Still Grieving

When Liam was born, I was a fairly isolated and overwhelmed new mom. Liam's pediatrician noticed and recommended that I attend a Moms' group on Melrose in downtown Los Angeles. The group was comprised of a half dozen other moms, all of whom had given birth to their little ones within about 6 weeks of Liam's birthday. The group was run by a counselor/nurse who let us talk about our birth experiences, gave us tips on nursing, attachment, sleeping, and infant development, and taught us to sing and dance with our kids. I found it so valuable that most weeks I would drive an hour through traffic from Duarte with an oft-crying Liam to attend these groups. Ever since, in the back of my mind, I've thought that someday I might put something like that together for new moms in my area. And now, as a psychologist at NNH, I have a pretty good setup for embarking on this specialty when I'm ready.

Now, I don't profess to be ready for this quite yet, but I sure do need some CEU's (continuing education units to maintain my license to practice psychology) and I do love Seattle and it just so happened that some of the leading professionals in the field of infant mental health were putting on a conference in Seattle last week....so I signed up.

I was excited to go. I wasn't nervous. I flew to Seattle, hung out with my brother and an old friend, stayed in a fancy hotel. The morning of the conference, I enjoyed the continental breakfast and rubbed elbows with an OT from California. But to my surprise, we were about 3 slides in to the presentation and I was in tears. Like...uncontrollable tears. The renowned speaker was showing pictures of infants, discussing how to recognize when they are content, overwhelmed, etc. The discontent babies were upset like typical babies get upset: they were too tired or too cold or needed to poop. I realized in that moment that I could force myself to stay in that chair and have an emotional wrestling match for two days or I could bag it and try it again in a couple of years.  So, bag it I did. I went to my room and cried for awhile. Then I went shopping and hung out with my brother some more and went home early.

I was kind of embarrassed and ashamed about the whole thing. Some people I know seemed to think, "Well, of course that would upset you!" And I felt deeply disappointed. I really wanted to be ready to sit through the conference. Apparently I don't have superhuman powers of psychological compartmentalization. I'd been talking with a friend who had reminded me that grief can be "tricky" and that it can sneak up on you in ways you don't expect. That evening I came across this quote by C.S. Lewis:

"Grief is like a long valley, a winding valley where any bend may reveal a totally new landscape---Sometimes the surprise is the opposite one you are presented with, exactly the same sort of country you thought you had left behind miles ago. That is when you wonder whether the valley isn't a circular trench. But it isn't. There are partial recurrences, but the sequence doesn't repeat."

I found my heart sinking when I watched babies being toted around the airport. I don't like feeling that way. Having just finished The Still Point in a Turning World I thought, "maybe I should look for a new book. Maybe some other parent out there has written something I can relate to. Maybe there is some sort of special needs parenting book out there." My initial search on Amazon turned up the following titles (I'm not kidding): Shut Up About Your Perfect Kid, The Elephant in the Playroom, and My Baby Rides the Short Bus. Seriously? I wanted to throw up a little. So, then I sought out the online message boards. There are Stop CMV, CMV Mommies, CMV Advocacy Group, and CMV Stole My Child (My personal favorite--just kidding). Sigh. I didn't like those either. I started reading and found that it felt too taxing to learn about other moms and their kids who are functioning a) better than or b) worse than Keira. I know. Doesn't leave much, does it? If I'm turned off by all of these options, what kind of support to I really want? Do I want people to feel sorry for me? Do I just want to know the future? In the end, at least this time, I decided to take a deep breath and just keep putting one foot in front of the other.

Last week was insane. Keira was scheduled for 8, E-I-G-H-T appointments! It seems there is nary a body part or function whose corresponding specialty physician does not want to try to fix. I often leave appointments with another appointment or two. The sum of last week was a blood draw, a prescription for foot braces (in addition to her hip brace), a referral to a dental specialist, and a surgery date. This is K flirting with Daddy while waiting to see the surgeon.

The surgery, that I mentioned before, is sounding like a bigger deal than we originally thought. She's getting the fundoplication/nissen, a button (instead of the long tube out of her belly), ear tubes (her 3rd set), and an adenoidectomy. Of course, the nissen is the biggest deal. They actually take part of the stomach, wrap it around the esophagus, and suture it nearly closed to prevent food from coming back up. They are not real clear on exactly how/why it works and there are some scary sounding possible side effects. The surgery is expected to last about 3 hours and is scheduled for Friday, the 13th. Keira will be in the ICU on a respirator for about a day following the surgery. She's expected to have to stay in the hospital for 7-10 days. This is because they (I) have to find the delicate balance between getting Keira to eat as much food as possible without retching. Retching is basically the word they use for "trying to throw up when she can't throw up anymore." The retching could rip out the sutures.

My hope is that the surgery will make K more comfortable and help her keep more food down. That keeping more food down will help her gain more weight. That gaining weight will give her more energy to progress and that maybe, just maybe, we'll see more purposeful movement, more communication, etc.

What I worry about most when it comes to a hospital stay for Keira is the boys. Liam and Ronin are awesome. They don't want sissy to be in the hospital, but look forward to getting to hang out with Grandma Janie and others. I hate that they get my attention last, but I'm pretty sure it's more of a  problem to me than it is to them. In fact, I should probably wrap this up now so that I can feed them some dinner...

This is K today. This past few days, we've given up on feeding her orally altogether. We're tube feeding her day and night because she had lost a few ounces again and, ironically, they are concerned about doing the surgery if she doesn't weigh enough.

Please keep us in your prayers. I'll keep you posted about how K is doing after surgery.