Our stay at the Ritz (Children's hospital to be exact)

So as most of you know, we stayed at Children's hospital for Camryn to have a Video EEG from July 16th-23rd and it was no Ritz, but it sure was close, despite the sleeping accomidations!!!

The staff is nothing short of amazing. They wait on you hand and foot, they try to make it as fun for the kids and as easy for the parents as possible. I can't believe how giving these people are. The best part? Epilepsy has touched them in some way, shape, or form. They give tirelessly, and smile the whole time. It really does make the stay quite wonderful.

Cam's favorite, I think. Meagen, a wonderful overnight nurse who is getting married in September and we wish her all the best!


So there are cameras on the ceiling to tape all activity. Kind of strange knowing that you're on camera with your child, but you forget about them after day 5, I promise!





Though the items they use seem a little daunting, they put pretty braids in their hair to make it easier for them to feel beautiful.



Though towards the end, it just plain hurts, yk?


And they gave her a monkey to keep her company ;)


In the end, it was glimpses like this that remind me how strong she is, no matter what comes at her.

SLACKER!!!

Hi Everyone!

So I know, slacker on the blog, I have been keeping Camryn's updated so at least you know why I have been slacking!!!

Well, watch out, because here come the posts!!!

The waiting game continues!

Here we are, at the hospital, same condition we were in on Thursday.
When I brought her in Wednesday she was "post dictal" as they called her. She was post seizure in other words. She didn't talk, respond, or interact much with anyone. However, her last seizure happened while they were hooking her up so it didn't count. Now we have been there 5 days, slowly decreasing her medicine (the one I said wasn't doing anything to begin with) and still no seizure. Our office dr comes in tomorrow and I can't wait to ask him how he feels about that. To say, I know you thought it was too rambunctions, but now can we try it my way???
I just don't think it's any healthier to keep her for over a week doing it this way than it would be to just trigger the damn thing and get the answer, but what do I know, I am only her mother. It's times like these that I would like to get my degree in medicine. Just to say, here is my credential, now can you just listen to me? I want OUR doctor back, the one we started with, the one we were referred to, the one who seem to have such a connection with us.

Right before Camryn went in I ran into her preschool teacher who's son died from mitochondrial disease. (I know I spelled it wrong, LOL) and to talk to him and know what it feels like from the other side just drives me that much further to find out what is going on, but also to live every day like it's our last. I have to think that each moment is precious, even when I feel like pulling my hair out cause it is. It's a precious moment connected to another and another, and finally making up the memories of my life, and my family's life. So we are looking into doing the relay for life walk next year for Mike and we are going to do the Epillepsy walk next year as well. I will be working on this stuff with my mother throughout the next 6 months or so, and I will keep things posted and updated here.

I can't believe that by the time Camryn is 5, we might not have to deal with this stuff anymore and actually be able to take a plane to Disney World. I am so excited!!!

Ok, better go, need to get my work done!

I'm standing on the edge...

Listening to Abraham from The Kin. Link included above.
This is the song that brings me to tears when they come to concert.
They have another song that goes something like "Are you standing on the edge? Can you feel the water break? Can you turn it around?"
These lyrics are so HUGE for me right now. Camryn is going into the hospital and as you can see from her Blog, I am still searching for answers. That is until this week. After the opportunity to talk to Dr. Tanenbaum this week, I have learned that until we find out where Camryn's seizures are coming from, we can't really "fix" them. Now as bleak as that sounds, we still have this EEG/sleep study/epilleptologist meeting on Wednesday. Camryn is going to be admitted on Wednesday morning and we will be there until they can get documented what they need. Basically they are going to remove her medicine until she has a seizure tha tells them where it's coming from, or they see her left side go out, or her sleep pattern tells them exactly why this is all happening. Sounds bad, doesn't it? Taking away what my kid needs, to make her "perform". We hope that this test shows us what we need to help her live the most normal life possible. I just want her to go to school and actually learn instead of being pulled out for ambulance rides, and seizures wearing off, and all sorts of other things. However, I am preparing myself for the worst. I feel like I am on top of a cliff, at the very edge, waiting to jump in to water I can't see. If we do this, will we cause damage, if we do this, will we be able to bring her back to normal? I just feel the pressure of this levy building and I am not sure I can withstand the flood. It may meen some major changes for our family, ones we are not prepared to make any time soon.

Camryn has been such a trooper and is having a great day today, but I can't help but look at her and want to cry for the things she misses out on because of this. I think it's why she smiles alot, like she is letting me know that she is okay with the way things are for her. The beauty of it all is that she doesn't remember most of the bad stuff, so she just knows Stacie, safe hospitals, and us.

I just think it is absolutely crazy that this hasn't put me over the edge already. I guess for now, I just need to enjoy the view as much as I can before I jump in.

Beautiful Sky, Bad weather has come and gone

As the storm clouds rolled in last night, it reminded me of the crappy weather we have and how it changes so quickly around here.



I do love how beautiful it looks on it's way out though!!!



Last night's storms brought wall clouds, hail, sheets of rain, and trips to the basement with no connection to the outside world. To be honest, I can't wait until we don't live in this bubble of it all.

Fourth of July Summer Fun!

So the 4th was a gorgeous weekend! We had the house clean, the yard done, and still had a whole day left to just hang out as a family! It was wonderful! We took a look at the neighbor's project and it looks beautiful. Matt and Jodi wanted to take the grass out of this circular area so nothing would hold us back on WHAT we decide to burn. So this cozy area is now our new bonfire playland!



We tried to give the dogs a bath, but it looks like Davin ended up wearing most of it!!!


Maisy is still not a fan!




Harley came to me for relief! She just has this look of, "SAVE ME MOM!!!"


Dan felt bad that she didn't want to get near him, so he gave her some love to make up for it!


Davin was sick of Dan dunking him, so I bet Dan a subway sandwich that he wouldn't belly flop in the pool. As you can see, I won!


All in all a great weekend!

As time passes....

The days get easier. I have less and less thoughts of Mike not being with us anymore. I know they say time heals, but I have always used a different choice of words. Time lessens.
Time lessens the pain...
My pain of losing such a wonderful person in my life is getting smaller. I can rationalize what has happened and that I shouldn't be sad for someone that is no longer suffering here on earth.

Time lessens the vividness of memories...
As time goes by after arguments, horrible things happening in our life, and just plain old negativity, I can't "see the events" as I used to. The way Mike looked that day (after he passed) is fading. Probably a good thing since it wasn't Mike at his best.

Time lessens our needs...
As time goes by and we strive for something, the need of something decreases... The need to be close to his things, the need to be together in rememberance, and the need to submerse myself in our memories.

Yesterday was the first day since Mike's passing that I just did family things. We slept in, made pancake breakfast, and played outside in the pool. We bathed the dogs, and made sure our lawn stuff was done. It was a beautiful day out, high 70's with almost no clouds, neighbors outside doing yard work, and no more fireworks. It was so peaceful. I took over 50 pictures of the kids playing in the water, Dan dunking Davin, and almost had Dan's belly flop into the pool, but I would have ruinded the camera as he was diving towards me! (note to self, another benefit to getting a camera with zoom lenses!)
This time was so wonderful, so needed, so inspiring. Watching my children play, enjoy the time with us, and even having timeouts fullfilled quietly was wonderful! I think the kids were just happy to do something fun with Mommy home. These 3 day weekends make it so nice as we can just take one day for cleaning and getting stuff done and the other to do something fun as a family. It's our seventh day for rest. I miss this terribly. So today, with all the recent events showing me the light, I am putting in my notice at my second job. I do a auditing job for the employees at
General Mills (making sure they leave with the right count of purchased items) and I hardly ever have anything to do, so I make cards and scrapbook on these days. Yesterday I realized that this time could be used for a much better purpose! Making memories!

So as time has passed, I see that I no longer have as strong of a need to make money but to make more memories as the vividness of old ones fade, and to create more joy in my life and lessen the pain of the losses I have faced. It's this lesson that I want to focus on as Camryn goes for her sleep study.

My priorites are back on track :)

Numbness?

So this has been a busy time in my life. My daughter is having more zone outs again but still seizure free for 8 days now. My cousin, need I say more. My 30th birthday. My life in general (being an accountant quarter ends are always tough) and it's just nuts to think of what I have to do in a day to make sure I am not swollowed whole.

In all of this craziness, I am reminded of how well I am dealing with all of this. I fell apart with my grandfather's death. I lost my father that day. I was distracted, didn't want to wake up, couldn't take care of my kids, I even shifted Davin to formula at this time. I remember my heart racing quite a bit. I remember feeling so overcome with emotion and trying to explain to others that I just wanted to be sad and no one could take that from me. I remember it being the most difficult time in my life.

Now here I am again, losing a very important male in my life. And I have only cried 3 times, all very brief. I am pretty sure I feel numb. I don't want to do much, I was at my own birthday party finding myself ready for a nap. I wonder if this is how I am coping. I wonder if I am just not as sensitive this time because I knew this would happen, or am I cold? Have I grown cold to the emotions of death and loss? Do I fear spinning out of control like I did before? What the cause is I am not sure.

I am pretty sure that my aunt thinks I am being insensitive. I am pretty sure that she thinks she is right where I am when it comes to Camryn (based off her comentary) and I know she has suffered a great loss. I don't however feel we are in the same place. She talks about worrying about her sick child, I can see that. She however almost never had to take care of him when he was sick, his wife did that, his father did that, he did that. Why? He didn't want her there. My child cries for me. My child cannot help herself.
There are some similarities though, I recognize the fear, I recognize the pain, but I also recognize that I refuse to cry in front of my child. I refuse to let her think that I won't be here 110%. I refuse to believe we are the same. I refuse to beleive that when/if our time comes that I woudn't honor my child's wishes.

Is this something of the generation before us? Have they always felt so self-centered in such important life issues? IS this HOW we have become the pioneers we are? Are we so afraid of not being sure that we push back? It's like the kid who's mom makes them double check their work in on anything (chores, locks, homework) that they second guess what they are doing going forward to make sure they don't disappoint others? It's a round about form of people pleasing, is it not? I guess I feel that maybe I am trying to please Mike, but in this, I have found feelings of questioning my aunt. How could she not want to make the last thing she does for her son a wonderful thing that was exactly what he wanted?

I feel a fued coming on and it all starts with my aunt, but it probably ends with her ex and her daughter. It should be interesting!



In other news, I am 30. 30. 30.30.30.

The famous question of the day yesterday? "So do you feel 30?"

Answer? "I have actually felt 30 for a long time, father time is just catching up"
*giggle*

Another day has passed...

I know that they say time heals the heart. Helps it to move on. Myabe I am strange. It wouldn't be new.
Mike was a postive person who wanted us to move on in doing something positive. He wanted us to be strong. Now most of us are shocked still, some are crying about everything. I am not there. We knew this was coming, in the sense that AML was difficult to fight. We knew that Mike had a time limit. It was the peace that he made with it that kept me strong through this. Mike knew his time on earth was limited, most angels do. And as I rushed to meet my mother to drive up to the hospital, so many things rushed through my head. Thoughts of memories, asking why, and wondering if his mother would be in danger if we left her alone. Then, as I sat waiting for my mother, this calm feeling washed over me. I could almost feel Mike rubbing my shoulders like he did when he could tell I was stressed. The tears stopped, my heart slowed down. It's like I could feel him there trying to make me open up to hearing his message. My mother calls it an out of body experience, but I see it as an attempt to connect instead. I think that Mike wants me to move forward with this with a purpose. I think he wants me to be the rock for everyone else and remind them of his words when he was on this journey. Mike wanted to fight this disease, but I know that God would not let him suffer any more if he didn't think he would still be here with us. I really feel that I have found what direction I am supposed to go in my life. (I have been secretly waiting for this, and now it's here) I am supposed to take the lessons that Mike has taught me about compassion, consideration, and helping others and move forward with it. To help others with what they can't do for themselves. To help them find peace in times of stress. I finally get it. I really believe that is why I feel so calm in all of this.
In the wise words of my friend Jovi, (and I am paraphrasing) it's often when we forget to help others and choose not to stand up for those who cannot stand up for themselves that we lose a piece of humility in this world.
Next mission? Figure out how to move forward with AML, ACS, LAF, and how I want to help find the answer to this horrible disease that takes away the people we love.

My favorite words right now???
I heard the news today, it came out of no where, wish I could run away, but where would I go, is this my destiny? something to wonder, what will become of me, god only knows.
And they say the road to heaven, it might lead us back though hell.

maybe tonight, maybe tomorrow, we'll win this fight and bury this sorrow.
We're so alive, still holding on, not ready to die, so we LIVE STRONG!

My pride is left for dead as my world gets shaken, the thoughts inside my head are so hard to control. Stearing down the unknown, one thing for certain, it may break my body, but NEVER break my soul.
And they say the road to heaven, it might lead us back though hell. So were holding on for more than stories to tell.
maybe tonight, maybe tomorrow, we'll win this fight and bury this sorrow.
We're so alive, still holding on, not ready to die, so we LIVE STRONG!

We LIVE STRONG, We LIVE STRONG, We LIVE STRONG.

we will live strong
we will live strong
we will live strong

maybe tonight, maybe tomorrow, we'll win this fight and bury this sorrow.
We're so alive, still holding on, not ready to die, not ready to die!!!!

maybe tonight, maybe tomorrow, we'll win this fight and bury this sorrow.
We're so alive, still holding on, not ready to die, so we LIVE STRONG!

This band has been my favorite for almost 3 years. Since Feb of 2006. They were going to be on the first boat I went on. Little did I know the significance they would have in my life. I am proud to say they will be on the boat in 2009 and I will be bringing a photo of Mike for them to sign. I can't believe how the circle has come around for me.

Thanks Mike!

A quote about Mike

"Some people come into our lives and quickly go. Others stay for a while leaving footprints on our hearts, and we are forever changed."