Friday, February 19, 2010

Thoughts

I've come to realize that if I look at what "could have been" it just makes my life a million times harder. It's pretty tough not to see things that make me wish we could have just been as normal as a family with triplets can be. It's really hard for me to see other healthy, thriving, HAPPY multiples. Not that I hate this life we have now. I love my family and my life with them in it. I would never trade my family for anything. It makes me sort of think, at times, of a parallel universe, where that could of been us...happpy, healthy, and just living life!

I just wish for...for a boring life. Does that make sense? I wish for that...a "normal" life for all of us. Why should my girls have to suffer? Why is it that out of every set of multiples that were born as early as ours were, OUR girls drew the short straw(s)? I just can't understand that. I may never understand that. I'm not sure that I will ever be ok with not knowing why, but I don't have any other choice, do I? And I know some people say "Well God chose you because you are strong" or "He chose your girls because they are fighters". Well, I say to that- That's total bull shit (pardon my french). What if we were weak, would that mean my girls wouldn't be suffering now? Would that mean that if we couldn't deal or handle the life we've been given, we would have been dealt an easier life? I bet there isn't a person in this world who is strong enough to be happy with watching their child(ren) suffer and say "Well God chose us to suffer because we are strong and can handle it". And like I said before, I love my children, love my husband, my family, but not one day goes by that I don't wish things were different for them. I would sell my soul to the devil to keep my children from suffering. Even if that meant I could never enjoy them being happy and healthy. I would be ok with that. As long as THEY WEREN'T SUFFERING! I would sacrifice anything for them to be healthy and happy.

I look at my children everyday and feel whole-hearted love and pain at the same time. Pain for Justin who isn't getting to grow up with his sisters. Pain for Anna when all she wants is to follow her brother around and play with him, and be close to her sister. And pain for Ayva. I have to look in her eyes everyday and see that she is in there somewhere, just trapped. Trapped in her body. Trapped with a brain that can't stop having seizures.

How do you look in their faces everyday and not cry? Cry for them. Cry with them.

The world is a very unfair place. A place that I cannot understand. And these days it gets harder to try to understand.

It's like a nightmare. A horrible nightmare that won't end. Only I don't think we will wake up anytime soon...I don't see an end...when will we wake up?

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Thursday, February 11, 2010

Started the Ketogenic Diet- our hospital recap

We called Monday morning and the hospital said her room was ready. So we leave and head straight to the lab, which they told me to do before we checked in. There were no orders for her labs, so that took an hour. THEN, we walk over to admissions where they tell me to have a seat while she calls upstairs to see if her room is ready. Two hours later I'm gold that there was a mistake and we have to share a room with another family. We get up to her room and the other family is already there and has already taken the side of the room with the bed, the bathroom, the tv and the window. O-K...all I had was her crib a chair (which was also my "bed") and a TINY space for my feet! The other baby cried ALL.NIGHT.LONG. And since I was "sleeping" in a chair that had no room to recline, I got no sleep. I complained to the hospitals patient advocate and she tells me she's sorry, gives me a gift bag (which consists of a St.Patricks Day face stamp, some Christmas tissues and a few snacks) and says nothing can be done. Great. Later that day, the other family starts yelling at the nurses and they tell me I can move into a room with another kid and get a bed. So I moved. This new kid cries all night, his mom isn't there because she has other kids and they aren't allowed in the room, and has six monitors going off all night. The next day they say I can move again into a room that as of now had no room mate, but they couldn't guarentee that someone wouldn't be put in with us later. So we move again! And here we are, waiting to be discharged, in a room by ourselves. Ayva has done really well with the transition onto the diet. She didn't get sick and we have high hopes that this is the answer for our brave princess. Thanks to everyone who kept her in your thoughts this week! I will post some pics when we get home!

Friday, February 5, 2010

PICTURES!!!

I'm going to show everyone some pictures I took today! We had an impromptu photo shoot in our living room window today and I think they turned out GREAT!

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