Tuesday, May 22, 2007


I was at a local park the other day with my younger daughter, just around lunch time. She had been stuck in her car seat for most of the morning, running errands and napping. As she is on the verge of walking, she loves any and every opportunity to move around (what typical almost one year old doesn't?). I was not used to seeing such a large crowd, since we typically go early in the morning. Anyway, there were babies everywhere, from about 8 months to 3 or 4 years. A couple of moms were using the bucket swings to feed their younger children, and there was a large blanket laid out next to a bench, with lots of snacks spread out for the kids. Apparently, it was some pre-arranged play group. And, as I observed the scene, I felt this sense of longing creep into me.

I had no desire, really, to talk to any of these women. Their lives seem so different from mine. I overheard a conversation about taking toddlers to see a show, and that seemed so foreign to me. My son's days are filled with preschool and therapies. My daughter's schedule revolves around my son's schedule. And my life revolves around the two of them. I try to provide my kids, my son especially, with as many typical experiences as possible. But, usually, these experiences need to be planned well in advance; but, there are only so many "free" days.

I longed for the innocence of motherhood without the trauma, without the loss, without the challenges of infertility. Of course, I know nothing about these women, nothing about their lives or what challenges they may have. I know only my reality....and that is far too much. I know that getting pregnant takes more than just talking about it. I know that getting pregnant is no guarantee that you'll stay pregnant, nor that you will deliver a healthy, full term baby. I know that babies die. I know that I can never know the future.

Tuesday, May 15, 2007


Max started feeding therapy at Childrens Hospital Los Angeles. We've gone for two sessions now, and each time, we found ourselves making a stop at the McDonalds which located on the first floor. Therapy starts at 2, but we're usually there early. This way, Max can use his wheelchair to get himself around and, like most 3.5 year olds, he likes to wander and take his time. He's quite social, so really enjoys wheeling himself up to complete strangers and saying "Hi" with a sweet voice and a wave. Anyway, we usually have at least a half hour before our session, so we typically make a stop at McDs so that I can get some coffee and a snack for my younger daughter, who by then is really hungry. I get the same order each time: 6 piece nuggets, fruit & walnut snack, and a drink. Well, it turns out my son really likes apples....or, I should say, he likes the idea of apples. He can't quite eat them yet, but he loves to pretend to bite down and chew the crisp pieces. (His feeding therapist suggested we put the apples in some organza and allow him to have the experience of biting and chewing, without the risk of choking on the pieces.)

Well, all this is just background for what happened today. I picked Max up from school, and as I was settling into the driver's seat, I hear him calling me from the back. The conversation went something like this:

Max: "Uhm-ma (Korean for "mommy"), McDonalds!"

Me: "McDonalds? Why do you want to go to McDonalds?"

Max: "Want to get some apples to eat."

Me: "Apples? You want apples from McDonalds?"

Max: "Go to McDonalds. Get some apples to eat."

I couldn't believe my ears! I had just had a full conversation with my son, without coaxing, without prompting, and without initiating with questions of my own. This is the first time...for both of us!

So, of course, after that, we had to stop at McDonalds. Way to go, Max!

Friday, May 4, 2007


I am by nature an obsessive compulsive person. I admit that, in general, these tendencies have served me well. And, with my son's current medical and physical challenges, once again these obsessive compulsive tendencies have helped me to meet his many needs. For example, Max is on a very regimented medication and feeding schedule. The medications are time sensitive, and his feedings are rate/volume dependent as he continues to rely on tube feedings for nourishment. I keep a daily log that includes time, meds, feedings, diapers and any observations that might be relevant to how he's tolerating his feedings. I have notebooks full of daily entries that date back to the day of his discharge from the NICU, over 3 years ago! Give me a date, and I can tell you how much he "ate", how many diapers he had, when he slept and whether or not he was "sick". And, on more than one occasion, I have referred to these detailed entries when providing medical history for my son, especially with GI related issues.

But, there is a down side to this obsessiveness. I am exhausted. I am exhausted physically, emotionally, mentally. I feel as if I can't decrease my level of vigilance because, if I do, I might miss something...even though I don't know what that something is. When Max coughs, do I dismiss it as "just a cough" or is it a symptom of something more troublesome, something that could lead to another hospitalization, or take us down a path of no return? It's very different with my daughter, who was born full term and has, to date, been extremely healthy. I don't worry when she has a cough or a runny nose. I also don't worry about how much she eats, or what she eats. I trust her. I trust that she'll eat when she's hungry, drink when she's thirsty, and her immune system is strong enough to fight off whatever may come her way.

Ultimately, my obsessiveness is an attempt to have some control over the uncontrollable. Perhaps that is why I'm so tired...because I know that no matter how vigilant I am, I can not guarantee that my son will not get sick, that he won't have to struggle, that he won't continue to face the challenges that are the consequence of his extreme prematurity.