Team Lucy wants YOU!

Team Lucy, the team we have formed in memory of our daughter for the Austin Heart Walk on Oct. 19, is doing wonderfully! There are 55 days left till the Heart Walk and we have exceeded our monetary and team member goals. We have 34 team members and have raised $5125 so far.

Our team is also ranked 44 out of all community teams in the nation and no. 2 out of ALL Austin teams including corporate teams!

We are overwhelmed that so many have joined us in honoring our daughter. It means so much to us that she touched so many lives and that so many want to help fight pediatric cardiomyopathy.

And believe me, we have a fight on our hands. Pediatric cardiomyopathy is a vicious disease. It has a higher mortality rate than pediatric cancer. It is very difficult to detect. An estimated 30,000 children are being treated for it in the U.S. right now, with another 30,000 going undiagnosed. Sadly, the disease is often only detected post-mortem.

Even when detected, there are no good treatment or surgical options. The only surgical option is transplant. The only medicines available are the same ones given to adults. Most of the research has been done on adults. There is no cure.

We want to help other families who are still actively fighting this disease. We want to keep them from having to say good-bye to their children like we did. We want to CRUSH the disease that took our beautiful daughter from us last Mother’s Day.

Please sign up to walk and/or donate if you can. The bigger our team and the more money we raise, the more a big organization like American Heart will sit up and take notice of pediatric cardiomyopathy. And we really, really need for everyone to sit up and take notice.

Here is the link to our team page: http://social.heart.org/cuY75Vg. There are buttons to join the team and donate there.

A year ago, I probably couldn’t have told you what cardiomyopathy was. Now it is one of my life’s goals to stamp it out. Please help in any way you can. We are grateful for every team member and every cent.

Go Team Lucy!!

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Me with the poster featuring Lucy’s Community Impact story and picture at the Heart Walk kick-off last Wednesday.

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Letter to Baby Bean

Dear Baby Bean,

I started this letter the night before our last doctor’s appointment. I was so excited to see you on the ultrasound machine and see how much you had grown.

We both know that is not what happened. But I don’t want to dwell on the particulars of that right now. Much of what I had planned for the original letter is still pertinent and I still want to say it to you and hope that you know it somehow.

You were my precious, longed-for third child. I wanted you before your big sister Lucy died, but I had a different plan that probably would not have resulted in you. I planned to space you out more from your older sister, because having Max and Lucy so close together was wonderful, but it was very hard. I wanted to do something different next time. I also wanted to wait until your sister had improved or had successfully recovered from heart transplant and stabilized.

Your existence was by no means certain. There were times when I really thought it was not fair of me to want a third child or I could not handle it. I simply wanted another and your father and I did discuss if we should have another child in case we lost Lucy at some point. We did not want Max to lose his only sibling and have no chance for another one.

But we did not want you to simply feel like a “spare” child or for Lucy to feel like you were her replacement. It ended up we did not need to worry about those things. Not exactly.

Your sister died unexpectedly and I suddenly found myself desperate for another baby immediately. So, we created you. It was much shorter notice than the other two, but you were still very planned and very, very wanted.

I worried about what it would be like for you, knowing you probably would not have existed if your sister hadn’t died. I was afraid you would feel like a consolation prize. We couldn’t have Lucy, so we settled for you. It was something akin to how I used to feel when I imagined who would be Lucy’s heart donor before she died. It saddened me to think that someone else’s child was walking around with Lucy’s future heart and they and their parents had no idea what was coming.

Nothing could be further from the truth. You gave me hope after Lucy died. You made life bearable. You made it easier for me to live in my daily world surrounded by small children and babies. You gave me something to look forward to. Nothing would have made me happier than to have Lucy, Max, AND you. The actual you, not the vague third baby born post-transplant that I had planned. I already loved you so much. I daydreamed about holding you the first time so many times. I wasn’t going to let anyone else near you. J

I remember telling your father in the first weeks after Lucy died and we found out about you that I felt so torn. I almost couldn’t want to be back in the past with Lucy, because there was no you in the past. If Lucy had lived, you wouldn’t have existed. No matter how much I wanted Lucy to have lived, I wanted you, too. Just for you.

I like to imagine that Lucy sent you to us. That you two spent time together in heaven before you came to us. I imagined her saying, “I put them through an unbelievable amount of shit and they were crazy about me! You’ll do fine.” (I don’t know why I imagine my toddler daughter cursing.) I even had a crazy daydream that one day you would point to a picture of Lucy and tell me you remembered her from heaven.

I am not sure if I really believe in heaven, but I hope you two are back together. Lucy deserves a sibling to be with. Max does, too, but hopefully he will have another chance.

I feel so alone without you. I miss you so very much. Your big brother and father were so excited to meet you, too, but they seem to be doing ok, although I know they are sad that you won’t be born.

I want to make sure I set down all the details I can remember here, so I will never forget. You were due Feb. 28. I thought you would be born March 10, because your brother and sister both came 10 days after their due dates. Your birthstone would have been an aquamarine. You would have been a Pisces. It would have been the year of the Horse. My favorite girl name was Ruby Louise. My favorite boy name was Dashiell Thomas. I thought you were a boy. I got morning sickness from dairy products and water and craved salty snacks. My skin and hair were awful. The gender tests were evenly split between boy and girl. Intelligender said girl.

I am going to choose Jizo statues in honor of both you and Lucy. I will always cherish my one bump shot with you and the few ultrasound photos I have. I also still have three positive pregnancy tests. I need to choose which one to keep and I will treasure it alongside Lucy’s. I wish I still had Max’s.

Thank you for being with me this summer. Thank you for giving me hope after Lucy’s death. Thank you for giving me something to look forward to. For making it possible for me to briefly be a mother of three. To briefly have two again. I will always miss you and love you. I hope I meet you again someday. I cherished every moment you were with me, even after I knew you were no longer living.

Love, Mama

 

 

I am not ok and I am not not ok

“How are you?” is the hardest question in the world right now. I draw a huge blank whenever anyone asks me. My grief counselor, my physical therapist, my brother, my sister. Nada. I just don’t know how I am a lot of the time.

I guess I am baffled by life’s cruelty. I am in disbelief that this is my life.

Sometimes I feel locked away from my feelings. I go around people and I act normal, but it feels strange. I can’t make conversation. I don’t know how to be.

As of last night and this morning, I honestly am not happy for anyone who is having a baby right now. I know several people who are having babies in the next few weeks and I am not happy for them right now. When I am at my best I can feel indifferent about it. Kind of. It’s not that I want anything to go wrong. God forbid. No way do I want them to go through the same pain I am going through. I just want everything to do with babies to be suspended for awhile. I know that’s impossible, but I just need all of it to stop.

The woman on the email list who sent out an email asking for second-time moms to share their birth experiences – it causes me pain every time I see a response to that pop up in my inbox. Every. Time. My second child is dead and I am no longer pregnant as of last week. Double whammy. Thanks for that.

I feel completely left out of life right now. I no longer have a baby and I will not have one next February/March. And the cruel, nasty kicker is that I still look and feel pregnant. I still get morning sickness. I still have to wear maternity clothes. And I don’t care about any of the perks of not being pregnant, because I am SUPPOSED TO BE PREGNANT. I had my long-anticipated glass of wine. It wasn’t as good as I remembered it being. It was pretty fun eating sushi the other night (and it was definitely wonderful to have a date night with my husband), but I can take it or leave it. (The sushi, not the date night.) I am supposed to be pregnant. Well, actually, I am supposed to have a healthy 18-month-old daughter right now, but let’s not pick at that wound at the moment.

I keep touching my belly. I keep taking excessive care to protect my stomach and to make sure I wash Max’s and Angus’s meds right off my hands. It doesn’t seem like anything happened sometimes. Honestly, I feel creeped out by the fact that the D&C was done while I was asleep. Because I know how the procedure goes. And I hate the fact that something like that was done to me while I was asleep in an OR full of strangers. I hate that there wasn’t an option to see the baby. That there probably wasn’t anything recognizable to see. That there was no way for me to find out the gender. I still wanted to know. I feel somewhat violated. I went to sleep pregnant and woke up not, but I didn’t experience any of the in-between. I’ve had very little discomfort since. How am I supposed to process that? How am I supposed to fully believe I’m not pregnant anymore? It just does not seem like anything happened.

It doesn’t help that my back has been worse than ever since the procedure. This time my back is messed up when I’m not pregnant. It doesn’t help that my doc doesn’t want me to do my physical therapy or my treadmill time. So, my back is messed up and my uterus is messed up and my hormones are in an uproar and I still feel pregnant. I can’t stand to have my son crawl on me or be rough with me in any way. I feel a desperate need to be alone sometimes. Then, the second I drop him at school or my husband leaves the house with him, I can see again that he is the most beautiful creature in the world and I suddenly can’t bear to be away from him. It seems like I can only appreciate him when he is leaving or asleep right now.

I am supposed to be “taking it easy”.  I can’t exercise. I can’t do PT. I can’t have sex. I can’t take hot baths. But it is still ok for me to take care of a four-year-old all day every day by myself apparently. That shit is messed up. “Taking it easy” apparently means cutting out everything I do for self-care or to give myself a break during the day.

Try as I might, much of the time, all I care about is having another baby. All I care about is that my baby is dead and I am no longer going to have another one.  I hate this waiting period until I get to wait in fear again. I want to know what is going to happen. If I’m going to have to go through another first trimester and grit my teeth through the fear and anxiety of the first 12 weeks until we get through the worst risk of miscarriage, I just want to get on with it. I am supposed to be pregnant. I am used to being pregnant. I want to move forward and know what is going to happen. I want my family. I want my life back. I want my son to have his companion back. I don’t want him to be the oldest kid spaced far away from younger siblings. I don’t want him to be an only child. I don’t want the only children around us to be getting younger siblings while he is back to being an only child. I don’t want any of this.

Maybe I finally have an answer to the question – at least for this morning. I dislike my doctor. I am not happy for anyone who is pregnant. I want to be pregnant again. I want my daughter back. I want the whole world to shut up and stop being so damn insensitive.

Life can be so Cruel

“Life can be so cruel / Don’t it astound you? / So when nothing seems too certain or safe / Let it burn through you / You can keep it pure on the inside / And you know what you believe to be right / So you’re not gonna crack / No you’re never gonna crack”

Garbage, “Run Baby Run”

A week ago Sunday night, Chris took the first bump shot for this pregnancy. I jotted down some notes for my first letter to the baby that night.

I went in for my 11-week appointment the next day at 11 a.m. Max and I met Chris there. I had been feeling a little nervous after losing Lucy. I worried that I would be there alone with Max and they would tell me there was no heartbeat. Mostly, I thought I was being my normal anxious self, but I still asked that Chris be there. By that morning, however, I was in a great mood and felt that everything would be fine.  I even felt a little silly for asking him to take off work.

I had felt a rather sudden decrease in my morning sickness and fatigue the day after Max’s birthday, a week before. I was a little worried, because that had never happened to me so early and I had read online that some people experienced that before a miscarriage. But I told myself all pregnancies are different and I was very close to the end of the first trimester. Symptoms started early, so maybe they tapered off early.

We met a new doctor that day. She seemed very nice. She did a pelvic exam to see how the baby was growing. She gave me an approving look. Everything felt right apparently.

Then she fired up the ultrasound machine. She said, “Oh, I don’t like this growth” at the exact moment that a fizzy feeling of panic started spreading through my body.

Chris had held Max up to see the screen. And I didn’t see a baby or a heartbeat. The panic grew with every passing second.

The doctor located the baby and pointed out that it still measured seven weeks.

“I don’t see a heartbeat.”

“But…. But there was one last time”, I faltered, knowing that that didn’t make any difference. But I kept saying it.

She turned off the machine, had me sit up. She took my hands in both of hers. She said nice things. I just kept staring at the screen.

Chris put Max down and he wandered around talking. He didn’t seem to realize anything was wrong.

They said we could come back the next day to confirm on the big ultrasound machine.

“We have to wait a whole day to be completely sure??”

The doctor looked me in the eye and said firmly, but compassionately, “I AM sure.”

We went home. I threw all of the pregnancy pamphlets from the doctor in the trash. I threw away my prenatal vitamins.

I went upstairs, gathered up every pregnancy book from the side of the bed, and put them away. I threw away a People magazine with Princess Kate and baby George on it.

I almost tore up the ultrasound photos from our first visit.

I went into Lucy’s room, shut the door, stood next to the crib where I found her lifeless body last Mother’s Day and told God I fucking hated him.

Then, I sat down in the middle of her floor and cried. I apologized to God, partly because I meant it or wanted to. Partly because I am afraid of him, even though that doesn’t really make sense, since I mostly only believe in Him out of habit these days. I want to believe for real, but wanting is not enough right now. All I know is that I said similar, terrible things to him when Lucy was in the hospital last November and, instead of getting better like they later said she would, she got worse and died. Despite my fervent prayers and apologies and efforts to do better. I said Novenas non-stop from December until May. And she still died. And despite my prayers for this pregnancy, this baby is gone now, too.

Chris knocked on the door, but I asked him to please go away.

I eventually came down. We told Max. He still seemed fine, which surprised me.

I spent the rest of the day lying on the couch and Googling “missed miscarriage”, “dilation and curettage”, and “misdiagnosed miscarriage.”

Chris took Max to Little Gym and I had him take my phone with him. I didn’t want to look at Facebook or talk to anyone or talk to the nurse when she called to schedule the followup. Then I ended up having to talk to the damn nurse anyway, because she said she couldn’t talk to my husband, even though I signed the damn paper giving them permission. So, I had to call her to tell her she could talk to him.

Then, I had to talk to them again to reschedule the appointment. They couldn’t get us in Tuesday like they promised and I refused to have Max with me on Wednesday for this repeat ordeal or go by myself. Or tell anyone so they could watch him.

I had a meltdown after taking Max to swim on Tuesday. The waiting room was filled with pregnant women, babies, and women with multiple children. I felt fine when I got there, but was a wreck when we finally left. A woman behind me kept tickling her child and making him laugh. I can’t stand the sound of a baby laughing right now. We made it out to the car, only to have a woman with a baby and a toddler show up next to us. I finally get into the car and shut them out and I look through the windshield and see a woman with a baby in a stroller frame and a toddler heading towards us. It was like I was being taunted with visions of who I was a year ago.

We went back Thursday morning. The closer the appointment got, the more panic I felt.  I had a very faint hope that the baby had been hiding from the ultrasound waves, or there was a twin who had died that we didn’t know about, or my uterus was still tilted and she just didn’t get the right angle. But I knew in my heart that the doctor was right.

Of course, the waiting room was more crowded than I have ever seen it. We located a couple who looked as unhappy as we did and sat down near them. We were finally called and we headed to the ultrasound room. I insisted on an abdominal ultrasound as well as transvaginal. I knew I wouldn’t feel right about a D&C unless every nook and cranny of my uterus had been searched. The tech was very kind, but matter-of-fact. She was nice, but not gushing all over us. We liked her.

I climbed on the table, repeating over and over in my head as she fired up the machine and the baby appeared, “This is not a living baby. This is not a living baby.”

It looked better than it had on the bedside sono, but it was very clearly not alive. It was floating there peacefully, but obviously lifelessly. In one shot, I could clearly see a little round head and the tiny arm buds. I’m not sure if I was happy to see that, but I guess I felt glad I did. To have even the tiniest idea of what this child was like was comforting and heartbreaking at the same time.

I asked the doctor for that picture when we spoke to her after.  It didn’t look quite as clear as it had on the screen, but I still wanted it.

The D&C was scheduled for the next morning. I had very mixed feelings. I was afraid of not waking up from the anesthesia. I was afraid of something going wrong and losing my fertility. Everything bad seems terrifyingly possible right now.

Everything went fine. And I have felt surprisingly fine physically since then. Mentally, I am having my ups and downs. The ups and downs are due to hormones, but I am very angry and sad. I feel like I have no say in my life right now. My doctor and I do not see eye-to-eye on when to try for another baby and my research does not back up what she is saying, either. It does not help that I never met her before the day she gave us this terrible news. All she has done is give us bad news and then remove my baby from my body. I don’t like her too much. Partly it’s a “shoot the messenger” thing. Partly, we just didn’t have a bond of any kind before this experience. Mostly, I do not feel like she listens to me or is treating me as an individual. She does not seem interested in collaborative care. She is very nice and seems to be a good doctor, but I am increasingly convinced she is not right for me.

I wonder if we will ever get to a place where the kids are just growing up in our house and everything is lovely and boring. It really doesn’t seem like it right now. A healthy baby feels like the most unattainable thing in the world.

If this post seems sad and bitter and angry, it’s because I am. And I want to feel that way right now. Honestly, I am afraid this post does not do justice to the depth of my sadness and bitterness and anger. Also, to my feeling that my feelings for how my reproductive future should go right now are automatically wrong. I am tired of feeling like what I want is wrong. I am tired of having what I want taken from me. I am tired of everyone else having what I want. I am just tired.

 

Hard, but worth it

I had a hard time going to sleep last night. I was on my way there, but I started thinking about fall. I love fall- the beautiful weather, football, holidays, pumpkin-flavored food everywhere.

But I started thinking about how Lucy won’t be there for any of it. She will never wear the Pebbles costume I bought a year in advance before I knew anything was wrong. I ended up wide awake and upset.

She got exactly one holiday season. We got seven holidays with her before she was diagnosed. Valentine’s Day, St. Patrick’s Day, Easter, Mother’s Day, Father’s Day, Fourth of July, and Halloween. After the diagnosis, it seemed like every holiday and special occasion was marred by it somehow.

For me anyway, there was an undercurrent of sadness on every special day, even her first birthday. (New Year’s Eve was an exception for some reason.) And it seemed like we ALWAYS got bad news from her doctor before something special we had planned. We found out she had plateaued (meaning the doctor now thought it would be a chronic condition or worse) a week before Christmas. We had thought she was going to recover completely, so that was a hard blow. We had been released from a trap, just to be yanked back in, right before her first Christmas.

We got disappointing news from the doctor right before her first haircut and her first birthday. I can tell in all the pictures of her first haircut that I had spent most of the day before crying. I usually spent the day crying after appointments with the cardiologist. (I looked the same way in the pictures we took when she was readmitted to Dell in February. We knew it was a bad sign she had to go back so soon.)

She had to be hospitalized right after our anniversary.

She ran a fever on her second Easter, so there was another threat of hospitalization.

She died on Mother’s Day, three days after my birthday.

To be clear, I in no way blame Lucy for this. She did not dampen our holidays and special occasions. I treasure every memory with her from every one. It was dilated cardiomyopathy that wrecked things.

Last year, I started planning Halloween in August. I picked the most adorable ladybug costume for her. I even wore a costume. I was a bumblebee. I didn’t plan to coordinate with Lucy, but was delighted with the result.  I was so happy and excited.

Halloween was on a Wednesday. She was diagnosed and admitted to the hospital the following Monday. November 5.

Those first days in the hospital, I kept looking at the pictures taken on Halloween. We had no idea anything was wrong. We had no idea our world was about to fall apart. All I wanted was to be those people again.

There have only been three times I wanted so badly to get back into the previous week. One was after my nervous breakdown. The second was after Lucy was diagnosed. The third was after she died. It was odd after she died, though. I wanted her back, of course, but I didn’t exactly want to go back. I didn’t want to have the uncertainty about her future back. I didn’t want to find her in her crib again. I didn’t want to have to dread and experience her death again. Every single bit of that was worth it to have her here. But once the blow had landed, I just wanted to rest. I was so tired and bewildered from the uncertainty, the worry, the fear, the medicines three times a day, driving to a pharmacy in Cedar Park that had a compounding room to get her meds, the once-monthly Synagis shots in winter. It had been even more intense since she was discharged from the hospital in Dallas. Added to the three times daily medications and jaunts to the Cedar Park pharmacy were weekly cardiologist visits, the twice-weekly physical therapy appointments, the PT exercises at home, the monthly visits to the transplant team, planning for the upheaval of moving closer to Dallas to wait for transplant. Suddenly, all of that was done. I missed all of it, because it was part of caring for her. I was happy to do all of it for her. Yet, I couldn’t help but be relieved that she and we didn’t have to do all that anymore. It was hard and it was just going to get harder. It’s a terrible thing to feel any kind of relief when your child dies. But she was going to struggle to survive her whole life with no guarantee of any reward. Part of me is very glad she never had to go through that and she never had to know the reality of her situation. I’m glad we didn’t have to tell her the truth about her situation. I wish she was still here. But part of me is glad we are not on that path anymore.

For a decade after my nervous breakdown, I never felt like myself. It is a terrible, terrible thing to never feel like yourself. To feel like you have been changed into a different person overnight without your consent. To feel like you and your previous life are completely inaccessible no matter how hard you try to regain them.

That is pretty much what it is like now that Lucy is gone. I eventually began to regain myself after my breakdown. It is an ongoing process. But she will never come back. The relief over her liberation and ours is still there from time to time (with the requisite accompanying guilt for feeling that way), but it is starting to sink in that she is really gone forever. I can see our life with her so clearly. I can imagine what she would be like now, although I wonder whether to imagine her well or the way she actually was. I can see and touch the Pebbles costume I bought a year in advance for a Halloween that will now never happen for her. I can see it all, but I cannot actually have it. I’m doomed to a futile longing I am already far too familiar with to bother fighting. In a weird way that makes it easier to bear. I had already had the rug violently yanked out from under me twice before. And it was unexpected both times. Even though we had no idea that Lucy would die so soon, we knew it was very likely we would lose her at some point. I guess I was somewhat more prepared for her death than I was for my breakdown or her diagnosis. But this is final in a way that the other two were not. And it still does not seem real some of the time. I mourned the loss of her health and possible loss of her future when she was diagnosed and then just hoped and believed she would be fine. And I suppose she is, but this is not what I had in mind when I used my birthday wish to wish she would get better. None of this is what I had in mind. But it’s mine and I have to figure out how to live with it. Just like I figured out how to live with her illness and find joy in life and gratitude for the lessons I learned from it.

It is a relief to finally let on to all of you how hard it all actually was. To admit it to myself. It was so hard. And it still is sometimes.

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