The Reproductive Black Cloud and Burying Two Babies

“A Tale of Woe” – (noun) a sad story, a list of personal problems, an excuse for failing to do something

So I had two recent experiences that have made me stop and reflect on my own personal “tale of woe”. The first one is that I met with my new OB/Gyn. During my first appointment I had to give him my reproductive history. He started out standing up and by the time I finished my ridiculously extended story, he was sitting down with a dropped jaw and was speechless. It was the first time I shared the entire story, with all the details, to someone who didn’t already know. And it was a stark reminder of what the crap I have been through.

But in between those pictures were the ones of me covered in bruises from shots, laying in hospital beds hooked to IVs, looking obese while on months and months of bedrest, tombstones and oxygen tanks, etc., etc. Gosh dang it. It is no wonder that when Josh asks me about trying to get pregnant again, I literally have panic attacks. Every cell in my body screams “NO! NO! NO! NO!” and I put a very fake smile on my face and say, “If you ask me again I will kill you.” It’s a very loving marital exchange, I assure you. :o)

Now don’t get me wrong, I would love to have another adorable kid just like Maddie. I would love to have the family that I dreamed of. I would love for Josh to have a son to take to baseball games and for Maddie to have a sister to stay up late giggling with. And I would love to have more children as a defense against old folks homes, in case Maddie ends up hating me when she grows up.

But these last two very recent experiences made me realize that this incredible panic that I feel at the thought of doing it all again really isn’t that crazy. Now, I have never felt the need to explain myself to ANYone. Until now. Because this is kind of a big deal. There are grandparents who would love more grandchildren. And there are friends and family that want us to have a “happy ending.” So, let me try to explain with the least amount of words and pictures that I can.

This is me at the ripe old age of 21. I was perfectly young and optimistic and energetic. Josh and I just found out that we were having a baby and were so excited and overwhelmed with the possibilities. I remember when this picture was taken I was thinking, “I’m too young for this! I hope I can do this…”

And I did. And our dear sweet little Evan was born. What a gorgeous little calm baby he was. We were so happy! But a little every day I kept noticing something was weird. Something wasn’t right. I took him to his pediatrician and to an emergency room and tried to get the doctors to take me serious that something was wrong, just to be brushed off as a young ignorant mother. But when I took him to a pediatric neurologist, I was completely devastated by the news. Terminal? What!? Babies don’t die in this country and century. We thought we would have years with our Evan, but it was cut short. Shorter than we could have ever imagined. All we could do was hold him over the next few days until he took his last breath. I remember the completely helpless feeling and just wanting to fall apart, but using every ounce I had to keep it together so I could give Evan a peaceful and loving death. And thinking, “I hope I can do this.”

And I did. There is no doubt in my mind that his experience here, including his death, was filled with love and peace. But this was not what I had planned. I remember standing here in the cemetery, picking out the spot where I was going to bury my baby. I remember thinking, “Burying my baby!? I’m too young for this! I hope I can do this…”

And I did. Somehow, I pulled myself together enough to speak at his funeral and bury his little body, and then get out of bed the next morning. When Evan died, I remember feeling very hopeless. I knew we could never have natural children again but I also knew we couldn’t afford the grossly expensive procedure to have more children. I also very much felt like a mother in my heart but I had no child to take care of. This was the lowest point in my life. Then my mother offered to loan us the money to have more children. It was the most selfless gift anyone has ever given me! I gave myself 57 shots over the course of a few weeks and let me tell you it was miserable. But I never again thought, “I hope I can do this.” My thoughts had changed to, “I can do this.”

And I did. Despite the miserable procedure and the medical complications, I succeeded. I was pregnant with my little Maddie. But this pregnancy was when I realized that I wasn’t like the other women in my family. I always assumed that having babies wouldn’t be an issue for me because my grandmothers and aunts and mother all had about a hundred babies each. This would be no sweat! Alas, I was born under a reproductive black cloud. This pregnancy was hard. I spent the first three months of it on bedrest due to complications from in vitro. Oh the boredom! The misery! And just when I started to feel healthy and wonderful again, I went into preterm labor at five months along. I was determined NOT to lose this baby, so I spend the last three months on strict bedrest taking medication that stopped the contractions and only getting out of bed to shower and pee. When I look at those pictures, it was obvious that I was depressed. Wouldn’t you be if your husband was working full time and finishing his last year of law school (and therefore was rarely home), and while you laid in bed with no cable (and before Netflix and Tivo existed), and were so full of drugs that you couldn’t read a book because your mind couldn’t concentrate? I was so incredibly miserable, but I was so determined, with my new mantra being, “I can do this.”

And she did. She survived that first night, and after two weeks in the nursery she came home with me. But not without a whole lot of baggage. The doctors said she had weak lungs and that there could have been brain damage because of how long she went without oxygen when her lungs and brain hemorrhaged. Once again, I remember thinking, this isn’t how it was supposed to happen! I brought her home from the hospital that night and laid her in her crib and that was the first time I had a panic attack. What if she stops breathing? What if she is brain damaged? What if she dies! I had these thoughts every single time I laid her down for naps and bedtime for her entire first year of life. Can you imagine!? An entire year!! Until I got her out of bed on her first birthday and she was looking up at me as gorgeous as ever, and with a huge smile. And I remember thinking, “Huh. That’s weird. I think she is going to stay.”

And she did! Despite my reproductive black cloud and all the odds, this one got to stay. How crazy is that? And not only is she still here, but I actually like her. And she is smart, and gorgeous, and sweet, and a miracle! And I was hopeful again. Well, obviously if in-vitro worked once, it will work again! So I did it again. And again. And again. And it didn’t work. Why didn’t it work?! Any little thing that could go wrong did. I was practically killing myself (not to mention our finances) trying to have more children through in-vitro, and it wasn’t working. And I was hopeless. And we stopped, and took a year to think about it. And we considered all of our options. Including the one that we knew we would never consider again. What if? What if we actually tried another natural conception? The chance of a perfectly healthy little baby would be 3 out of 4. Maybe those weren’t such bad odds after all? If we could just have one more healthy baby I would be done and just grateful for the two that I was given. And I distinctly remember thinking, “Surely, surely a mother wouldn’t have to go through that twice!”

But I did. My little Charlie’s pregnancy was the hardest thing I have ever done in my life. Can you imagine having to get out of bed every day for the remaining six months of your pregnancy, KNOWING that your baby would die? At three months pregnant, I heard the devastating news that he was, in fact, going to have SMA. I cried for 48 hours straight. And then Josh said, “We are keeping this pregnancy. And we are going to hold our son. And we are going to give him the same life of love and peace that Evan had.” And I felt complete calmness. Yes. That’s exactly what we were going to do.

And we did. This picture was taken on the plane ride back from the SMA specialist. We had just received the news that his SMA would be as severe as his brother’s. And I remember thinking, if I just hold him really tight he can’t go anywhere. He would just stay in my arms forever.

But he didn’t. Once again, I felt the incredible helplessness of holding my baby while he struggled with his last breaths. And this time, it was much uglier. It was no where near as peaceful as Evan. Charlie was a fighter. And he fought hard. Really hard. And it was hard to watch. Really hard. And it broke my heart all over again. But this time I was older and wiser, and I knew that we would be okay eventually.

And we were. Evan had taught me so many lessons, and Charlie was the one that tested me on it. And I felt full of life and love and hope again, despite everything in my life that could have turned me in the other direction. But Charlie also reminded me that Josh and I create the cutest freaking kids on Earth. And despite feeling incredibly exhausted, I thought, “Okay, I can do this one more time.”

And it didn’t. Seriously? &$%# @&?% $*@? And every other four letter word I can think of! Cause now I’m sitting here wondering how many times I thought to myself, “This is the last time.” And the answer is, I told myself that every freaking time! Although I am only 30, I feel very old. My body is tired. My heart is tired. I am tired. Just looking back at these pictures has aged me at least five years.

And it makes me think that I no longer care when everyone asks me, “You only have one kid?” “Are you having more kids?” “When are you trying again?” Or when people think Maddie is spoiled because she is an only child, or when mothers of four look at me and think I’m lazy or selfish because I only have one.

And I am suddenly aware of all of the benefits of a smaller family. On the positive side, she is really cute. And I have never had to scream, “Stop fighting with your brother!” And it’s like I now feel peaceful about the way my life is instead of wondering what it would have/could have/should have been. And when I read this quote the other day it was like the world stopped turning for that moment and everything made sense: E.M. Forster “We must be willing to let go of the life we have planned, so as to have the life that is waiting for us.” Yes! Thanks E.M.! That’s exactly what I have been trying to express!

Of course, there are still the times when Maddie says, “I just wish I had a brother or sister,” that nearly breaks my heart. (Although she also says, just as fervently, “I just wish I had a ____” [fill in the blank with any kind of pet or the newest toy]). And it equally breaks my heart when Josh says, “But I never imagined my family being like this. I always imagined more kids. I always thought I’d have a son to take to baseball games.” And when I kindly explain to him that I could do invitro all day every day for the rest of my life, and I still may never be able to give that to him, he says that he will need to mourn the family he once imagined. And I say I understand that, because so do I. And I say I will forever be sorry that I couldn’t give him that family we both imagined. And then he curses our SMA genes. And so do I.

But the story isn’t necessarily over. We are aware that there are other options out there. And we still have eight frozen embryos in a freezer in Virginia. And who knows, maybe one day I will actually give in to Maddie’s requests for a puppy. But just know that right now, I’m okay with the way it is. And for the first time I don’t feel this insane pressure and drive and sadness pushing me to hurry! Hurry!

And I just want some time to take pictures of me looking and feeling good and being my normal adventurous self for a little while…..And if that is the “happy ending” that is waiting for us, I think I’m okay with that too.

Check out Rachel’s amazing Angel Gowns project.

Story written by: Rachel