Camping again!

Well, we are off to camping tomorrow. Going to Pescadero, which is kinda in the middle of nowhere, but just about one of the most beautiful places I have been. Love it! Usually I am very exciting about camping and things, but this time it has been difficult. I have had a rough couple of weeks mentally and am trying to push through it. I feel like it is coming to a head, which is probably why I am able to write about it, so hopefully that is the case.

Bubbas has been on the forefront of my mind as of late. I believe I have been in a blissful state of denial for a time now and slowly the facade is cracking. As I hear of other children's successes at younger ages, it is always hard to to smile and say "wonderful" because inside I feel like "why isn't my son doing that? why can't he do that? bubbas works his tooshie off in almost 10 hours of therapy a week and he still hasn't a clue or know how on how to sit himself up and he is 18 months old." This isn't to say I am not happy for other children's successes, that would be ridiculous to be mad at that, but don't want to lie and say it doesn't hurt. Now what I normally do at this point is say, Kim, you are so lucky, it could be so much worse. But, for right now I am going to put that aside and just say it...this sucks! I know it could be worse, but right now this is not so good.

Right now all his therapists reading this are saying, Kim, he is making great advances (granted at slower than snail speed, but advances none the less) and he is learning things. They are right for sure, but, for right now, I am going to take the emotional edge and not the logical one. I am only venting this to all of you so that if I seem a little kooky for awhile you will know why and not think anything otherwise of it :) I think things started hitting me because as always, they come in waves. Bubbas adaptive stroller will be coming in soon as well as his specialized hi-low chair (think really cool office chair with supports built in). Then in awhile a specialized walker will be coming. Now, I am very thankful for these things and am so glad he gets them, but it still does an emotional number on you knowing that there are not things that "normal" kids get. Disclaimer: In the special needs world, "normal" isn't the PC term, what I should use is "typically developing" but for right now using the word not being normal is helping me through this denial thing. We are also upping his therapy by a couple of sessions a week. Now, logically I am very excited for this because it means more help and more chances for Bubbas, but emotionally it is hard because it means my son needs more help.

I think as a society we put all these labels of developmental milestones and put a huge amount of pressure behind these. As parents, we want our children to succeed and feel like failures if for some reason our child misses one of these milestones by a few weeks or something. In fact, most times when you see someone the first thing they ask about your child is, "is so and so walking or crawling yet and etc. etc." I wish this wasn't the main focus of a child, instead I wish people focused on how beautiful/handsome a child is or different personality traits that make them unique and special.

Now, I don't get many questions yet from people about Bubbas because he does look "normal" but there have been a few that have been pretty entertaining that I will share with you. The first is when I was in Raleys and a woman stopped me and asked me when referring to his hearing aids..."Can your baby not hear very well?" I'm thinking, uh...probably so. But, I politely responded, "Yes, he is hearing impaired and has a sensioneuroal bilateral high frequency hearing loss" She was totally confused then, but luckily went on with her shopping quickly.

The next one is entertaining as well. Now, we all know Bubbas is working on his eye contact but it is hard for him and we are not even sure what he sees of faces yet. He has a diagnosis of cortical vision impairment which means that even though he does see things and will track them, we are not sure what he processes them as in his brain. It also labels him as legally blind. Kinda weird to think since he does see things and such. Again, just not sure what he is processing things as. But back to the subject at hand, it means in this case he won't look at random strangers. While I was shopping, in Kohls this time, a woman decided that it was her mission to get Bubbas to look at her. As we were waiting in line to pay for our stuff this woman in front of us kept trying to get his attention. She asked his name, which I told her, and then tried repetitively trying to get him to look at her. Why you ask? I have no freaking idea. She moved all over to get his attention and quite to her dismay not once did it happen. Now, I really didn't want to get into all of this stuff with her, but after awhile I just got really annoyed and wanted her to stop. So, I said, "You know, he probably isn't going to look at you he can't really." She responded, "That's ridiculous, all babies will look at you, you just don't know the right way." At that point it was all I could do not to take my fist with my wedding ring on it and smash it into her designer self. Pissed me off. Luckily, just as that thought entered my brain it was her turn to pay for her stuff :).

I will wrap it up now, gone on and vented for while. I feel better now. Many people ask me what they can do to help. Well, I will tell you for myself, as of right now, one great thing you can do is just be honest in your comments. I know not everything is all right with Bubbas and it is okay to say that :). It actually makes me feel good when people validate that of all crazy things. I many times think I make up all of this stuff that goes on with him, when in reality it is the truth. That is my crazy way of dealing with it and pretending that all of this is not true that goes on with him. Just yesterday I asked Josh, "Does Bubbas really have special needs or is that really not the case? Do all of these therapists come here and think, do we really need to be here for this child?" Josh has assured me that Bubbas does have special needs and the therapists wouldn't be here if there wasn't a reason to :). So, I got out of denial for at least a few hours :). I think a lot of it stems from not knowing the future. If he will snap out of this or not. Regardless, he will always have vision and hearing issues since those are permanent. Who knows if all the other stuff will just go away. That is what makes it so hard as parents with a no diagnosis. The key is not to look ahead, eventhough that is sooooo hard not to do. No one can give us any answers as to what this is or what the outcomes may be. The only thing we can do is be the best advocates for him that we can and teach him love and compassion. Do we know if he is going to walk, everyone is saying yes. Do we know if he is going to talk, still up in the air. Do we know what his neurologic blueprint looks like, no. But I will tell you something. That little boy is very smart. That is what makes this so frustrating. He is a firecraker under it all and all of these impairments lock him in a cage that I feel he is desperately trying to unlock. He is going to get there though and the only thing that will win out right now is patience. A beautiful word, a hard thing to do :).

The good news out of all of this craziness is that I got to spend the entire day with my beautiful daughter. We had so much fun! All we did was errands for the camping trip, but it had been awhile since it was just the two of us. I love that girl! She talked non stop while we were shopping and it was pretty cute! Bubbas got some good quality cuddle time/down time today with my mom which he was in need of too. After working hard all week, he deserved a little TLC without someone asking him to do antics. All in all a great day!

Toodles!