Thursday, July 23, 2009

Not always coming up roses

Looking back at a lot of (or most of) my posts, I notice that I'm always writing about how awesome things are. Which isn't really like me (if you know me, you know what I mean). I don't want to come off as fake or like life is oh so perfect. It's not. It's hard work. I just don't think it's fair to only go on and on about how great things are. Because while things are great for the most part, there are some not so great things going on around here as well. I want to be honest with this blog and also help others out who may be in a similar situation. And if I am not being 100% honest in how our life is dealing with our sons condition then how is that helping anyone?

I have my days where things are pretty great and things run smoothly. And then--there are days where balling myself up into the fetal position and rocking back and forth in the nearest corner of the room sounds like heaven.

This morning was a rough one. I think Kale is finally really teething. As in, teeth should actually be coming in. He's 10 months old and I feel like the two front bottom teeth have been just sitting there teasing us--but now? They mean business. And Kale isn't having it.

Not only is the teething an issue right now, but so is feeding Kale solids. I have little cues I give him to let him know when I have the spoon ready for him--I rub his cheek with the pinky finger that's on the hand that is holding the spoon. If that makes sense. I also give him verbal cues. And sometimes it's a messy affair, but babies are messy anyway, so no biggie. Well now Kale puts his fingers and hands into his mouth as soon as I move the spoon away. Then he rubs them all around and on his eyelids--which are still stitched closed. Which in turn sucks. Because the last thing I need is for him to get some sort of infection in his eye. So the entire time I'm feeding him, I'm busy moving his hands away, he's busy fighting me, I'm busy wiping his hands and his eyes which just makes him mad, he starts to fuss and cry and then he refuses to eat anymore.

Needless to say, I'm really starting to dread breakfast, lunch and dinner time with him.

This morning because he was so fussy due to what I'm assuming was the teething, I couldn't even feed him breakfast until almost eleven o'clock! He usually eats at eight. I was so stressed, he was so stressed and soon we were both in tears. Ugh. I'm such a wimp.

A couple of weeks ago, a physical therapist came by with Kale's Early Steps Intervention teacher to check on how things are going with him. The last time she saw him was December 1st so she had a lot to catch up on with him. She showed me a few transitional steps for him to work on--from crawling position to sitting, sitting to crawling position--that sort of thing. The visit was good, though. She said he looked good and she thought that he had made a lot of progress over the past six months and she just wanted us to make sure we keep encouraging him to crawl, stand and walk and to be able to move from each position on his own.

He's been sitting up so great for long periods of time, too. Until recently. I am so scared he's regressing or is going to. Usually it was no big deal for him to let you sit him down on the floor. He'd be content playing with whatever you gave him and just sit there. Now if I try to sit him down, he'll refuse to bend his knees or go straight to lying on his back. It's kind of frustrating. But I keep messing with him until he does it. Sometimes he gets really mad, but I know he needs to do it and so I work with him until he does it. Other times, he's fine.

I just get so scared that all this progress he's made will all of a sudden come to a stop. I doubt that will happen, but I still have that fear. I'm the one who is home with him all the time so it's up to me to make sure that all of these goals are being met with him. And yet, he's still not crawling. And while I know that it's very common among blind babies and blind children to crawl and walk late, there are still people in my life who tend to make me feel like it's my fault. Like I'm not doing enough for him. Or I'm not doing my job. And no matter what information I give those people to back it up, it just doesn't matter. I'm still the one at fault.

Anyway, I guess I just wanted to share how some things we're dealing with in our everyday life are kind of stressful. It's not all fluffy clouds and butterflies. Sometimes it's rain clouds and mosquitoes and not an umbrella or citronella candle in sight.


Lara said...

We all have those days, Kimi. You're not alone. I guess we both blog as a way of getting it all out - I love Erma Bombeck's saying, "If you can't make it better, you can laugh at it."

I'll do some brainstorming (not too much, don't want to draw flies) about the feeding thing. I wonder if you could get him to wear goggles or if that would bother his senses too much.

Hang in there, girl. . .

Catherine said...

Hi Kimi. Long time follower, first time commenter....

Children will progress and then regress. It's normal. I think the same thing goes for parents. My advice is don't be afraid. Children are not 'change agents' so they do something, like walking or talking, then decide they don't like it, and refuse to do it again (for a long time!) Going through the whole 'child learning to eat' phase is like nailing jello to a tree. Eventually, you'll luck out. Keep on keeping on.

onemuse said...

GAH How frustrating--I feel frustrated just reading all that the way you describe it!

Feeding issues are the worst--I hated messy feeding times and you have the added stress of making sure his eyes stay clean. (Good idea about the goggles or sunglasses, Lara.)

ry not to worry too much about his progress on the movement, etc. (Easy for me to say, right?) I remember the girls would learn to do things and then forget them when the newness wore off and I'd get worried, too.

Phew--hang in there, girl. ((Hugs.)))

Blair said...

I've read this post a couple of times and thought I should comment. I just wanted to tell you that I really appreciate your honesty. You express yourself very eloquently and I think it's great that you put it all out there. You are a great mom and the best mom for Maile and Kale. I know you are doing a wonderful job with both of them.

Monika said...

You're right, we really DO need to get together and chat sometime. It was a relief to read this. NOT because I'm glad you're feeling this way at all! But because I'm reading glimpses of my own feelings in it, and it's good to know I'm not alone. I know Cai is going to be behind in so many of the 1st year "milestones" and I already feeling guilty about that. I wonder if I'm going to baby her too much, be too protective, and keep her even more behind. It goes on and on. But like Blair, I really appreciate your honesty. (((hugs)))