In which Ben is now one…a long post

It just takes me so long to get around to blogging, what with everything else going on. 🙂 As I posted a few days ago, Ben is indeed now one, and after the flurry of activity, visitors and parties, he is doing alright. Our physical therapy has been switched to Monday afternoons now (from tuesdays). Therapy in the afternoon is an adventure. I have to deprive Ben of a morning nap, feed him lunch early, then put him down for a nap earlier than usual so that I can get him up at two thirty and get to school by three. This seems to work okay, but Monday was kind of a disaster. After talking to the OT (occupational therapist) for awhile on cups and weaning from the bottle, Ben was NOT into doing anything productive with his remaining time. He just sat and cried. I think some of it was tiredness, some was left over from the weekend, and some was just plain stubbornness. The upshot of this is that when the PT (Physical therapist) poked her head in to say hello, he was a mess. We had this PT in the fall, then our day got changed and we had a different PT. Both are excellent, and it didn’t matter too much to us. But Ben has changed so much since fall, and as I was telling her this, she was giving me a look like I had just taken some exotic psycotropic drug, because Ben was crying, limp, and generally NOT looking improved at all. It’s okay, next week will be better, right?
We spend time every day doing “therapy play” with Ben, and at this point, it is all just play to him. I want to keep it that way. I don’t want to have “therapy time” and “play time” at home. When he gets tired, we stop. Sometimes we just do a little bit all throughout the day, and that is fine. Sometimes, I feel like I’m spinning my wheels, and I’m completely overwhelmed because there is so much I need to do with him. Be careful of how he is positioned at all times. Regular cups, not sippy cups (more on this later). Rolling practice, sitting practice…why isn’t he sitting yet! Weight bearing on his arms. And his progress is slow but steady, but leaves me feeling unsatisfied, like I should be able to do something to help him more, and I’m not doing anything right. It’s very frustrating to have so many things to do, and feel like I’m not doing anything well at all. Like his failure to make progress is my fault. I know, I know….maybe I’m just being hard on myself. But it *is* hard.
Ben has been drinking from a cup since we started solid foods with him at six months, and he does a passable job. He is great with a sippy, but recent knowledge tells us sippy cups are the devil and I”m trying to get him better at a regular cup. Sucking on a sippy, apparently, is just like a bottle, and delays speech. Maybe that is not a big deal for some kids, but for Ben it is a super big deal because his speech is delayed already. So now it’s one more thing to worry about. He tries to suck from a regular cup, and I”m trying to work with him on not doing that, it’s actually fascinating…because you don’t think about what it’s like to teach someone to drink until you have to do it. We get lots of milk everywhere. The OT also suggested teaching him to use a straw, which seems like a good idea. There are lots of ways to do this, and we’ll try some of them. I want to start with a straw because at least then he can use his own cup without me worrying about him dumping milk all over his head, or worrying about the lurking evil of the sippy cup (which he is really very proficient at). It’s very overwhelming to think about all of this, and I’m worried that it’s all very confusing for people to read all about it. But this is our day…me thinking about what I ought to be doing with Ben, obsessing over it, worrying that I’m never doing enough.
In other news…
I get a lot of people saying “you must be so happy” about Ben turning one…and I AM. But again, I am so overwhelmed with feeling about it that sometimes it’s easier not to think about it. Thinking about the fact that he is still here means that I think about how much longer he will be here, and what will happen if he’s not, and I don’t like to go there. So I just stay in the now. I think more about day to day life with Ben than his heart problems. I think more about what we’re doing and what we will do today than the past year. And I don’t think a lot about what-if’s, or whys or hows. I don’t like to think about Ben making it, because it makes me remember how scared I was when I thought he wouldn’t. I guess the upshot of all of this is that I am realizing most of all, on this one year birthday marker, that I have really achieved what I set out to do (and I think Scott has too)…we are LIVING with Ben, and doing what he needs. That is very different than watching him, thinking about tomorrow or yesterday. So yeah, I am happy, I’m sick with happy…but I’m happy every day I’m with him…watching him try new things, eat new things, do new things. I’m even, in a sick way, happy when I have to get up at two thirty to deal with poop and spit up (as I was last night), because afterwards I get to cuddle him back to sleep, sit in a rocker and think about all the things I usually shove out of my mind, and smell his hair and listen to his breathing. You can’t put that into an answer to a question like “are you happy”, because there are no words to describe it. Everyone has something like that in their lives, I think…something for which there are no words. Ben is my “no words”.
And on a lighter note, there are birthday pictures if you

Ben and his "aunties"

Ben and his Aunt Anjy and Aunt Melanie

cake, round one

Cake at Casa De Randall on Wednesday night. Ben did not make this mess, and was NOT interested in getting his hands dirty. When I did so for him, he was kind of put out. He looks as if he might be rolling his eyes here, and I’ll bet he’s wondering who made this mess.

fingers to excavate frosting

Now the birthday party, that’s a different story. That little finger is excavating a frosting tunnel. He loved the frosting in the middle. 🙂

Let's just try a utensil

After an unsuccessful try with the fork, I turned the first layer off this cake, exposing the center frosting. Ben went at it with both hands…I don’t have a picture now, but there will be one up eventually.

Scott and I didn’t get our camera out once on Saturday..we were too busy! So we’re relying on the pictures of others. These came from my Dad, and we also have a roll of film to develop. More birthday pictures will crop up here in the coming weeks, I’m sure. 🙂


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3 Responses to “In which Ben is now one…a long post”

  1. purlewe Says:

    I just want to tell you again how much I love you and your family. And what a great time I had.. seeing more pictures only makes me want to visit RIGHT.NOW.

    Live each day to its fullest m’dear. And I see you doing that every day. It makes my heart sing.

  2. Anonymous Says:

    Sippy cup

    Kim, I just had to chime in when I read your account of how you are trying to get Ben to drink from a cup, not a sippy cup. JJ couldn’t drink from a cup until he was 15 months old – he would choke. Neurologically, he simply wasn’t ready for the task. James Patrick couldn’t drink from a sippy cup until he was about the same age as JJ. JJ was an early talker while James was a very late talker. Did the sippy cup have anything to do with either of them speaking??? I don’t think so. The same neurological deficits that prevented JJ from drinking and James Patrick from talking couldn’t have been corrected by using a regular cup. The fact is….kids need to develop the right neurophysiology in order to drink, talk and walk. Give Ben a break and give him back his sippy cup – he is well ahead of JJ and James Patrick in that arena, and you are frustrating yourself for no reason. Drinking from a straw is a hard task – although it might be desireable, it may be too difficulty for Ben to accomplish at this time. He is an adorable kid who will develop at his own pace when he is ready. There is nothing you can do to accelerate his ability to function or prevent it from occurring.

    I think of you often.
    Mary Ann

  3. balenuta Says:

    It is absolutely adorable! Happy birthday, lots of health to Ben, and all the happiness and joy in the world to all! HAPPY BIRTHDAY!!!!


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