June 2011

  • Therapy and school

    This morning a physical therapist came to the apartment to evaluate Namine. But this was no ordinary PT – if there is such a thing – this was a PT from the school district. She was there to examine Namine in order to determine what kind of therapy she might need when she starts attending school. Things like her preferred method of locomotion, level of toilet training, gross and fine motor skills, listening skills, and cognitive ability.

  • What could never be

    Sometimes we find ourselves pining for something lost, perhaps for something that never even was. It sneaks up on us, Jessica and I, and suddenly we realize that Namine is almost three years old. She is moving, she talking, she is more independent every day. Where is our little baby girl? She’s still small – she’ll always be small – but she’s not small anymore. She doesn’t have a baby face anymore; she has a grown up face, so it seems to us. Can’t we have our baby back?

  • Father’s Day picnic

    For Father’s Day, Jessica, Namine, and I went over to my mom’s house.

  • Looking the other way

    I was going to post a bunch of pictures today and talk about my wonderful Father’s Day with my family, but that’s getting put on hold for a day. I might get around to it tonight even, but I want to talk about something more pressing on my mind than a good ol’ time. I’m going to talk about something uncomfortable. If you get offended, I’m sorry, but it must be said. I only ask that if you keep on reading, hear me out and give it some thought.

  • Dear Ed

    Father’s Day can be a wonderful thing, but it can also be a bittersweet thing if you’ve lost your father. I haven’t, but my wife Jessica has. It’s important to remember those who may now be gone, but have helped shape us into who we are. I am glad that I had the opportunity to become your son-in-law and friend, Ed Tarver. We miss you.

  • Polish Fest tomorrow

    Tomorrow Jessica and I are going to be helping out our friend and neighbor Leah with the kids’ area at Polish Fest, down at the Summerfest grounds. We’ll be helping to set up the games and prizes, and assisting with running the games, crafts, and activities. This will be our second year helping out, and we’re really looking forward to it because we had a blast last year.

  • A long day of clinics

    As I’ve mentioned before, long clinic-filled days are nothing new to us. Nothing new, no, but that shouldn’t suggest that we enjoy them. Yesterday morning was unenjoyable, but it was not pointless; far from it. It was a great opportunity to catch up with both doctors who’ve seen Namine before (but haven’t seen her recently) and doctors whom we’ve never yet seen. And all things considered, we came away with only good news. Plus one slightly crabby child, but I think her level of crabbiness was in direct proportion to her proximity to the clinic building.

  • Clinic tomorrow

    As if last week was not bad enough with all its clinic visits, we have one more this week, midst all of Namine’s resumed therapy sessions. But while last week’s clinics were mere one- to two-hour deals, tomorrow’s is promised to be at least four hours long. A four-hour clinic visit is nothing new to us, having been through the worst of cramming ENT, pulmonary, cardiology, and GI into a single visit (due to Namine being trached and vented, tethered to a single five-hour oxygen tank). But neither would we care to repeat it; tomorrow, though, is a very important day.

  • The best reason

    One of my favorite phrases since becoming a special needs parent (though we don’t think of ourselves like that; we’re just parents taking care of our baby girl) is “I’m not an expert, but I play one in real life.” I’m not sure where I picked it up. Regardless, I love this saying because for me, it underlines the fact that we’re not experts. We didn’t go to school for this; we didn’t train for this; we weren’t prepared for this. But we do it anyway. And we do it for the best of reasons: love.

  • ENT clinic today

    What started as a routine clinic appointment ended, unfortunately, in setting yet another surgery appointment. But as glib and sarcastic as we sometimes get about surgery, we do recognize it as a necessary thing. And it is necessary once again. Next month, Namine has to have her right ear tube removed.

  • Recurring fever

    Yesterday afternoon, Namine had a low-grade fever. She hadn’t been feeling the greatest during the day, and we thought perhaps she was getting sick. She’s fairly prone to ear infections, so that’s usually at the top of the list when we suspect illness. I checked her temp this morning, and it was fine. Tonight, however, her temp was back up to 99. Sigh. I don’t know. Part of the problem could be that Namine gets so warm. We call her our little hotbox, she gets so warm. Perhaps that’s part of it, perhaps not.

  • Only a dream

    I had a nightmare a couple nights ago. In it I dreamt that Namine was dead, and I alone was left with the dreadful task of carrying her down the aisle, one last time, to say goodbye. When I woke, there was that single cold moment when I thought the waking world was the same as the dream world. No relief has ever been so sweet as this morning’s realization that Namine’s death was nothing but fiction, that she was alive, sweet, warm, and still dreaming whatever dreams her little mind concocts.