile of his cronies from “Thomas and Friends”.

Her Pee-Wee Herman laugh echoed through the room. It was a delightful, hiccupping, halting sound, full of joy and beauty despite the similarities to the aforementioned comedian. Max and I both looked at her with surprise and pleasure. He had made Lucy laugh! She thought it was funny when he smashed Diesel 10 through the other trains.

“Max, do it again! She likes it! You made her laugh!”

Max beamed with pride. His smile filled his face and his eyes shone as he carefully piled the trains again and pulled Diesel 10 back for launch.

All three of us sat on the living room rug together in the sunshine of that Sunday morning in May. I grinned in anticipation of the next crash and laugh. Lucy peered expectantly up at her brother from her position on her tummy.

CRASH!

Giggles from all three of us filled the room. That was the biggest crash yet, all done to impress his sister and make her laugh.

That happy playtime scene occurred on the morning of Mother’s Day 2013. As far as I know, that was the last time they played together. Lucy died mere hours later, but she spent that morning laughing as her brother crashed his trains with gusto to entertain her. I’m so glad we made time to play that morning.

A pink shirt with red boots on it, which was once a white shirt with red boots, unraveled me.

I ruined a shirt in my first load of baby clothes for Scarlett. (I might be able to fix it with Clorox for Colors, but I haven’t tried yet. And actually it doesn’t look so bad pink.) I’ve become so accustomed to throwing everything in together that I forgot about separating the colors from the whites in the load of new baby clothes. There was a pair of bright red socks and one of bright red pants. I even forgot about my color catchers.

Palm to forehead.

I hardly ever make mistakes with laundry, but I was just so excited to finally wash some baby clothes. My excitement made me careless.

Now the guilt and anxiety wouldn’t go away and it was a familiar and unnerving feeling. I felt like the child who couldn’t stand for her book cover to be bent, the high school student who scrutinized every interpersonal interaction, the college student who couldn’t stop checking her doors every night.

Why were these feelings back? My anxiety, OCD, and intrusive thoughts had been so well-controlled for so long with only brief flares here and there. I have worked so hard for so long. Why do I have to keep dealing with it coming back?

I wrestled with this the rest of the afternoon. I tried so hard to let it go. My husband tried to comfort me. A birthday party that afternoon distracted me for awhile. Later, after Max was in bed, I still felt terrible about it. I knew I wasn’t going to feel better until I successfully laundered more baby clothes and didn’t mess anything up.

While I sorted clothes in the girls’ room, it finally dawned on me. I don’t know why it took me so long to put this together. The anniversary. Mother’s Day was the next day and the one-year anniversary of Lucy’s death the following day. Remembering how we suffered the ultimate loss both of control and life that weekend was causing me to struggle for control a year later. My grief for Lucy and anxiety over doing better with Scarlett were combining to make me lose my mind over a shirt. Ruining a shirt in the first load of laundry for her felt like my first failure in mothering her, as silly as I know that is.

This realization helped me feel better, but the last few days have been hard, anxiety-wise. I know it will pass, as it has before, and that I know how to deal with it if it doesn’t. My mind is struggling to prove it can keep death at bay for this child by controlling every detail and also probably trying to distract me from grief over Lucy. It doesn’t help. It just makes me angry and exhausted. At least I know what my mind is up to, but that just makes it more frustrating in some ways. I hate it when I know my mind is obsessing needlessly and I can’t make it stop.

At least I know I can be okay. Hopefully, just getting through the next few days is all I need.

I’m 35 today. My post about the first anniversary of Lucy’s death pretty much covered the yearly retrospective angle. So, I will talk today about a corollary to that post – the joys and fears of having a second living child again.

I am overjoyed to welcome this baby and so excited about it. The anticipation for her arrival is overwhelming at times. I do feel some trepidation about entering the baby world again, mainly the interrupted sleep and having to work around naps. However, I am just so excited that, even though I warn myself to appreciate sleeping through the night right now, I can’t help wishing for the next 2-3 months to fly by.

This is a second chance for me. (Or is it third?) I get another chance to do this all over again and do it better this time.

The problem is that part of me is afraid I won’t do better.

That’s silly, because I do better with each child. I joke to Chris sometimes that we should have 10 kids, so I can be perfect. 😉 There is so much I feel guilty about with Lucy, though. As far as the accomplishments I listed in my last post, I worry about their place in my life once I have a baby again. I do not want to lose the progress I’ve made, but I don’t want to obsess about not writing and whether I will go back to it while I should be enjoying my newborn daughter. I know normal life will fall by the wayside at first; I’ve done this twice already. With Max and to a lesser extent Lucy, I felt like a failure, because I did not seem to be able to do all the things other mothers did, even those with young children. I seemed to have time for nothing but mothering and then grasping what time I could for myself to stay sane.

The fact is, we made this choice and, in my mind, no other choice existed. I want this baby and I want Max to have at least one living sibling. I’ve worked hard to change my habits and priorities, so that fitting writing back in to my life will come more naturally once the baby is older. Plus, we have literally done this before. This is the third newborn we will bring home, we have had more than one child already, and Max will be much older and an experienced older brother this time. I believe that I will take the newfound confidence I described in Wednesday’s post and apply it to mothering and writing. Believing in and doing it right now will help me to believe and do after the baby comes. I just know it.

This is familiar and uncharted territory all at the same time. If I can traverse the uncharted territory of mothering a child who has died, I can find my way through mothering my second living/thirdborn/fourth overall just fine.

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.