Kittymomma's Adventures

Team Lucy’s journey (the first phase of it anyway) culminates with the Heart Walk tomorrow. I am so excited and so sad. I know the Heart Walk is going to be a wonderful day to celebrate Lucy and all of those we have loved and lost to heart ailments. It will also be a wonderful day to celebrate survivors. But I am trying to figure out where Team Lucy will go in the future without taking myself too far out of enjoying my present success.

The Team has given me a way to mother Lucy in the five months since she died. The fact is, I am still and will always be her mother. But it is really hard to figure out how to mother someone who is dead. And the Team has let me do that.

The Ladybug Jam last weekend was the birthday party we will not get to give her this year. In fact, it even happened on the five-month anniversary of her death. Even though we are planning a celebration for her actual birthday in February, it was wonderful to celebrate her life by trying to give hope to others last Saturday. I worked harder on that event than on any birthday party and almost even more than my wedding and I am so proud of the way it turned out. I am so proud that I had a wonderful core Team of friends who helped me with it as well.

I am very proud that I created this Team and just jumped in, even though I didn’t know what I was doing. I never dreamed it would be this successful. I was just hoping to have lots of bodies in the Walk wearing shirts with Lucy’s name and the words “pediatric cardiomyopathy”. And we are going to have that. But we have also raised over $14,000. Our original goal was $3000 and I thought it might be difficult to even make that. I am so humbled and touched by the enthusiastic response of family, friends, and people we don’t even know. I barely had to do anything besides post on Facebook to raise the bulk of this money. People just wanted to help. Team Lucy is proof that every person can make a difference and every donation matters, no matter how small.

I am very proud that I just jumped in and made the Ladybug Jam happen, even though I have never done anything like that before. I am a great planner and I love planning events. But I had to step out of my comfort zone for this one. I had to ask for help. I had to delegate to people and trust them to do the job right. I had to ask people to donate things for free. All of those tasks are ones I have been very uncomfortable with in the past. But I had to do it. For Lucy and myself. And I am so glad I did. I hesitated and changed my mind a million times, but I finally did it.

I am proud that I brought Lucy into this world. It was an incredibly hard pregnancy. I was in so much physical pain for weeks after she was born. It was very hard to be crushed with her diagnosis right when my physical pain finally went away. It was so hard to say good-bye. But every moment of it was worth it to be her mother. I am so proud to be the mother of a person who has had such an impact on the world. She was so special and she has inspired so many. I hope part of her legacy will be a cure for cardiomyopathy. I am going to do my best to make it so. But she has already left a legacy with her sweetness and bravery and purity of heart. She really was perfect. She never had a chance to be imperfect and I hate that. But every single bit of pain was worth it to be her mother. And if others can be helped through her life and death, it will almost have been worth it to lose her. Almost.

I tried to think of clever names for this team. Lucy’s Ladybugs, Lucy’s Lionhearts. Nothing seemed quite right and I finally just went with Team Lucy. And it is the perfect name. The two reasons for our success are right there: Lucy herself and the wonderful Team of people who signed up to walk as well as everyone who has donated and helped spread the word. Every single one of you is a member of the original Team Lucy, no matter whether you are listed on the Team page right now or you walk tomorrow.

This blog post has ended up being a love letter to myself basically. I am going to write a post soon thanking absolutely everyone who contributed to Team Lucy and the Ladybug Jam. But for now, I needed to give this love to myself. I needed to say to the world how proud of myself I am. I needed to own this success. I did not make the team successful on my own, but I brought Lucy into the world and I created the Team. I will never stop talking about Lucy and pediatric cardiomyopathy to anyone who will listen. (And even some who don’t want to.) I am very, very proud of that.

The Heart Walk is tomorrow. If you have not donated yet or would like to help some more, please visit our page: http://social.heart.org/cuY75Vg

One more time, the last for now: GO TEAM LUCY!!!

I’ve missed this blog. I haven’t written in over a month. That’s the longest I’ve gone since Lucy died. Lest you think I have forgotten my promise to her, I will assure you have not. I have been working on another Lucy-related project –Team Lucy’s Ladybug Jam, a family music festival fundraiser for our Heart Walk team. I have been working on it nonstop, partly because we started a bit late.

You might think the other reason I am driven about the Ladybug Jam is obvious, but I don’t think it is what you expect. The other reason (one of them) is guilt.

One of the things Chris and I hear frequently from others is how strong they think we are. You would think this would be nice to hear (and it is), but it’s not strictly true. The fact is, we weren’t always strong during Lucy’s illness and we haven’t always been strong since. We aren’t heroes or saints. I always thought being a parent would awaken unselfishness in you, especially if your child has a serious illness. But you aren’t always unselfish. You still get selfish. You get tired. Sometimes you just don’t want to deal with any of it anymore. You still want a break, even when you know your kid could die. And sometimes, you want to run.

I remember those nights in the hospital with Lucy screaming in her crib while I huddled on the pull-out bed and cried. I couldn’t soothe her. She didn’t want to be held. She didn’t want to rock. She was tethered to wires, so I couldn’t walk the room or the halls with her. I couldn’t leave her alone in the room. I couldn’t soothe her and sometimes I didn’t want to. I just wanted her to make it easy on me and just go to sleep. Because I needed to sleep, so I could face another day of sitting in a hospital room.

I remember one night in Dallas when I reached the end of my rope. I don’t remember the precipitating event. I just remember that I wanted to run. I wanted to run out into dark, unfamiliar downtown Dallas and just keep going. I actually sat down on the pull-out bed and put on my shoes, with Chris worriedly asking me the whole time where I was going and what I was doing. I didn’t know. I was just desperate. I had had it. I wanted to run.

I feel guilty about all of that. I did not do the things I feel a parent of a seriously ill child should do. I didn’t stay up late reading all the latest medical studies.  I didn’t get her into some cutting edge new treatment that miraculously saved her life. (It doesn’t exist, but even so.) It was all I could do to keep my head above water. It was all I could do to take care of a toddler and a baby who had a chronic illness and was deteriorating before my eyes. I know I did the best I could. But I could have done more if I really tried. And I didn’t. I just survived as best I could. It was all I could do to do what the doctors and physical therapists said and try to keep her alive. I didn’t have anything left to actually fight the disease.

That is why I am driven now. I want to make up for what I didn’t do when she was here. I want to find the cure I didn’t look hard enough for while she was still here.

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!!

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

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

“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 / 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.

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.

At the beginning of this pregnancy, I was obsessed with whether to go back to the Birthing Center or to a hospital. I have back-burnered the decision for awhile, because it was making me crazy. Besides making a pro/con list, I haven’t actually committed my thoughts to “paper” yet, so I am going to go ahead and do so.

A little background –my first child, my son Max, was born at St. David’s North. I was interested in the Birthing Center during that pregnancy, but my husband was nervous about the idea of being outside a hospital. I could see that and it was the first time for both of us, so we found a highly recommended OB who also had midwives in her practice. We hired a doula, wrote up a birth plan, and went from there. I had hopes for a drug-free birth, but was by no means certain I would pull it off. I had read about the dangers of epidurals, even though I knew plenty of babies who had been born safely with them. I wanted to play it safe and, I admit, I just wanted to see if I could do it without drugs. That was the straight-A student talking who took Latin in high school just because everyone said it was near impossible to get an A in it and I wanted to prove them wrong. I proved them wrong then and I did it again when I gave birth to Max. No one was more surprised than me when I made it through without any drugs. I was also very proud, but I remember thinking after his birth, “It is really sad Max will be an only child, because I am NEVER doing that again.”

It was an “easy” birth. Active labor was only about 12 hours and I pushed him out in 10 minutes. I did tear, but it wasn’t too bad. Stitching was no big deal. Most of the nurses I encountered were very nice. The midwife who caught Max was very nice, too, although she really only showed up near the end, so I don’t remember much about her part in it.

There were definite pros to this experience. Everyone was pretty hands-off and left me, my husband, and the doula to work through it unless we asked for help. No one pushed pain meds on us.

There were definite cons as well, though. They did get pushy at times. They insisted on putting the fetal monitor on me once an hour for 20 minutes. No continuous monitoring just like we asked, right? However, nurses get busy and sometimes couldn’t come back for more than 20 minutes to take it off. So, I ended up tethered to that thing more often than not and it made me nuts. Then, of course, there was one glitch in the baby’s heart rate and they insisted continuous monitoring was necessary. They found a portable one with batteries, thank goodness, but it was unnecessary and annoying.

I also did not like that Max had to be taken to the nursery for the Vitamin K shot and other newborn procedures. They did give us several hours with him before that and my husband went with him, but, quite frankly, I was confused and bewildered and exhausted and wanted my husband and baby by my side. Period. They also called me from the nursery and insisted he was diephretic and needed formula right away. They were only doing me the courtesy of asking what kind. I was confused and exhausted and just said, “Enfamil.” Later, I was pretty angry they didn’t just bring him back to me to try to nurse again.

They also worried about temperature fluctuations he was having and kept insisting on taking him back to the nursery to be under a heat lamp over my objections. My mom finally had a throwdown with the floor nurse after they refused to bring him to me and demanded to know if it was medically necessary for Max to be under the heat lamp. They admitted that no, it wasn’t, the same thing could be accomplished by holding him and sharing our body heat. I was too scared to insist he be brought to me, because, as a first-time mom, I was scared I was wrong and something bad would happen. I was very glad my mother stepped in. They brought him back, we all took turns holding him, and his temperature was just fine.

They also insisted on a hep lock. This did turn out to be a good thing, because I needed fluids after the birth. But they left it on practically the whole time I was in the hospital, even after the IV was no longer necessary. It was very uncomfortable and interfered with positioning during breast-feeding. Again, we had to demand that the nurse go ahead and take it out as they had promised to do.

They also tried to force Pitocin on me after the birth to encourage the placenta to come out. It had only been a few minutes since Max was born and the nurse was just about to inject it into my IV, despite the fact that I was saying no, loud and clear. The placenta can take up to thirty minutes to come out after birth and there was no reason for a rush. So, I am here to tell you that doctors and nurses WILL try to force things on you and ignore your wishes. Luckily, the placenta popped out while we were arguing about it, right before she injected the Pitocin against my will.

Finally, everyone started completely ignoring me after Max was born. He did have meconium on him and they had to suction him and make sure he didn’t inhale any. But even after that was taken care of, no one in the room would answer me when I asked when I could see him. I said several times, loud and clear, “When can I see him?” and was met with utter silence by the nurses and midwife who were still in the room. My husband finally asked and they answered HIM. Hmph. Max had to be whisked away right after birth because of the meconium, so I was very anxious to see and hold him.

Lucy was born at the Austin Area Birthing Center on Duval. Although some of the midwives were “crunchier” than me, I enjoyed the less medicalized, hands-off approach. I was poked and prodded MUCH less at the Birthing Center. (Of course, the three-hour glucose test made up for that in one fell swoop.) When Lucy was born, we once again had a doula and I was an experienced mom who knew what she wanted. And the midwife in attendance respected that. She was very hands-off. I said I wanted to get in the shower, she was fine with it. I wanted to get in the tub, she said fine. (Most hospitals in Austin don’t even allow birthing tubs.) I wanted to get out of the tub, she said fine. I said I thought it was time to push, she said I could try a little one. Then, she checked and advised holding off a little bit longer. When I said I was ready to get on the bed and push, she checked and, sure enough, I was ready. They checked me periodically with a Doppler to make sure the baby’s heart rate was ok. Every time, she looked up, smiled, and said, “Happy baby.”

I had issues with clotting after Lucy was born and the midwives handled it swiftly and with a mixture of natural and medical methods. They told me everything they needed to do and gently persuaded me when I was frustrated and tired of having things done to me. They got the bleeding to slow and there was no need for a hospital transfer. They kept us a few extra hours and let us go home.

The facilities were beautiful and comfortable. They were minutes away from St. David’s if a transfer was needed. I know people who have been transferred from there and it went quickly and smoothly. The midwife accompanied them and stayed at the hospital to make sure everything was ok.

Lucy was with me every second after her birth, except for when grandparents were admiring her and they were doing unpleasant things to get my bleeding to slow down. She, Chris, and I all got to catch a nap in the (comfortable) bed together after everything finally settled down.  Once again, I did say to Chris, “We’ve got our boy and our girl, that’s good, right? We can be done?” Chris said, “Speak into the recorder.”

I will say that some of the medical procedures were more uncomfortable than they needed to be. The midwife was not as adept at stitching as the midwife who attended Max’s birth was. Also, none of them could place the IV after the birth and had to call in a midwife from the South location after several attempts were unsuccessful.

I tried going to the Birthing Center for well woman visits, but my troubles with postpartum birth control sent me back to an OB. One of the doctors from my previous OB’s office had started a new practice and I went back to her. Once we decided to try for this baby, I went to my OB to get my IUD pulled. Turns out they have a new doctor on staff and she was available sooner, so I made an appointment with her. She questioned my decision to get pregnant again so soon after Lucy’s death. A subsequent phone encounter did not improve my opinion of her. Plus, they deliver at St. David’s and if I do go back to a hospital, I ain’t going there. So, I chose a new OB for now.

The fact is, I think I would pick the Birthing Center in a second, but for two reasons – I am hesitant about going drug-free again and I am a little worried about bleeding after. I have only seen the PA at my new OB’s office so far. She was very nice, but it is still such a different experience. For one thing, I had forgotten about how appointments at a busy OB’s office take for-freaking-ever. For another, it is just so “one size fits all” sometimes. Not to mention, they gave me a big bag of booklets and pamphlets to read. I wasn’t going to bother, but I broke down and skimmed them today. Big mistake. They are full of the usual “don’ts” and terrible “what-ifs”.

I like feeling in charge during my births. My body knows what to do and has already done it twice. But I do have some “fear of the known”. You can tell yourself birth is only one day (give or take) in the parenting journey. But it begins to loom very large in the last few weeks when you are staring right at it. It’s easy for me to say I can do it again right now when it is so far away, but when I really remember it, it gives me pause.

But I don’t know what an epidural is like. Maybe the devil I know is better. It can hurt going in and I don’t know how it will make me feel or if it will make it hard to push. I don’t want to feel as if my autonomy during birth has been completely stripped away. Maybe it wouldn’t feel that way. But my previous experiences have been so different. Maybe it isn’t broke, so I shouldn’t fix it.

Boiled down, here are the hospital pros and cons:

Pros

Epidural availability

More safety if bleeding happens again?

Ostensibly a few days to rest before I go home to reality

New doctors deliver at Seton Main, which is supposed to be great

More ultrasounds with OB. I get to see the baby more often and possibly discover gender sooner.

Cons

I would have to be away from Max and he has some trauma and separation anxiety surrounding his parents being away at hospitals.

Risk of infection in hospitals

Babies taken to nurseries

They don’t let you eat during labor, no matter how early a stage it is.

St. David’s doesn’t let you have your placenta without a court order. I’ve been told Seton Main lets you have it without a problem. I hope that’s true.

Pushing with epidural might be difficult. There might be complications.

I could not get a decent nap or night’s rest in the hospital. Of course, I’ve gained a lot more experience living and sleeping in hospitals since then.

Birthing Center Pros

Placenta easily obtainable and one of the midwives knows how to encapsulate it safely.

Beautiful, more homelike setting with necessary medical equipment

More hands-off, less monitoring, poking and prodding

Baby stays with parents

You go home sooner. This is better for Max and for my comfort level probably. I hate for him to have to meet his new sibling in the hospital and then leave.

Baby could be born in the same room as Lucy probably, which would be sweet and symbolic.

Water birth option

We have a coupon for $350 off our next birth. (Yes, really.)

Shorter appointments, more older sibling-friendly

They have a game plan in place to stop the bleeding faster, based on the previous experience.

I would see their perinatologist (who is supposed to be wonderful) for a Level II ultrasound.

Cons

No epidural available. I have experienced increasing anxiety as the birth approached both times. This has been worsened by the fact that both of my children came ten days after their due date.

Not so adept at basic medical skills.

Possibly more danger with bleeding

I’m not as crunchy as some of them are.

It will be interesting to see how this pregnancy and birth unfold.

I don’t know what to write today. My feelings are very confusing lately. I also haven’t had as much time to write. I usually write when Max is at school, but I have had appointments every school morning lately. And I’ve been trying to make our evenings LESS crazy so ….

Honestly, I’ve thought a few times about taking a break from the blog or just not writing about my grief anymore. It helps to get the feelings out, but I guess I am entering a new phase where I’m not sure I want to share my personal feelings with people so much anymore. It’s partly a new phase of grief, partly pregnancy hormones, I think. Pregnancy has had the welcome side effect of making my emotions more accessible. Unfortunately, I’d forgotten how easily I anger when I’m pregnant. I am very irritable. Basically, almost no one can win with me.

If you’ve ever been through a loss, you know that people want so much to help and don’t know how. Oftentimes, they either pull away from you, because your pain hurts them or because they don’t know what to say or they say and do the “wrong” things. Most of us have known people who suffered some sort of loss and we know that helpless feeling. Most of us have experienced some kind of loss and we have experience with people inadvertently being insensitive and cruel or just plain annoying and unhelpful.

I appreciate so much all of the support I have received from family and friends so far. Most of it has been fine. The things that have bothered me, I’ve ignored or just said, “Thank you” and moved on.

The problem is that most people I know have not experienced what I have – the loss of a child. We have a large circle of friends and acquaintances, so we do actually know a few other people who have lost children or have children with serious illnesses. We have gotten to know more since Lucy became sick.

This experience has opened up whole new viewpoints to me. I’ve seen the world of chronically ill children and their families. I am experiencing the world of people who have lost children. I struggle between wanting recognition and special treatment for the terrible loss of my daughter and just wanting to be treated normally.

I’ve been reading “The Still Point of the Turning World” by Emily Rapp. She lost her son Ronan to Tay-Sachs. She was also born with a congenital defect that necessitated the amputation of her foot. She spent a great deal of time in hospitals as a child, enduring many surgeries. So, she is a member of three communities that are marginalized or hidden in our society, but are actually much more widespread than most think, or want to think. She has a disability, she cared for a terminally ill child, and now she has lost a child.

Her experience differed from mine in that, although both of our children were diagnosed with terminal illnesses, Lucy did have some hope, no matter how slim it was, from day one. They knew their son would die from day one. But the thing we have in common is seeing things from the other side and seeing how no one understands what it’s really like to have a chronically ill child or to lose a child unless they have experienced it. And many don’t want to. I have not experienced the outright cruelty and insensitivity she has as a person with a disability and the mother of a child with Tay Sachs. That was one thing that was a blessing and a curse with Lucy’s illness. No one could tell how very sick she was from the outside. There were subtle signs. She was very quiet and very pale much of the time. But most people are not perceptive enough to note those things, especially when they don’t actually know the child in question.

The fact is, for many people, everything will always be fine. Nothing all that bad will happen. At the very least, they probably won’t lose any of their children. But child illness and child death are much more common than we think. Death is a natural and normal part of life, even though many of us have a very hard time thinking of it that way, especially for children. However, it does create a cognitive conflict, at least for me.  As I mentioned before, I want to be normal and I want everyone to recognize what has happened. For me right now, much of normal life is insensitive and cruel. Normal conversation at a girls’ night out can take a dreadfully hurtful turn for me and the speaker doesn’t even realize it. And I have to sit and smile and pretend it’s ok, hoping like hell they will drop the topic soon or casually leave the table. Because I can’t expect the world to revolve around me or stop and it’s not fair to make others feel embarrassed or like they have to walk on eggshells around me. I don’t want them to walk on eggshells around me. Because eventually people get tired of that and they walk away.

Stores won’t stop selling girls’ clothes. People won’t stop having little girls. The little girls in our family who were born the same year as Lucy will continue to grow and eventually become older than her and there is nothing I can do about it. Except be angry and avoid these things when I can. And hopefully, eventually feel better about it.

Now that I am having this experience I feel like it might be my responsibility to gently educate others about it. We are still a normal family. We don’t sit around bemoaning our loss constantly now, any more than we did after Lucy’s diagnosis. Both events caused grief and anger. It takes time to adjust. I often wondered if anyone realized exactly how hard it was for us when Lucy was sick. How much her diagnosis changed our lives. But we still laughed and enjoyed life then and we do now. Losing our daughter has changed our life, but it has not ruined it, no matter how much it might seem like it sometimes. You find a new normal.

Every day, you probably encounter sick children. Every day, you probably encounter someone who has lost a child. You can’t always tell by looking. And it can happen to anyone at any time. I don’t say that to scare you. It can be a freeing thought as well. I know that seems weird in our “knowledge is power, we can protect our children from everything” age, but it’s true. I breastfed my daughter, I followed all the safety rules. She still developed a fatal illness and died. There was nothing I could do about it. We basically learned that from the autopsy report recently. There was probably no way we could have anticipated or prevented her death. That was reassuring and frustrating at the same time.

I used to shy away before Lucy got sick. I tried to avoid sad stories, because they made me so sad. I am ashamed to admit that I still shy away from stories of children who have been murdered and feel like those parents have it worse than me, which is exactly what I don’t want people to do to us. For those of you who know someone who has suffered such a loss, you don’t have to do things. You don’t have to come up with words of wisdom. You don’t have to fix anything. Just listen. Ask them what they need. Tell them you’re sorry. Don’t tell them it will be ok. Don’t tell them it’s God’s will or plan. Don’t tell them you “can’t imagine” or you don’t know how they do it. Don’t say you could never go on if you lost your child. You may really mean that. You might be trying to express understanding or admiration. But it just exaggerates the fact that something bad has happened to them.

Also, do not give advice if it hasn’t been solicited or you haven’t experienced what they have. Just don’t. No one’s grief process is the same.

And if you’ve said or done any of those things to me or anyone else, do not feel bad. We know you mean well. We know you care. We also know this situation is very confusing for everyone. You want to be supportive and we want support and the last thing we want to do is hurt anyone’s feelings or make people afraid to give that support. I just want to make it easier and less confusing for all of us, if that’s possible.

I’ve had a protective wall around me since we lost Lucy. Sure, I’ve cried and been angry and sad at times, but I still don’t think it has really sunk in that she’s gone. I think that wall might be starting to come down. I find myself getting a bit shaky when I talk or write about her. I think I started to have that reaction right after it happened. The first few days, I kept having to remind myself to breathe. I found myself having to force myself to breathe a few times. But I found ways to keep myself busy and squashed it. Moving forward with the grieving process now is scary, but I know it will be worth it.

And I know you will all be there for me. I wouldn’t have it any other way. I would rather have you here saying the “wrong” things than have you avoid me out of fear. J

I had a meeting with Jackie Quintero, a marketing specialist for the Heart Walk, on Thursday morning. We ended up talking for two hours. She  was very touched by Lucy’s story and seems really fired up to learn more about pediatric heart disease and help us raise awareness of pediatric cardiomyopathy as well as other pediatric heart ailments. She is hoping to get Lucy’s story into the NW edition of Community Impact. She even thinks I should be a guest speaker at some Go Red for Women events! I am so very excited and hopeful that we can make a real difference for children with heart disease, particularly cardiomyopathy.

Chris and I are constructing a memorial page for Lucy on our website Operation Forever. We have finished the first part – a video tribute honoring Lucy and commemorating our life together as a family. I have wanted this just for myself ever since she died, but then we thought of the memorial page idea. We are also going to put the video on the Team Lucy page for the American Heart Walk. Part of the purpose of the Walk is to celebrate the lives lost to and saved from heart disease. We want to celebrate our amazing little girl and show everyone what they would be helping to preserve and honor through donating and signing up for our team. You can help children like Lucy. You can save other parents from saying good-bye to their children.

Most of all, though, this video comforts me. It reminds me what an amazing fifteen months we had with her. Lucy was so much more than her disease. Dilated cardiomyopathy did not define her. I can only imagine how amazing her future would have been, judging from this beginning.

Finally, we had our first prenatal appointment this week! I am about 8 weeks along and the due date is Feb. 28 (which means March 10, if this kid is anything like the other two). Everything looks great. Here is our first picture of “Baby Bean” as we have nicknamed him or her. The PA said babies like to snuggle up in the corner this early. I love to imagine him or her snuggling in there where I can keep them safe and warm.