Sisters and Daughters

Monday night during Max’s gym class, I checked my messages on the Patient Portal at my OB’s office. It was probably the third or fourth time I checked that day.  I was in the gym with Max, who was being clingy, so the signal wasn’t as good and the page wouldn’t load. I locked my phone and resolved to look again later.

Chris arrived and took over in the gym with Max, so I could have a bathroom break. Later, in the waiting room, I remembered and checked again. There it was, in big, bold letters “MaterniT21 Test Results”.

My eyes popped wide. I clicked. The doctor’s message said that the test indicated the baby is chromosomally normal and no further action was needed at this time. Relief flooded over me, followed by, “Where the hell is the gender result?”

I clicked on the actual test report and scanned down for the next clue to our family’s future.

“No Y chromosome was detected. This is consistent with a female fetus.”

Those clinical, carefully ambiguous words filled me with incredulous joy. It’s a GIRL, folks! A healthy girl!! She is still too small for us to get a good look at her heart, but we have successfully cleared another hurdle. She is still alive and chromosomally normal at 15 weeks!

I couldn’t help myself. Chris and Max were right by the door of the gym. I wrenched it open and whispered, “Honey, the test results are in”.

He looked at me expectantly: “It’s a healthy baby girl.”

He later said that was the longest sentence ever.

I have started to feel her move more and more, practically every day. It is such a relief not to have to wonder ALL of the time if she is still alive. Of course, every time I don’t feel her for awhile, I worry, even though I know that’s normal for this point.

I sat in the restaurant after gym class, happy, but in a dazed sort of way. I really couldn’t quite believe it. We toasted, we recorded a video (multiple takes) of Max announcing, “It’s a girl!” I just kept saying that I couldn’t quite believe it. A sickening feeling that we were replacing Lucy threaded through my shock, disbelief, and joy. Surprise at that feeling followed, since I know that couldn’t be further from the truth.

The test is incredibly accurate, though. The last ultrasound tech said she was 80% sure it’s a girl. I’ve had a gut feeling it was a girl for most of the pregnancy. (My gut has not been wrong yet, as far as I know. We never got to find out with Baby Bean.) The nurse at the doctor’s office said she calls it, “The 100% test”.

Of course, the inevitable guilt has begun to creep in. Knowing that it’s a girl has made me happy. It has made it less painful to think of Lucy. It has made it less painful to go in the girls’ section.

I think that is what is supposed to happen. This new baby is supposed to be healing. We wanted another girl, although we would have been delighted to have a little boy, and that’s ok.  I haven’t given up on the idea of perhaps having another boy one day.

But it feels wrong to have less pain about Lucy. I feel guilty about the fact that a boy result might not have resulted in affecting my pain about Lucy this way. I have worked very hard at not being obsessed with the gender this time and I’ve done a very good job, but I feel guilty that I might have felt the tiniest shred of disappointment at it being a boy. Hell, after the initial thrill of finding out the baby was still alive at 12 weeks and having that nurse say it looked like a boy (I really was thrilled on both counts.), I felt a twinge in the gift shop while picking out booties for the baby announcement photo. I felt like I would be locked out of the girls’ section forever.

I don’t want to feel like my daughters are two interchangeable people, like they are just babies, just a gender, not individual people. Those of you who know me have also probably guessed that it offends my feminist sensibilities that the girls’ clothing section is a metaphor for having a daughter to me. 😉

The fact is I don’t know this little girl as an individual yet. As I’ve written before, my knowledge of Lucy stopped at 15 months. We were just emerging from generic baby mode into little girl mode, never mind actually getting to know what she liked. That was still months, or even a year off. My only experience of mothering a daughter so far stopped with a baby who was just starting to blossom into a little girl. All I know is having a baby (which I had already experienced with a son) who I dressed in girl clothes instead of boy clothes. No wonder the girls’ clothing section symbolizes having a daughter for me. Plus, it is really fun dressing a girl, although I enjoyed dressing my son up way more than I expected.

I know that the initial shock and joy of hearing this news will mellow and integrate with my feelings of missing Lucy. They will coexist. I will have two daughters and they will be sisters, even though they will never meet in this life.

I am so happy to have this little girl. I can’t wait to meet her. Sometimes, the happiness supersedes the sadness. I know the mix is going to be beautiful.

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Trying to Find the Future in the Past

As time has passed, I have come to the realization that I know pitifully little about Lucy. I knew her as well as anyone could. But the more I write about her, the more I realize how short is the list of things I actually know about her as a person. Her personality and her likes and dislikes were emerging more right before she died. Despite her physical delays, she was just beginning to blossom … and then it was over.

I know all of the facts about Lucy’s birth, life, illness, and death, of course. I know what she was like physically. She had big blue eyes, brown hair, my dimple in her left cheek, and my long fingers and toes. She had long legs like Chris and Max. It seemed like she was going to be tall, like them.

When it comes to actual personality traits and preferences, the list is starting to get repetitive and frustratingly short. She was loud. She had a beautiful smile and a Pee-Wee Herman laugh. She loved stacking toys, nesting cups, and her shape sorter. She was becoming interested in Elmo and “Yo Gabba Gabba”. Her favorite songs were “Let Me Call You Sweetheart” and “The Wheels on the Bus”. She hated riding in the car. Her favorite word was “no” and she had about 15 different ways to say it, according to her mood. Her other two words were “Daddy” and “Uhh-ma” (Mama). She loved table food, especially Chick-Fil-A French fries, and never wanted baby food, even homemade. She didn’t enjoy being read to very much. She didn’t sleep very well.

That list right there is the product of me wracking my brain to think of everything I remember about her as an individual. I’m sure there are a few things I forgot, so the list is not comprehensive. There are 19 items on that list. That’s more than I thought there would be actually. Is that list so much smaller than anyone else’s at a particular time in their life? I’m not sure.

I still feel like I did not get to know her. She died at 15 months and, while she was blossoming into a toddler, there was still much of the baby about her. I am surprised sometimes when I look at pictures and see what a big girl she actually was. I keep thinking of her as a baby.

She only said three words. Thanks to the physical delays caused by her illness, she never crawled, let alone walked unassisted. She could not tell us about herself or show us her interests as well as other children her age.

She was a physical presence, a baby, a toddler, a daughter. Most of all, she was Lucy, but what does that mean? What did being Lucy Blythe Farmer mean?

This is the frustration of every parent who has lost a very young child probably. There is not only the human potential lost, but the fact that you don’t even know what that potential was.

I want to know what she thought about life. I want to know what she thought of our family. I want to know what her favorite foods were going to be, if she was going to learn to like reading, or be athletic, or musical, or into science and computers like her dad.

Most of all, I want to know that she loved me. I never got to hear her say it. I want to know that she thought I was a good mom. I want Christmas programs and her running to me with a smile after school and art projects and all of the wonderful things we’ve gotten to experience with Max. All of the things other parents get to experience with all of their kids.

Maybe I did know her. Maybe those 19 traits were all there was to know at that time. Maybe I really do know the indefinable essence that was Lucy Blythe Farmer and the grief and lack of her physical presence make it harder to remember.

It is more that I long to still know her. I long for more. Since I can’t have more, I want to squeeze more out of the time she was here. I want to mine the past for more, since there isn’t a future with her.

Sometimes I am able to conjure up an image of how she would be now. Sometimes, I even think I catch fleeting glimpses of her or still feel her presence in the night. But it is the Lucy of the past with the same 19 traits or traits I have seen in children of the age she would be now superimposed on her image. It’s not really the Lucy she would have been now. It’s a shadow, a projection, the product of a mother’s desperate longing for what she should have, but can’t.

All of these apparitions are a poor substitute, but a comfort, especially when I feel like perhaps I am feeling her actual spirit with me. That does not happen nearly as often as it used to. I’m not sure why.

However, I’ve ended up at a different place than I thought I was going to with this post. I suppose I did know Lucy. She was only 15 months old. There was only so much to know. So much was still locked inside of her. There wasn’t more to know at the time, but there was going to be. We can only surmise what it would have been.

The problem actually isn’t that I didn’t know her. It’s that I still want the future. I guess it’s easier to blame myself for not knowing her well enough during her life than to fully accept that I am just never going to know more.

Tongue-tied

Ever since Lucy died, I have wanted to talk about her, look at pictures of her, just be close to her any way I could. Unfortunately, this involves telling new people she died.

“How many kids do you have?”

“Two.”

“Oh, where’s the other one?”

(Slight pause.) “She died last May of dilated cardiomyopathy.”  (Or a few other variations.)

(Deer in headlights look crosses their face or their face falls and they look as if they have been dealt a physical blow.)

Then they usually say “I’m so sorry” or some variation on that and the conversation moves on. I have discovered that the more normal and matter-of-fact about it I am, the easier it is for me and my conversational partner.

Sometimes I just mention Lucy and if it’s a new person, they end up asking where she is or how old she is. And I have to tell them. It’s not like I can lie and pretend she’s still alive. No matter how much I might want to sometimes.

Why not just not mention her, you ask? Well, that’s complicated.

At first, like I said, I just wanted to talk about her. I took any excuse. Honestly, I was afraid it looked like I was forcing her into conversations at times and I worried that it made people uncomfortable. Although, really, I didn’t care that much.  If I can live without my daughter for the rest of my life, other people can know about it. Screw’em if they don’t like it or don’t want to hear about it. Kids die. You shouldn’t be banned from the solace of talking about your precious child just because he or she died.

Most people have been very supportive. But, man, I get tired of telling people my child died.  It comes up a lot more often than you might think.

Last weekend, Chris, Max, and I attended my friend’s annual Dart Bowl birthday party. I had a lovely conversation with a fellow party guest I had never met before. She was very good with Max and helped keep him occupied while we waited for our food. Max kept talking about the baby, so we told her we were expecting again.

At some point, I said something about how things were with my first child. I can’t remember exactly what. And then, for the second time recently, I saw the opportunity to mention Lucy … and I didn’t.

I don’t understand it. I have become weary of it, but I usually still do it. It feels like a betrayal to her not to mention her. I want people to know she existed. She deserves that. She is still a part of our family.

But when I tell people she died, the conversation moves on. They never ask anything more about her. I don’t want her death to be the only thing people know about her.

I talked to Chris about all of this as we walked to our car. He was comforting and understanding. I understand why it’s hard for me to tell people Lucy died and hard for them to hear. I don’t understand why a slight pause before I share the information has become full-on omission of it. I guess as more time passes I have become weary of people’s wariness of child death. Their wariness of sadness and tragedy. There is a mistaken idea out there that a happy life involves nothing but happiness and positivity. I sure used to think that. I used to avoid stories about children being hurt or killed like the plague, even before I had kids. For awhile, my reason was to avoid exacerbating my anxiety after my nervous breakdown, which I think was legitimate.

I don’t want to have to act like my daughter didn’t exist. And I don’t want the conversation about her to stop with her ending. There was so much more to Lucy than dilated cardiomyopathy and an early death. She was beautiful and strong and loud. She had a beautiful smile and a Pee-Wee Herman laugh. She managed to dance with Elmo, even though she never even crawled. She kept smiling and laughing, no matter how much medicine she had to take or how tired she felt or how many painful pokes she had to endure from the needles.

I know it’s hard to hear, but believe me, it’s much harder to say. For some people, a happy, normal life encompasses the fact that they lost a child. It is part of human reality, not some tragic mishap. Death is a part of life, even for children. We need to not just listen to their stories, but welcome them. And we need to ask for more than just the ending.

Those Two Little Pink Lines

Since I know you are all dying to know, here is the story of how I found out I was pregnant the fourth time. It is actually quite different from the first three times.

The first time, I saw the two pink lines, ran down the hall to Chris’s home office (He worked from home at the time.) and said, “Honey, look” with a huge smile on my face.

 

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Max (Nov. 4, 2008)

 

The second time, I saw the positive result, immediately thought, “There’s my girl” and ran downstairs to the kitchen. Glowing with excitement, I burst in on Chris and Max saying, “Honey, I’m pregnant!” We proceeded to get Max to pose for pics with me and the positive test. You can tell how bewildered he is in the pics. He wasn’t even two at the time.

 

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Lucy (May 21, 2011)

 

The third time, it was a Clearblue Easy test. I texted Chris at work: “Are you sitting down?” Then I texted him the picture. His response? “Oh, wow.”

 

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Baby Bean (June 13, 2013)

The fourth time was the only time we had to try more than once. It was also a pregnancy after two losses – the loss of Lucy last May and the loss of Baby Bean last August. Although I knew I had every chance of having another baby, I was terrified I wouldn’t be able to get pregnant, or that I would lose the baby, or that the baby would die of some terrible disease after it was born.

We tried for the third time in November 2014. By that time, I was on estrogen gel and taking my temperature every morning. My morning routine – wake up, take temperature before I move, do back extension, get out of bed. By mid-November, I added a morning pregnancy test to the routine. As with Baby Bean, I was having some bleeding. I couldn’t tell if I was about to start my period or if a pregnancy was starting, so I was testing. I really didn’t think I was pregnant, but if I was I wanted to know, so proper medical intervention could be taken.

On November 15, we checked Max into Dell Children’s for his tonsillectomy/adenoidectomy. I was fine until that evening, but my feelings of grief for Lucy and Baby Bean and fears of never having another child were triggered by that time. I was lying on the fold-out bed in Max’s hospital room, sobbing furiously, but as quietly as I could. I felt so cheated, so angry. I railed against fate, against having to try for another child more than once, against eventually having a third child, but not actually having three here. Chris did his best to comfort me and even brought me chocolate cake from the cafeteria. I finally fell into an angry, sad sleep.

Max woke up in the early hours of the morning. I climbed into his hospital bed with him and we managed to sleep another few hours. By then I had recovered my equilibrium. Max awoke and I took my temp and headed to the bathroom for my morning test.

As I watched, an amazed, incredulous smile spread across my face. A second pink line was finally appearing. I couldn’t believe it. I was thrilled, but also afraid, since I was spotting.

I left the bathroom and crossed over to sit next to Chris on the fold-out.  I whispered in his ear, “I’m pregnant.” He looked at me with tired, uncomprehending eyes. A smile spread across his face.

 

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Baby 4 (Nov. 16, 2013.)

(Yes, the pictures get less fancy every time you get pregnant, no matter how grateful and excited you are. In fact, I only took a picture of this one just now, for this blog post, even though I have meant to since the day we found out.)

For once, it seemed like something huge happened right when it needed to. I don’t think I’ve ever had such an immediate, obvious answer to my prayers. Despite all the tears and prayers that had been expended since Lucy’s death and Baby Bean’s loss, despite the disappointment of the two previous months, this seemed like it happened at just the right time.

Yes, I know many of you would not have thought to take a pregnancy test in the hospital the day after your child’s tonsillectomy. But, that’s just me. I was in a routine and I really did want to know and let the doctor know as soon as possible in case he could do something about the spotting. Really, anyone who knows me very well is probably not surprised that I still remembered to do it. J

Of course, this happened about a week after I wrote the post about having trouble getting pregnant. I admit, from the very beginning it felt like this baby making it was a long shot. The spotting the first week did not help with that impression. It took a lot of picturing a successful pregnancy to convince myself it might actually happen. We experienced a couple of big scares, but we are now on Week 13 and cautiously optimistic we will welcome a new baby next July/August.

Now we have yet another reason for Dell Children’s Medical Center to be a very special place for us with very special memories. They gave Lucy new life and good days feeling well when she was there. They gave Max a new lease on life after his tonsils were removed. And our first signs that a new life and new hope were on the way came to us there.

The 12-week Appointment and Ultrasound

The 12-week appointment, which included the nuchal translucency ultrasound, was this morning. I was feeling much better after making it to 12 weeks. I even found myself looking forward to this appointment. But, of course, last night, I became terrified the baby wouldn’t be alive when we did the ultrasound.

My fears were unfounded. Baby is very much alive. He/she has a heart rate of 157. (Since we don’t know gender, I am going to refer to the baby as “they”, because I don’t like saying “it” or typing “he/she” over and over.) They are measuring perfectly for their due date, moving around and doing everything they are supposed to do.

The NT scan was perfect. It ruled out 90% of chromosomal conditions, such as Down Syndrome and the Trisomys. It doesn’t mean that there is no chance this child will be born with one of those, but it is very unlikely. The skull has closed over the brain. There is fluid in the stomach and bladder, which means they are swallowing and making urine. We can’t tell much about the state of the heart until the baby is bigger, but it is a great heart rate at this point.

AND, this week the tech thought it looked like a girl! Last week, the nurse and I thought we saw boy parts. It is still far from conclusive, but it seems like the Internet was right when it said that boy and girl parts still look a lot alike at this point. The tech said she thinks there is maybe an 80% chance it is a girl. It will be interesting to see. I’m not buying any pink yet. Although I have a slight preference for girl, I am honestly fine either way. My expectations have drastically lowered. I just want this baby to stay alive and not have any serious health problems.

We did the MaterniT21 today, which will further test for genetic problems and conclusively tell us the gender. We should get the results in 1 1/2 – 2 weeks. I have heard of problems with false girl results with these tests, but the nurse at my doctor’s office assured me that is not the case with this test. I wonder if I will be able to fully believe in the gender until we see it on the 20-week sono, though. That’s what I’m used to.

So, it seems like we have survived the flu and baby is doing wonderfully! Thank you for all of your prayers and good wishes.

 

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Big News, Heart Month, and other Housekeeping

It’s been two months since I last managed to write on this here blog. I don’t understand how the holidays manage to consume all of our time, even when we try to scale back on them as we did this year.

And that is the main reason I have slacked off. Sheer busyness. But it is a New Year and it’s time to get back at it.

The holidays were not as bad as I feared. But I am relieved they are over and we have a breather before we face Lucy’s birthday, Valentine’s Day, Baby Bean’s due date, and Easter. I had one good cry Christmas morning, but it did not seem all that different pain-wise from most other days.

Let’s not even talk about May. I wish I could just wipe it off the calendar this year. J

I have lots of news. The first and most important piece – I am pregnant! We are safely out of the first trimester (just barely). I am due July 28, so I’m not expecting this kid before August 7. The first two came 10 days after their due dates. It was a scary 12 weeks at times, but we have made it through. I’ve already had four ultrasounds, because I kept getting frightened that the baby had died. Luckily, my new doctor’s office is very understanding of my situation and always squeezes me in for a quick check to ease my mind. I think this baby was part of the reason Christmas, Thanksgiving, and New Year’s were as bearable as they were.

We are so happy. We finally got to tell Max and he is so happy and not QUITE as fixated on the baby being a girl this time, which is a relief, since he/she was looking boy-like at the last ultrasound last week. But it is still way too early to be sure. However, I’m pretty sure I can feel the baby moving! It’s so much earlier this time, but this ain’t my first rodeo, so I am fairly certain I am feeling the baby. I stretched out on the couch the other night and just focused on him or her wriggling around and smiled. I don’t think I will ever take anything to do with pregnancy or babies for granted again. Neither pregnancy nor babies are easy or fun all the time. But I have a new appreciation for it after experiencing so much fear that I would never get to experience it again.

We have the nuchal translucency (test for Down syndrome) ultrasound this Friday and I think we are going to do the genetic blood testing that can also reveal gender. Insurance will cover it this time, since I will be 35 when this one is born. Now that we have crossed the first hurdle of making it through the first trimester, we have to make sure this little one is healthy. Of course, the main worry is cardiomyopathy, but please send prayers and good thoughts that this little one will look perfect in every way this Friday.

Besides being pregnant, I am now the Secretary of the SoCo Women’s Chorus, an ambassador for the Children’s Cardiomyopathy Foundation, and I have a new potential new project in the works with the American Heart office in Austin. But I am determined to still make time for this blog. I promised Lucy and myself that I would keep trying to write. I am not going to give up on that, no matter how busy I get or how long the hiatuses are.

In other news, Heart Month is coming up! February is both Heart Month and Lucy’s birthday month. Right now, my tentative plan is to share pediatric heart stories (particularly cardiomyopathy, but any pediatric heart condition is eligible) on my blog all month. I am also planning to showcase different pediatric heart conditions on the Team Lucy Facebook and Twitter accounts all during the month of February. If you haven’t “liked” or followed us yet, please do!

http://facebook.com/GoTeamLucy

http://twitter.com/goteamlucy

Please submit your stories and share this post with anyone you know who has a story to share. We desperately need to raise awareness of the plight of children suffering from pediatric heart conditions. I also might share transplant facts, so if you have a transplant story, I would love to share that as well!

As far as Lucy’s birthday, I am still working on how to properly observe it. For now, if you are a person who would have gotten a present for Lucy if she were still here or just someone who cares and wants to help, please consider donating to Children’s Cardiomyopathy Foundation. We would love for them to get a lot of donations in honor of Lucy’s 2nd birthday.

This is one of those housekeeping posts that probably isn’t the most scintillating to read. It will be interesting to see where the New Year takes me in life, grief, and writing. It was very hard to start a new year without Lucy. It felt so wrong. I have felt my pain change. It is being integrated into my life instead of coming at me in big rushes. I have to accept that life is going to have hurt in the background and still sometimes in the foreground and that that is the price of loving Lucy. Of loving anyone. It’s the risk we all take, whether we know it or ever have to fully pay the price or not.

It is harder to figure out what to say. I find myself not wanting to be as open about it as I was. I’ve found out who my friends are. I am lucky in that most of my friends did turn out to be true friends, with one noteworthy exception that I still feel dumbfounded and blindsided about. But I need to start turning to other parents who have been through it as well. The other day, several of us who have lost children to cardiomyopathy were sharing stories on the Children’s Cardiomyopathy Foundation Facebook page and it felt so good to share with others who had been through the same thing. Not just losing a child, but to the same disease. I hate that anyone has lost their child, but they get it. It eased some of my guilt about Lucy to hear their stories.

So, my journey through grief will still be chronicled here. But I hope to include more about my everyday life and how we are going to shape a future with all three of our children, where we are somehow still one family and not two separate versions. It will be hard, but I know it can be done.

 

 

 

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