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.

Monday, July 20, 2009

A heart bigger than this world

I heard Maile in her room doing a combination of crying and talking when she was supposed to be going to sleep. I walked in there to see her sitting on the edge of her bed hugging her knees and tears streaming down her face. I asked her what was wrong, expecting her to tell me something silly like she does sometimes when she's not ready for bed just yet.

Instead? This is what she said:

"I was praying to God for Kale to be okay. I just love him so much."

I, of course, started bawling right along with her.

I told her that he's just fine and will continue to be fine. Mike and I try to explain to her as often as possible that just because he cannot see anything that he's not missing out on anything. It's so hard when they're that young--they just cannot comprehend why things are the way they are. She still asks from time to time if Kale will see when he's older, when he's a grown-up. And then other times she'll say matter-of-factly that he is blind and always will be. I don't know that she fully understand what that means though. She's asked me a few times why God made Kale blind--and I honestly never know what to say. I have so many issues with religion and faith--the last person in the world that should be explaining these kinds of things is me. But I did my best as I will always try to do and told her that we're very lucky to have been chosen to be Kale's family. That out of all the other families in the world, someone/God picked us. We are the perfect family for him.

She seemed to like that.

I kinda do, too.

Sunday, July 5, 2009

4th of July, 2009

What an awesome day yesterday was!

First we took a trip to Johnson Beach which is only about ten minutes away from us. Some friends of ours invited us out there to cookout and just enjoy the day--so that's what we did. It was crowded, but not as bad as I expected it to be. Mike and Maile went out to the water with their boogie boards and Kale and I sat under an umbrella soaking up the shade and light breezes that came our way.

Mike and Maile eventually made their way back and it was evident that Maile wasn't happy. The waves in the water scared her a bit and she was D-O-N-E. And super grumpy. I think the heat was just getting to her. She usually loves the beach and never wants to leave but after coming out of the water all she wanted to do was go home.

Check out Miss Grumpy Pants! She didn't even want to look at the camera which is not like her at all!

Oh, wait! I was wrong. Grumpy or not--she is such a beautiful girl.

So Mike and I packed the kids up and he dropped us off at home and Mike went back to the beach to hang out with his friends a little bit longer. Which was fine--It gave me time to make some buffalo chicken dip and some Angel Lush Cake. Seriously--if you haven't had this or made it--you need to. Assuming you like pineapple. Oh.My.God. It's so good! And sooo easy to make!

Our late afternoon/evening plans included hanging out at the in-laws house (my parents were out of town doing their own thing). I invited my friend and her twin daughters and we all just had a great time! Maile had her friends to play with and Mike's friends and family were all there, too. Lots of yummy food and lots of laughs! What more of a good time does one need?

Once the sun started to set, we went outside and lit fireworks. Maile held her first sparkler and then immediately (and fearfully) dropped it to the ground.

After a little while of watching the twins hold theirs with no problems, she tried it again: Success!

And of course, Kale had a great time, too!

Hope every one of you enjoyed your 4th of July--either with friends, family or just doing whatever makes you happy!

Wednesday, July 1, 2009

Floatie free! Sorta

Today was Maile's last day of swimming lessons! She started three weeks ago, cried the entire time during the first class. But by the end of the first week she was claiming she wished she could live at the pool. Mike had been taking her to the classes while I stayed here at home with Kale. Apparently the parents are not allowed to hang out by the pool, but instead are on some upper level and have a tiny window to look through--assuming other parents give you some room to do so. But today was the last day and all the parents were allowed to be by the pool and take pictures.

Kale and I went today so we could see all that Maile had learned. Her big thing to do is to go under water. She's so proud of herself and how she's able to hold her breath. Before the class was let out, the teachers put the kids in life jackets and floated them around in an inflatable boat--Maile seemed to like that a lot.

I'm super proud of her but scared at the same time. We will probably put her into another swimming class the next level up sometime in the near future, though. She's still a little nervous about swimming, and still needed some assistance from the teacher. Anyway, I'm super proud of her and how she got over her initial fear of swimming without floaties. She seems to want to continue to learn more and I'm all about supporting whatever she wants to do.

Interesting little thing happened today while waiting for Maile's class to begin. There was this other mother there with her kid who was in Maile's class who looked a little familiar. I thought I knew who she was for sure, but then decided she wasn't who I thought she was. As we were going into Maile's class she was behind me and said to me "You look familiar" and then said she wasn't sure if it was just from the swimming class (it wasn't--I hadn't been there before) or from somewhere else. Then she said she works at Baptist Hospital---and then I knew I was right about who she was. I then asked "Audiology?" and she said yes. She was the audiologist who I wanted to strangle!!! She was the one who was bound and determined to send us all the way to Shands Hospital in Gainesville for some test that they may or may not have even done on Kale! She was the one who was trying to convince us that Kale had hearing loss--the one who after I went to a different ENT doctor than the one she recommended, she still tried to intervene and was telling the new audiologist we were using that Kale needed to go to Shands! She caused us so much unnecessary stress for three loooong months before we sought out anyone else and then was still butting in. She's the one who wasn't confident in her testing and was trying to pass us off onto someone else--but once we got a second opinion locally she wasn't having it. Thankfully Dr. Chicola and his audiologist, Kina, listened to us and discovered that Kale didn't have hearing loss at all but just needed tubes in his ears.

Anyway. I was good and didn't scream at her or anything, but I was very cold with her and just pointed to Kale who I was holding at that moment and said, "Yeah, Kale." She knew right away who we were and said, "Oh, how is he? You used Kina and Dr. Chicola, didn't you?" and I told her yes, and that everything was great--that all he needed was tubes in his ears and he's been fine ever since. He actually has a follow up with Dr. Chicola this coming Monday--kinda funny how we ran into her of all people. I'm very proud of myself for not giving her a piece of my mind, but I do think she got the message that I am not her biggest fan.