Summer Adventures

We were lucky to bring Anna home just as RSV season was ending. (For those unfamiliar with RSV, this link provides a good overview). While it is important we keep Anna away from anyone exhibiting symptoms of illness, it is also important that we do as much as we can to provide stimulation for her brain! Here are some of the adventures we have been on this summer:

First outing at the Botanical Gardens

Picking out plants at the garden center

First encounter with Texas longhorns on a walk around the neighborhood

Sleeping at the Museum of Science and History

Woke up in time to marvel at the wall of bubbles!

Learning about some amazing women at the National Cowgirl Museum

Keeping an eye out for sharks at the Sea Life Aquarium

Staring down a freshwater fish

Keep checking back to see Anna's August adventures!

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!

Statistics

I've always been very good at statistics. I aced the course in high school, undergrad, and graduate school. What I didn't fully grasp while learning about probability and significance is this: Statistics mean nothing to the individual.

According to the March of Dimes Foundation, stillbirth occurs in about 1 of 160 pregnancies. Common causes include placental problems, infections, and umbilical cord accidents. About half the time, the cause is unknown. Such is the case with our Patricia. We consented to an autopsy but no cause of death could be found. We lost.

Also according to the March of Dimes Foundation, 1 in 8 babies is born prematurely. Common causes include infection, bleeding, and fetal stress. Anna's birth was actually due to a condition called incompetent cervix, where a woman unknowingly begins dilating and eventually goes into labor. According to the American Pregnancy Association, this condition happens in about 1 out of 100 pregnancies. Risk factors include previous surgery on the cervix, damage during a difficult birth, and a malformed cervix or uterus from a birth defect. None of these risk factors apply to me. We lost.

Though studies on micro-preemie survivor rates differ, we knew the chances were up to 85% that Anna would survive birth at 26 weeks. We won!

Although neonatologists are understandably hesitant to make any kind of predictions about a micro-preemie like Anna, she started out following the normal course for a baby her age. When Anna was 5 days old, our "luck" ran out. Micro-preemies like Anna are at high risk for intraventricular hemorrhaging, or bleeding in the brain. According to a 2003 study published in Pediatrics, the official journal of the American Academy of Pediatrics, approximately 5% of infants have bleeds as severe as Anna's, and only 5% of all bleeds happen as late as hers did. We lost.

The same 2003 study found the mortality rate of infants with severe bleeds to be somewhere around 75%. We won!

A 2008 study published in Pediatrics found that approximately one third of infants with bleeds develop hydrocephalus, or a buildup of fluid in the brain. We lost. Of these infants, 15% require shunts to permanently re-route fluid. We lost.

As Anna grows and develops, we cannot escape statistics. A 2005 study in Pediatrics found that 60% of children in the study with severe bleeds had cerebral palsy, 70% had mental retardation, and 92% required special services. In addition, the Hydrocephalus Association reports that an estimated 50% of shunts fail within two years and 25% become infected and require revisions. With our ability to defy odds, Anna's future is wide open!

To sum up: Statistics mean nothing to the individual. They neither frighten me nor offer me hope. If someone comes at me with statistics, I am likely to laugh or cry, depending on my state of mind. In a way, this is somewhat freeing as it allows me to have fewer expectations.  Research is necessary and important and will surely guide our treatment plan, but we will move forward on this journey and focus on Anna as an individual and our family as unique.