Tuesday, June 2, 2009

Being the "downer"

I feel like I'm always the "downer" these days. Here's a couple of examples of some recent conversations I've had about Ben:

Example 1
Background: A couple of weeks ago, we took the boys to this awesome playgroup. Every Wednesday morning, about 70 kids (with moms or dads or caregivers) show up at a local church gym for a really great time. The gym is set up with all different stations for the different ages (baby, toddler, pre-schooler). There are crafts, games, play-doh, puzzles, a train set, etc. This was our first time going.

Friend: How did you enjoy the Playgroup?
Me: It's fantastic for the boys, but for me absolutely exhausting. It's so hard carrying Ben around to all the different stages. There are so many kids, it's just not possible to let him army-crawl around. Plus, if it's a station where they have to stand up, I have to help support him so he doesn't fall. He just loved the trainset but it just about killed my back! Plus, he gets so frustrated that he can't just go and do what he wants.
Friend: Yeah, but when does he get his walker? That'll make it so much easier for you.
Me: Not really. This place is really too crowded plus I'd be scared that he'd get knocked over by another kid not paying attention. Plus, he's a long way from being competent in his walker.
Friend: Oh? I thought he did awesome in that video you posted a few weeks back.
Me: Well, that wasn't his walker. That was just the gait trainer. He's all harnessed in that and just has to move his legs to move. He's got a lot of work to do before he's ready for his walker.
Friend: Oh. (not sure what to say next)

Example 2
Background: Ben is working hard on learning to crawl on all fours. All day long he pulls up onto all fours so that he can reach up to something and then pull himself to kneel or stand. When doing this, he will "walk" his knees forward once he's holding on to the item in question (i.e. chair, crib rail, etc.) This morning he was trying to pull up to kneel on my mom's leg (she was sitting on the floor). Before he got his hands on her, she moved away a little bit. So he crawled on all fours to get to her. So she moved away a bit again. He continued to crawl. In the end, he probably crawled about 3 or 4 ft that way. So hopefully he's very close to crawling properly.

My mom: WOW! That's awesome Ben! I can't believe you're crawling! And you can now pull to stand too! Before you know it, you'll be cruising around furniture!
Me: Well, it'll probably be quite awhile before he'll be able to cruise around furniture.
My mom: Yeah, but it took him no time to learn to crawl like that.
Me: Well, he's been getting up on all fours for about 3 months now...so no, it wasn't "no time". I feel like he's been teasing me with it for ages now. That's how it always is with Ben. Things that take "normal" kids a week or a month to master, take Ben 3 to 6 to 9 months to master. And as for cruising around furniture, we'll be lucky if he can do that in a year's time.
My mom: Oh.

I am so sick of being the downer all the time. I feel like everyone else gets to be all excited and thrilled about Ben's progress and when they do, I crush them with the reality of the situation. But sometimes I just want to know what our reality is. I feel like so many of my friends and family try to minimize the crappiness (nice word eh?) of our situation. It's like they really can't handle knowing how bad it is for us. Or just how hard it is physically with Ben these days now that he's 20 months old and not able to walk. Sometimes I wonder why I insist on doing this. Is it at all helpful to them or me?

Anyone else feel this way?


  1. YES! I hear you.

    Alex is doing the exact same stuff as Ben, as far as army crawling and learning to 4 point crawl. He's 4 point crawled twice - and is often doing exactly what you describe with getting up on his knees to get to an item and "walking" on them. This has happened just in the last few weeks for Alex. But. Like you, I have learned to have no expectations for the next step, because it could be 2 weeks or 5 months until the next big thing happens.

    I've gotten to the point where I'm just a downer internally and don't even bother talking about it to anyone else... so they probably all think that I'm "handling" it well.... far from it.

    What I hate, is that I know people "mean well" but there is just no way for most of them to relate to how HARD this actually is for us.

  2. but do you think they are trying to minimize the crappiness or are truly excited? i bet it's the latter, especially with your mom. it IS amazing ben is pulling to stand. that is great progress. i know it's a slow road, and when you see it everyday, it's slower. but for people who don't see ben as much or just see his videos of standing, it's a big deal!

    i do know what you mean though, and i do the same thing at times, though i am trying hard to be more positive when talking about drake, esp in front of him, as i feel like he can understand now and i want him to hear encouraging messages from us, about him.

    and not to be a downer myself, but i do think it's a slower road from crawling to walking. now that drake is crawling i have been all excited to get him standing, walking and his therapists are like, it's going to seem like a plateau, as crawling to walking takes time. she reminded me how long lucy crawled before walking.. like 5 months! it will be longer for drake, she said. lots of balance and weight shifting are being sorted out. i think when you see one great progress, like crawling or pulling to stand you get greedy for the next trick.

    hang in there.

  3. people that aren't right "in it" with you just dont get it, try as they might. I have endlessly had to explain to people how bad Asher's grade 4 bleed was but because right now he looks fine, they just dont get it. I have also noticed that when I blog a somewhat negative post, my friends dont comment because it's too real and everyone wants to pretend my boys are going to be just fine. I think that as the mom, you are living the reality so you have no patience for the rose coloured glasses....well at least I don't!