Being Selfish

When Patricia died, I was amazed the world continued spinning. I had a hard time understanding how life could go on when our family had suffered such a tragedy. One of the normal feelings I experienced was anger. At the time, my intense anger made me selfish. I believed that because I lost a child, all of the other things in my life should be easy. Everyone should be nice to me, after all, don't they know I just lost my daughter? Unlike some people who prefer to grieve privately, I wanted people to go out of their way to make grand gestures of kindness and support. Looking back, I know it is because I felt the more people did for me, the more they were acknowledging Patricia's life and how much it hurts me to live without her.

My husband felt similarly. In fact, after Patricia died, he began playing the lottery. Our three birthdays make a perfect five-number pick and our anniversary month and day is the same, hello Powerball number! The year she died, her due date of May 30th was a draw day and I'll admit to being genuinely surprised when we didn't win. After all we suffered, we both felt we deserved something wonderful to come our way. (17.5 months later, we still haven't hit the jackpot but my husband continues to faithfully buy tickets!)

My feelings just after Anna was born were similar, though not quite as intense. The following is a story often seen in online Preemie communities I am a part of:

How Preemie Moms Are Chosen
(Adapted from Erma Bombeck)

Did you ever wonder how the mothers of premature babies are chosen?

Somehow, I visualize God hovering Earth, selecting his instruments for propagation with great care and deliberation. As he observes, he instructs his angels to take notes in a giant ledger.

“Armstrong, Beth, son. Patron Saint…give her Gerard. He’s used to profanity.”

Finally, he passes a name to an angel and smiles. “Give her a preemie.”

The angel is curious. “Why this one God? She’s so happy.” “Exactly,” smiles God. “Could I give a premature baby a mother who knows no laughter? That would be cruel.”

“But does she have the patience?” asks the angel.

“I don’t want her to have too much patience, or she’ll drown in a sea of self-pity and despair.

Once the shock and resentment wear off, she’ll handle it.

I watched her today. She has that sense of self and independence so rare and so necessary in a mother. You see, the child I am going to give her has a world of it’s own. She has to make it live in her world, and that’s not going to be easy.”

God smiles. “This one is perfect. She has just the right amount of selfishness. “

The angel gasps, “Selfishness! Is that a virtue?”

God nods. “If she can’t separate herself from the child occasionally, she will never survive. Yes, here is a woman whom I will bless with a child less than perfect.

She doesn’t know it yet, but she is to be envied.

She will never take for granted a spoken word. She will never consider a step ordinary.

When her child says “momma” for the first time, she will be witness to a miracle and know it.

I will permit her to see clear the things that I see – ignorance, cruelty, prejudice – and allow her to rise above them.

She will never be alone. I will be at her side every minute of every day of her life because she is doing my work as surely as she is here by my side.”

“But what about her Patron Saint?” asks the angel, his pen poised in the air. God smiles.

“A mirror will suffice.”

The first time I read it, I was (surprise!) angry. My religious beliefs are a post of their own, but I do not believe a God allowed Patricia to die, nor directed Anna's premature birth. However, what the story says about the necessary selfishness of Preemie moms definitely holds true for me. My selfishness allows me to ask for what I need, accept the help others offer, and realize that it is okay to feel sad about what Anna is facing while at the same time loving and appreciating her.

Lucky

Since Patricia's death some words have become more emotionally charged for me than others. Lucky is one of these words. I used to feel pretty lucky. No, I never won the lottery and hadn't lived a life completely void of hardship, but I recognized how enviable my life was. A good family, a husband who I enjoy spending time with, opportunities to receive an education and travel the world, a job that pays the bills and offers good benefits. These are good things.

Still, when someone, even my husband, refers to me or our family as lucky, it cuts me like a knife. I am not sure what it is about the word that causes me pain because all those things listed above, I still have those things, as well as a beautiful baby girl at home. But I no longer automatically think of myself as lucky. When I hear the word, I immediately think "Lucky would be if Patricia didn't die. Lucky would be if Anna wasn't born 14 weeks early or have brain bleeds. How can I or anyone think I'm lucky when these things did happen?"

I know the issue is grief-related because I am still grieving for Patricia and in some ways for Anna, though with her it is mostly fear for the future. I think I afraid of somehow forgetting Patricia's life and its effect on me as well as ignoring the challenges we  face with Anna. It is also hard when I watch Anna struggle to do something as simple as touch her favorite toy with her left hand only to get frustrated and begin crying. I feel sad and guilty, not lucky.

Despite what we have been through, I do feel joy. I could list out individual things that make me feel happy or thankful. I guess it's just the blanket idea of being lucky that I have difficulty with. Right now it is better if I tackle one thing at a time and take each day moment by moment. I believe the emotion surrounding the word will fade with time as will the immediate thoughts of all the reasons I feel distinctively unlucky, but only time will tell.

Pleasantries

When I moved to Copenhagen after graduation to be with my husband, I took a position at the study abroad institute I attended during my junior year. Part of my role was to conduct a session during orientation week about living and studying in Denmark. One of the cultural differences we discussed was the art of small talk. Unlike Americans, Danes do not typically engage in small talk. They often find Americans to be disingenuous based on these "fake" conversations. They do not want to be asked how they are by a person who obviously doesn't care about the response. Being from the south, the presumption that a quick conversation of "Hi, how are you?" "Fine, thanks, and you?" "Fine" was anything other than friendly and polite was strange, but at the time it just made for a funny cultural observation. I used to tell students that if they ask their new Danish friend "How are you?" they might hear a detailed description of his or her day up until that point including what was for breakfast and the state of traffic on the morning commute!

When Patricia died, I wanted to move back to Denmark to escape the small talk. I began to hate and dread the daily pleasantries I was expected to engage in with coworkers at the office, fellow students in my graduate program, and even strangers at the grocery store. Answering the question "How are you?" was a frequent topic of conversation among myself and other loss moms in the online support communities I am a part of. How is this question to be answered when your child is dead? Honestly? The majority of people posing this question were engaging in small talk and likely did not care to hear about the hell we were living. Even people who knew about Patricia asked this question in passing, likely without any thought. Suddenly what used to be a funny cultural difference became another source of pain and further isolation. Part of me felt, like many other loss moms, a duty to bring awareness and make the path easier for others who would unfortunately follow. So, I usually answered with something like "Things are tough right now." However, I found that this response often got me awkward stares and uncomfortable shifting until I followed it up with something upbeat like "but we're hanging in there." The relief was immediate and often evident on the face of the person who expected to hear "Fine, thanks, and you?"

You might wonder why I would make such a big deal out of this. After all, people are just being polite. But for a person who is grieving, saying that we are fine can feel like we are denying our pain, pain that comes from the love of the one we lost. Why should our society expect persons who are grieving to add to their pain for the sake of pleasantries? The answer is that we shouldn't. We should foster sensitivity, empathy, and understanding. In general, I think we should reevaluate our use of small talk. I am not advocating walking through life with our eyes on the ground, but I do wish people would discontinue the use of "How are you" unless they truly care and have the time to listen and respond. If not, a simple "Good morning/afternoon/night" or "Nice to see you" will do just fine.

Fine

Fine. One word with so many possible meanings which reveals such little information. I remember in my early teens my mother tried to ban the word from my vocabulary. She was tired of hearing "I'm fine," "It was fine," "She's fine."  She wanted details; she wanted to know more! Now, it seems the word I used to rely on causes me pain. What does it mean to be fine? Does it mean everything is good? That everything that should be is? Is it the opposite of bad? A step down from great? Who decides what fine is?

Yesterday I shared some cute photos of Anna we took in the pool over the weekend. A kind coworker who I know truly cares and means well said "See, I know she'll be just fine." The word stung. I found myself without a response. Does everyone know this but us and her doctors? I know it's hard for people to imagine that sometimes things don't work out like you hope. I have found that if a person hasn't experienced something or supported a close family member or friend through a similar experience, there is a tendency to resist the possibility of a less than favorable outcome.  Especially when babies are involved. Unfortunately, this tendency makes me feel very isolated, often. I understand that the persons assuring me Anna will be fine were not there when the doctors gave us heartbreaking news over and over again as Anna's brain injury progressed. I understand that they haven't poured over hours and hours of research that suggest what may lie ahead for us. I understand that they don't attend appointment after appointment, therapy session after therapy session, and lie awake at night wondering if that thing she did earlier was a sign of a greater problem. And we are just at the beginning of this journey!

It's not that I want to be a martyr. It's not that I want to wallow in self pity and negativity (not all the time at least.) I'm just tired of people telling me that they're sure Anna will be "fine." We already know that sometimes things are not fine. We have lost a child. We are not invincible. I want it acknowledged that our future is uncertain. I also want them to ooh and ahh over the beautiful, funny, amazing baby Anna is right now. A baby whose big smile and dimples bring tears to my eyes, and whose snuggles make me want to freeze one moment forever.

No, we don't know if Anna will be fine. We don't know anything! And neither does anyone else. I don't speak for all moms of babies with special needs, but right now the best thing you can do for me is marvel at the gorgeous baby I have now and tell me that she has the best parents and advocates she possibly could. Tell me that you know our hard work will help her reach her full potential, and that you wish good things for our future, which may or may not be fine!