Tuesday, July 28, 2009

Glass half full........

I am typically a glass half full kind of girl. Every once and while though, I will let our situation get to me. Yes, the other day I was feeling sorry for myself.

Pity Party …. Table for one please!

What got me down you ask….. Well, since you asked I guess I will share. I MISS family vacations. I miss going with my entire family and having a blast some where new and exciting. When Collin was little we traveled to New York City, Philadelphia, the Pocono’s, and we would go to Texas at least once a year to see my family. Since Collin’s illness has progressed our family vacations have been limited to traveling to Maryland. Oh, that sounds like fun you say…. Well, it would be if we were not traveling out there just to go to the hospital to see Collin’s wonderful team of doctors. We do manage to sneak in some time in D.C while we are there but trust me it isn’t very “Collin” friendly.

The other day I was completely feeling sorry for myself wanting so desperately to go see family, go camping, goodness do anything! As Collin’s illness has progressed our options have become very limited. Even staying the night at my mother’s house would throw him into seizures. When my mom and sisters where in town visiting last month, I decided that it would be fun to spend the last night at the hotel with them. The hotel suite was huge. So, I was going to take one of the bedrooms for Collin and I to sleep in. This way I could put him to bed then stay up late playing games and visiting with these wonderful ladies. Not so much….. Collin started having seizures and vomiting. Finally I decided just to go home and give up on the idea of a fun girls night. As soon as we got home Collin calmed down and his seizures stopped. Collin can not have his routine of scheduled medications, environment, or bed time routine change in the slightest way… OR ELSE. It has been a long time since I have been to see my dad or siblings in their homes. They are very good about coming out here to see us and are very understanding of our situation. However, I still miss the fun of planning a family vacation, the excitement, and anticipation.

Then I had someone tell me a story about a woman who had beaten cancer only to have it return again. While she was fighting it this last time they found out that her son also had cancer. While she was in the hospital having surgery to repair problems from the previous surgery her son passed away. She was not even able to attend her own sweet little boys funeral. It was very recent and very heart breaking to hear. This little boy goes to the same hospital as Collin. I feel as though I have a bond with this family if only for that reason. This poor mother…my heart goes out to her, breaks for her, and prays for their family.

With all of this in mind when I woke up the next day I CHOSE to have a glass half full attitude because at the end of the day that is all that I can control. I can not control this beast that is TTD. So, instead of feeling sorry for myself and the things that we can not do I CHOSE to be grateful for the things that we can do together as a family.

If you change the way you look at things,
The things you look at change.

Here are some pictures of our lovely stay-cation.







4 comments:

Mandy said...

Oh wow are we on the same wave length or what?? Last week we did a overnighter staycation. We really want to go to Disneyland again, we haven't been since the boys were 3. But Caleb has gotten increasingly tougher to take out. He is AMAZINGLY strong, that I am no longer able to pick him up, and even if I could he fights. We cannot reason with him and tell him we are going to go on rides, he doesn't understand that. He is very loud, very strong and will scream and cry and drop to the ground when I try to get him to walk somewhere. When we try to get him out of the car he tries to kick me. He is ok once we get to the hotel and he can have his DVD player and do what he wants, but that isn't what vacation is all about. It is about going and doing things. Tyler and I feel so bad for Holden because we feel he is missing out on a lot of vacations and things like that. Tyler does an awesome job of always doing something fun with him on saturdays but it just isn't the same. Tyler had a bike race a couple weeks ago in central Utah, and I didn't go this year, not because of Finley but because of Caleb. He can't hike and when I tried to take him on one his stroller just got stuck in the red sand. So we just had to wait at the car--no fun! My mom wants to go with us to CA and keeps saying they will help, but she just doesn't get that it is not just about having another person to push the stroller, it is dealing with the fits and the dropping to the ground--he doesn't understand why he has to wait in line! And it is ME and Tyler that has to deal with it not her. Like at our little dinky theme park here-Lagoon, we went and she kept asking why we didn't do rides with him, well it is old and definately not handicap friendly like Disneyland and quite frankly just plain hard to deal with. We did do one ride and it was because it was new and set up for a disabled person to easily get on and off and they let him ride twice which was a bonus. Caleb loves rides and swimming and all those things but is just as happy at home in his own space watching his movies and playing with his toy. So it may come down to having to leave him home if we take a vacation and that makes me sad as well, so it is a double edged sword. Oh and flying is an issues because last time we did he had a huge ear problem that developed because he doesn't know how to pop his ears and we can't tell him to do it and have him to do. Anywho I didn't plan on this turning into a novel, sorry about that but it was just nice to let out my current frustration to someone who knows just what I am feeling.

Kristi said...

Julie, I wouldn't even begin to say I know how you feel or know what you are going through. All I can tell you is that you are one of the strongest individuals I have ever known...and I don't even know you that well! ;) Just know that people are thinking about you and your family and hope for the absolute best for you. Keep your chin up. I know Heavenly Father is there with you every second!

tammy said...

Hey Julie,

You know, I really enjoyed this post. Your positivity blows my mind sometimes, I like knowing that you have moments like this. Your level of patience and compassion speaks volumes, Collin is a lucky little dude to have you as his mommy, and you impress me.
I don't know how you do it, I reeeally don't know how you do it and still always look so damn good...I'm just sayin'. ;)

Kristin said...

I know I have said it before, but I have to say it again: You are AMAZING!!! I am so in awe of your attitude on everything. You are such an inspiration! Thanks for being who you are!