Honesty can be so ugly. Ugly and scary. It’s tough to praise someone’s honesty without first having to hear their admission of wrong. George Washington, for example, was honest… about killing an innocent cherry tree. I was a really honest kid myself… when I came clean about burgling a porcelain bunny from school. See what I mean? This ugly side of honesty has prompted generations of Southern women to pretty up the truth while coming right out with it. “Bless her heart, but honestly, she looks like a stuffed summer sausage in that dress…”
So today I bring you some ugly honesty. I’ve been wanting to write about what it was like when we first were told of Simeon’s spina bifida diagnosis. Being truthful about all that I thought and felt makes me nervous. It just wasn’t very pretty– grief seldom is.
Why I felt I should write about this at all:
- I read so many blogs from people looking back on their pregnancies after a similar diagnosis. Sometimes their reactions were like mine, but many times they were much more positive. Reading the positive reactions often made me feel terrible. How could I have felt so negative towards my baby? I guess this is my way of saying, “Look! I thought terrible things, but it didn’t last forever.”
- I want to be sure that anyone who stumbles on this blog and is in a similar situation knows that whatever they feel or think during this time is just fine. It’s okay to get a little nuts. It’s okay to scream like a kid and cry. It’s okay to feel sorry for yourself sometimes.
- I want to write about this before Simeon is born. I’m afraid that knowing and loving the little guy will cloud my memory of this time and, like I said, I want to be as honest as possible.
So, if you’re in the mood to hear from Perky Polly I’m afraid you should look elsewhere. Truthful Teresa is here tonight and she doesn’t mess around.
When I found out my son had spina bifida, I felt…
On January 20th, Greg and I went to my 20 week check up. We couldn’t wait to find out the sex of our baby. Before we left the house, I took extra care with my appearance. I selected what I felt sure was my most fabulous pregnancy outfit. I changed my earrings 3 times. I wore my “due in June” necklace. I might have even shaved my legs (since this is an honesty post, I must be honest and say that part might not have happened). I felt pretty darn cute. I knew that people at work were waiting for me to get back from the appointment so I had my car stocked with both pink and blue ribbons. I figured once we knew, boy or girl, I would tie on some quick flair before heading through the front doors of the school. I imagined everyone turning to look. There I’d be, the queen of pregnancy, all bedazzled in shiny ribbon. The clouds would open up, a dove would land on my shoulder, etc, etc.
And then we found out. Something was wrong with our baby. I had to call the school. I had to tell them I would need a sub for the rest of the day– something was wrong with the baby. I didn’t feel sad– I felt embarrassed. I was all dressed up for a party that wasn’t even happening. It was like stepping out of a limo, ready for prom, in your big puffy dress and over-sprayed updo, only to realize that prom isn’t this weekend. This weekend is your great aunt’s funeral and you look completely ridiculous. I felt like an idiot. I had been so sure everything would be fine. My baby would be healthy. I had even talked about how low-stress I was when it came to the baby’s health. Everyone was so excited that I was pregnant but now I knew the truth. I felt like a fool.
This one is difficult to be honest about. I’m ashamed that I felt this way, but there is no way around it. Off-and-on during that first month after we found out about Simeon’s diagnosis, I hated my baby. I felt so angry with him, so disappointed, so cheated. I felt like it was all his fault. I wasn’t angry with God or with myself. No– I was angry with Simeon. I remember calmly asking the doctor if babies with spina bifida survived outside the womb. When she answered “yes,” I was flooded with disappointment. I wanted this scary thing to go away and, at the time, the scary thing was Simeon. I didn’t want him to survive– I wanted a do-over. During our tier II ultrasound, they offered us the option to terminate. I sat there silently and hoped Greg would say “no” for both of us. I could never abort my child, but I was too angry and shocked to say no to that option. I hadn’t signed up for this and I wanted out. I remember feeling the baby kick on the day we got the news and I cried for him to stop. I didn’t want to be pregnant. I wanted it to all go away.
So much of those first 2 months was about letting go of my expectations. When you don’t get what you expected, it can be very disappointing. Even after I knew Simeon had spina bifida, my mind refused to let go of the child I had been imagining for so long. I would see flashes of that imaginary kid– the kid who could run, who didn’t need a shunt, who was just like everyone else except he was all mine. Of course, he wasn’t mine and had never been, but I had created memories with him and letting go of those broke my heart.
I think being disappointed can make you really dig in your heels. For a while, even though I knew I couldn’t change the situation, I railed against the unfairness of it all. I shook my fists, I stamped my feet, I screamed, I cried until I was sick and exhausted. I hadn’t gotten my way and my disappointment prompted more then a few tantrums that would have made a 2-year-old blush.
Boy, was I green with envy! I remember Greg and I sitting in the doctor’s office waiting room, sneering at this little blond toddler who waddled from one side of the room to the other. She looked at the fish tank, she climbed up on a chair, and (as if that wasn’t enough) she jumped, for pete’s sake! Who did this little gymnast think she was?
I was jealous of other pregnant women, too. Their pregnancies weren’t tinged with sadness like mine was. How was that right? I am ashamed to say I even felt jealous of women who had terminated their pregnancies. On the surface, it was like they had made their problem go away. I, on the other hand, was going to have to face this and I knew it would be painful. It didn’t sound like my idea of a good time.
During this time I felt so sorry for myself. I was too young for this to happen to me, I wasn’t wealthy, I couldn’t be a stay at home mom, I didn’t have family in town to help, Greg was still looking for a full-time job, we didn’t have air conditioning in our car, we didn’t own a home, we didn’t have enough in savings…
Greg and I jokingly refer to this time as the “sad spiral.” I felt we had gotten a rotten deal and so I took a nice long soak in the pity pool. And I don’t feel sorry about it.
So here’s the million dollar question: Did I take folic acid while we were trying to get pregnant? No. I didn’t.
And, even though I knew intellectually that this would probably not have been enough to change Simeon’s condition, I felt sick about it. Why didn’t I just take the stuff? Why didn’t I read more about it? Why didn’t I see the doctor before we started trying to get pregnant? Why did I just figure nature would work itself out and things would be fine? Had I been careless? Had I been foolish? On more than one occasion I held my stomach and begged my son for forgiveness. I asked him not to hate me. I cried and said I was so sorry over and over again, but felt no relief.
Guilt haunts you like nothing else.
|Blessed are those who mourn, for they shall be comforted. –Matthew 5:4|
But here’s the amazing thing: during all of this time, during all of this fear, I never once felt far from God and I never felt alone. I have never been one to wake up at night and pray, but throughout those first months I often did. It was in the quiet calm moments, either alone or saying evening prayers with Greg, that I could gather myself to face the next day.
At some point trouble gets too big and unless you’re willing to give it over to God, you’ll be swallowed up. As terrified as I was, I felt held up (and still am) by something outside myself and by so many caring people around me. I felt sure that I had to do and feel these things first if it was going to get better. If anyone reading this is facing something similar, know that it’s alright to let yourself be in the dumps for a while. The good stuff is on the other side. You can do it.
One last thing and then I’ll end this monster of a post. My brother (Joel) and sister-in-law (Sarah) are in a band called Lulu Mae. One of their songs has been following me around during this time and I wanted to share it. It’s called The Fiction of Speed. Now, I know it was probably written with marriage in mind, but I think it is also a reflection of my experience these past weeks. It’s about how love that grows over time is stronger than love that springs up quickly. True love doesn’t come in an instant but needs to be cultivated and tended. This is what falling in love with Simeon has been like. Love that takes work is so much sweeter– and stronger too. This is the good stuff.
The Fiction of Speed
All the things that we have seen
on the television screen
where two people fall in love–
they’re not true!
I mean you know you have my heart,
but that’s not the way it starts.
The years they are blooming around us.
Please don’t say you’ll be afraid of time.
And love at first sight,
it might give you one night.
Me, I’d rather be with you forever.
And the fiction of speed
is not appealing to me.
No, the things that come easy
aren’t worth it.
Please don’t say you’ll be afraid of time.
And if love is instant, then I don’t want it.
Find more great music from Lulu Mae