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."

A loss that inspires growth...

Today was just a whirlwind.
Crazy busy, with a list a mile long. I went from spinning around my world to standing still and the world spinning around me.
You know like in the movies where the girl is standing and people are running around her? That's what I felt like today. You would have never known it from the way the day started.

I woke up before the alarm clock, not completely unusual for me, but since I sent to bed at 10 last night it was a little off. I got up, showered, got ready for work. Camryn was up, so I hung out with her a little, had breakfast together, and just made sure I thought she was okay to leave for the day. When I dropped her off at Stacie's she was fine. Running, jumping, playing. So off to work I went. When I got there I didn't bring my laptop in and I thought it was me being forgetful, but then I remembered we had an all employee meeting, so I asked when it started and when they said 5 minutes I figured I would get it after. Then when I arrived at the meeting, I didn't even realize that the new hire introductions were starting until they called my boss's name. Then it hit me. I was so excited! I have waited a year for my introduction and it was everything I wanted it to be. Funny, light, and inspiring (daughter whose live was saved with our product). Then as I was standing there I see my mother's number show up on the screen. I figure, this is more important, I can call her back. Then as I sit down, I see it flashing again and I hit ignore again. Then another one and I am thinking, what could it be??? I honestly thought she was checking on Camryn and the ignore button was actually skipping voicemail or something. By the 4th call (usuallly I am quicker than this, I swear!) I thought, something is wrong, she' needs to talk to me. So I pick it up and walk out. The words are still ringing in my ears, "Mike died." Followed by tears. I was so stunned, I knew she wasn't playing a prank, but they said he was stable as of last night. pneumonia, but stable.

She said she was on her way down and I told her I was leaving and would call her. When I got to the truck I called her, we decided on a meeting place. When I got there, the phone rings, it's Stacie. That can't be good. Sure enough, Camryn was zoning, unresponsive for 2.5 minutes. As mom and I are driving downtown we ran into every roadblock of closed entrance to every interstate. (Did I mention that I hate construction season???) So she was unresponsive, then she went unconscious. So she gave her Diastat, and after 5 minutes she didn't react, so they called the paramedics. Now in all of this, truck is at the shop getting brakes done and Dan has no vehicle so he walked over with kids. Then she wakes up, the clinic says to just watch her at home and bring her in if she has another one.

So we get down to the hospital finally and walk upstairs. I saw my aunt (and her co-workers) in the hall. She was calmer than I thought she would be. I really expected to find her a mess. What mom wouldn't think that another mom losing her child wouldn't be a complete mess???????? So I ask her where Janet is (his wife) and she tells me in the lounge. I walk in, no Janet, but everyone else. Including my uncle (they split when we were kids) and I have not seen him in a while and he was wearing the I'm a wreck but I don't want to show it look. My heart went out to him. I could feel his pain. I could feel the hole in his heart, it was awful. I have loved my uncle, always, despite how they split, he was a man who did well for his family, and he is still with the only woman he cheated with, not to condone, but I really feel he left to find his soul mate. It's like he understood the bond with Mike and Janet. They were soul mates. I truely believe that Mike fought as hard as he did because he didn't want to leave her. A "lit" soul like his.

She didn't want to be touched. She didn't want to talk anything but getting out of there. Now to most this might be off-putting, but I understood. How can you process losing the love of your life so suddenly? Right in the middle of making a life together? It seems so unfair. So unjust.

So she didn't suggest we see him. She thought it would be too hard. I can't not go see them. It's part of my closure. It helps me visualize them and that they are in a better place. Something our medical professionals couldn't provide for them. So my mom and I went in. He was swollen, typical of the treatment. His eye was more swollen than normal. We didn't know at first, but we found out later.

Mike had AML, now this makes it EXTREMELY hard to fight off common infections. So when they said the leukemia was back and that he was going in for another transplant (his third) we thought he would beat it. Well when they said he was on a ventilator I was shocked. Then he was going into surgery to suction out an infection. Now this is all we were told. No one said it was a fungal infection and that he was fighting fungal pneumonia. This would have red flagged me. I think this lack of information was the biggest reason I felt blind sided. None the less, when his BP dropped last night they still thought they would get it under control. My uncle said when they intubated him that he said, "I wanna fight, I want to fight, Dad!!" So he was still on with the program. It almost seems like he didn't see this coming either.

So as we were leaving, I decided to stay with my uncle and his family and see if I could offer help as Janet didn't need a bigger group of followers. She just wanted time to herself. He started to cry, you could see how cheated he felt. I tried to remind him that Mike would be pissed at us for mourning his death, that he wanted his life celebrated and that we needed to do something positive to remember him and help others. He reminded me that I was right, so I feel good that we will do something to continue the fight.

We then left to tell my grandmother. When we arrived, my aunt was already there and told her herself. They seemed to deal with it pretty well, so I just kind of let them say what they needed to. We then made plans to get together tomorrow and my mom and I went to eat. We hadn't eaten in over 8 hours, and it was time. As I drove home I had thoughts reeling through my head of all the crazy things Mike did . Growing up he was that kid who seemed to have it all figured out, and you just had to watch. Now I know why.

In death, comes growth in myself and my love for him. Mike's life taught me many lessons and it taught me more of who I want to be. I appreciate what his life taught me as I go through Camryn's battle. I remember that we just need to keep moving forward and fight. Fight no matter what for what we believe in. And that helping others, above all is important. It's when people don't help each other that the world peace journey dies a little. It's when we lose our connection with others and ourselves.

In his death, my faith has grown. I saw what his purpose in life was. To change the world, one soul at a time. To pass on that faith in God and in people. To make sure that he left the world happier than when he arrived. He achieved his goal. He made you smile every time he entered the room and it's that smile that I will remember.




Mike, I miss you, and I love you dearly, I will celebrate your life and keep your light burning.
Peace be with you.

Not to be insensitive, but I could have handled this on MY own! Sheesh!

Well we finally get her to stop having seizures and having really good days, and then...

She trips on a toy hits the corner of the door on the way down and ends up with liquid stitches. On the night of my birthday dinner with friends. So I get to Chili's, slam 2 margaritas thinking in 3 hours they will wear off and I will be driving safe, and then my phone rings. Dan says "Her forehead is split wide open, she's bleeding like crazy and you need to come home now!" Now if he wasn't screaming, I might have been more receptive. However, Dan tends to over react to any injury, so I asked him to take a picture with his phone and email me a picture of it. Of course he's pissed and hangs up on me before I can tell him I just had over 40 ounces of blended drinks. I mean, that's why we bought the phones, so we could do stuff like that. Also, I am not that cold, BUT here is the situation. His truck is getting the brakes fixed today and he has no company vehicle because his stupid ass waited so long to bring it in, which only happened because I called to fit it in there. Also, I am 30 miles away and our neighbor behind him would be more than willing to bring him in and Stacie who is across the street would also do the same. So I tell him to call them when he calls me back saying he sent the email.

Long story short, neighbor's husband took the two older and watched spongebob while she drove dan in with the younger two. I met them at the hospital, 2 miles away. She went to UC and had liquid stitches and we were done before the girls left the bar. So I missed out on my birthday dinner, my husband thinks I was being cold because I didn't want a DUI (I mean seriously, look at my luck lately), and my child has finally joined the other kids with an injury requiring stitches.

All in all, not a bad night, but really, all this drama over Dermabond?

He's such a woman!

Is some cosmic setting off?????

So my cousin is sick. He's had AML for almost 5 years now. He's done so well with it. Well the Leukemia came back and he needed his third transplant in about 15 months. He had the transplant last Friday. Now normally he gets a fever, it starts to break and he goes home to heal. Well today he developed a sinus infection that was so bad he needs to have surgery to remove it. This is the worst possible time as his immune system is so low right now. They have intubated him and I plan to go down there tonight to see him.
Please think good thought of him and for him. We want him to win this fight, even though the odds are stacked against him. Never a more deserving soul to stay with us.

My grandmother was really sick (my dad's mom in FL). She was apparently so sick that when her heart stopped they had to bring her back from the dead. I don't know all of the details, but she is too fragile to know about Camryn or Mike right now. I will post more as I know.

I just don't know how much I can handle. Here's the run down.

Camryn-Seizures/sleep disorder
my cousin-AML, transplant complications
Dan's mom-Congenial Heart Diseases fluid in lungs from it, home on bed rest.
Dan's grandmother with the stroke is now having seizures they can't stop and is losing milestones.
My grandmother was revived from the dead due to what I have not found out yet.
My mother's blood scare still hangs in the balance until the end of July.
Dan's uncle had 7 mini stokes over the last year and now has permanent memory loss.


Now is it just me or do bad things just keep happening? Is someone trying to tell me something? What cosmic setting has been knocked off it's course? I'd really like to put it back!

I can make you GIGGLE!

Early Sunday morning I found my girls in bed (I went to bed early expecting a seizure from Camryn so I woke up early too!) and they were just too cute for words.


Camryn immediately jumped out of bed to get in line for the potty and left Elli behind. As you can tell, she was so thrilled!


She tried to hide from me as I tried to engage her in the camera since she is such a ham, but it didn't look too promising.


All it took was "my giggle girl needs smile" and I finally won.


I love how she makes my heart smile like this every time I see her!

Once in a Lifetime!

Ok, so I will admit it. Before meeting my husband, Star Wars did not have a special place in my heart. I associated it with being a Trekie and I hate Star Trek. However, post nuptuials I have changed my ways. After being dragged to episode one I needed to go home immediately and watch 4, 5, and 6. I had so many questions. However, throughout, I loved Yoda. Who wouldn't? Old, green, and too smart for his own good, right? LOL When Dan called and told me that he won VIP tickets to the Star Wars Science museum exhibit I was stoked. We had access to all of the original scale models, costumes, rubber figures, and all the technology explanations behind the movies. It was incredible. I have more pictures, but at a whopping 90 photos, that's alot of uploading. My favorites will have to do!!!!


Dan's favorite thing was meeting the man behind the mask. Or should I say Armor? Anthony Daniels (I think that's his name) was the guest speaker and Dan was thrilled when his HR/Marketing represenetative talked the president of the museum and Anthony into a photo op. Here are the results. Remember, people rushing into the exhibit behind us!!!! A few bumps along the way...

Getting older or just going through another stage?

Lately I wonder what it is that I am going through. There are so many events that have happened in my life over the past 5 years that I know they take a while to catch up but so many of them seem to be overlapping. And ever-changing.

Five years ago next month I found out I was pregnant with Camryn. Now for us, this was a shock. We just had Elli, she was just 6 months old. We were told that we would probably be done by 25 as far as capability goes that we knew that putting two kids that close together would be too much for us. Or so we thought. This was the first day that I truely realized the statement that "God never gives you more than he can handle" and I had to absorb it. It took me twenty minutes to peel myself out of the chair at the clinic, and two weeks to openly talk about it with my closest friends. It took Dan and I two months to process it ourselves and feel comfortable enough to tell family, and only because at the 14 week u/s we were told that she was 3 weeks small and they wanted to check for CP. Nothing like a dose of reality to give you a swift kick in the pants and teach you what is important in life. It was from that moment on that I knew, whatever God gave me, I could handle. Dan on the other hand took it much better. He was ready to accept that this was it and others would have to shut off the comments if he wanted him to speak to them. I went through alot of thinking during her pregnancy. Especially since it was so much like Davin's. I was convinced she was a he. So convinced that by the time I left the u/s being told he was in fact a she, I couldn't speak to anyone. It took me months (about the 37 week u/s) to realize she was really a girl. Now for most women, this is not as hard to digest. For myself, this meant more diagnosis, more therapy, and more time away from the goals I had worked so hard to accept after the PCOS diagnosis. Once she was born something happened. I realized it didn't matter, that I could do this, and I could do it well, I was ready to face this challenge head on. And as time passed and she met milestones Dan and I thought, "Could it be? Could she be OK?" and we let ourselves believe that it was just God saying, here, here is an easy pass since you have been through so much already. Then time passed and some milestones were late, some didn't come at all, and then she lost some she had gained. We knew we needed to find something out, but we weren't so sure what. At 12 months, our worst fears. A CT showing Hydrocephalus, and surgeon appts for the following Monday. WOW. As her placement took place we thought it would fix everything. By the time we got to the revision we were hoping it would fix all the issues. After 1 year of headaches and pain for our little girl we decided it was time to seek a new doctor. As soon as the new doctor made the corrections the changes in Camryn flowed in. Her head no longer hurt, she could walk down the stairs, she was breaking through therapy goals in a flash. We were thrilled. Then the zone outs came. They got worse. Her first seizure at school this past October. And now after Months of medicine we are still fighting the battle. Finding a way to fix Camryn. I have come to terms that we can't fix Camryn, we can only help her. This is the hardest thing I have ever done. EVER. I have always prided myself on finding alternate routes. It's my thing. Roadblocks don't mean stop, they mean go around, detour. And this is one I just can't find a detour on. It's difficult. It's painful. It's discouraging. But most of all, it puts cracks in the definition of myself. So not what I want to deal with. But I look back at Camryn's road into our lives and I realize that she's here to teach me something. Something I haven't learned yet. She's always been here for that. I am convinced. To teach the world something about not being text book. I just need to find it.

My grandmother is dying of Alzheimers. This in and of itself feels like a cruel joke. Not just for me, but for anyone who has family dying of this disorder. To watch losing someone piece by piece is so cruel and degrading. This grandmother has been proceeded by some of the strongest women I know. All have lived to over 100, and have lived hard. Some in fields working well into their 90's. I have grown up off that strength and determination. I have built my values off of that. Life is what you make of it, no matter how old you are. And to watch that spunk slowly disappear is so hard. I see her cry, as she is greiving her independance as well. It's something that reverses some of the strength that I have built my foundation on but this has also taught me something that I have needed to learn. More on this later.

My cousin is dying from Leukemia. AML to be exact. Now this cousin I spent all of my childhood days with during the summer, weekends, holiday breaks, and family get-togethers. You know that person that you know is destined to be great and you feel like every time you are with them they are doing something big and you are a part of it? I have grown up most of my life knowing this. Mike brings light to life where there is only darkness, he makes every moment count and regrets nothing. I have admired him my whole life for this. Even if he is 10 months younger than I am. It's just a light you can't miss. He has taught me that through sickness there is laughter, through pain, there is joy, and through degeneration, there is rebirth. All of this great, and useful, and so inspiring. I just didn't know how much I would learn from him at the time, but every year this list gets longer and longer. I love him for that and I try to celebrate every aspect about life as much as I can through this growing knowledge.

My husband's grandmother suffered a stroke about 2 months ago. Such a spunky lady with determination and fight that seems to grow when you piss her off. She has no problems telling you how it is and how it's going to be and I have loved this about her since the day I met her and her oldest grandchild was naughty. Still makes me laugh to think of the glare that could have cracked the earth to it's core that day. Such respect of an elder. That's all I can title it. When she suffered this stroke, it happened in the middle of the night and she wasn't found until morning. Now working in the industry I do and knowing what I know about perfusion and effusion, I knew that things didn't look good. When she got to the hospital, they said the same. They were actually preparing the family for the worst. Then that fight came out. She was getting better, eating, sitting, even standing! The day she walked 40 steps we knew it was darkness of the past and that she would continually improve. Then she was moved to the nursing home and her anti-seizure meds/orders were not sent over either. She started having more seizures and more blockage and all progress was lost. They weren't sure what would happen. So now she is slowly working towards the first fight she one. Independence. Another struggle to watch someone lose that independence.

Through all of these events and relationships I have realized something. They all have something in them. Independence. Strength, and will to fight! It comes from within.
They all have determination that no matter what comes at them, they will move on, adapt, and make a new plan with the same courage!
They all have people they can count on to move forward with them and encourage them when those low moments come and to defend them when they are not strong enough to defend themselves.

All of these things make great people. Make people to admire. I have always had a talent for seeing this in people. I never asked myself why I wasn't one of those people. Why didn't I want to be one of those people. Why haven't I made strides to be that person????


This week I have learned why and how to change it. Such an revelation if you will.

I have for years thought that talking things through with my friends was how I coped. How I needed to deal with everything going on. That I needed to confide in others who knew me and knew what I was going through to make myself feel like I could continue in the fight. The closer I get to 30, the more I know this is not completely true.

Friendship is a two way road, no matter who it is with. Any relationship should be that way. And like the saying about friends for a day, month or lifetime really describes if interpreted is that...
If you have a friendship that becomes a cul-de-sac instead of a two way road, it's time to let it go, use what it has taught you, but not let the dead end poison you.
That if the friend ship is one of a lifetime it needs to be nurtured, it needs to be re-evaluated, modified, and tended to.
If it is a friendship for day, it was meant to teach you what you needed to learn right in that moment.

This week I learned that friends I have been the only party working on the connection need to be let go. For when they no longer stand up for other friends when they cannot stand on their own, it has become a cul-de-sac that only has signs of different views.
That if they want to come to me, they will and if they are willing to make it a two way street then it can become a friendship once again. As friendships come and go.
That if my "friends" decide to use means that didn't come from me, but through a game of telephone and gossip, that they aren't really trying to be my friend but divert attention off of them. So they aren't shunned by the bully from the friend who can't stand up for themselves due to exaustion.

I have realized that my life has little time for others. And that I need to be selective about the ones I allow into my life. After all, the reality of Camryn's disorder is that she can have a seizure at night that no one sees and it could either do so much damage, or several could do tons of damage collectively that some day she could be living in a bed. Helpless. The reality is that it's one scenario that I am not willing to let my actions stay the same for. I will not be the parent who sits at the child's bedside and says "I wish I would have made more memories" or "I wish I would have done things differently." I refuse to let the moments pass me by and I will make the most of them. And the hard reality of this is that it means only allowing enough time for the friends that keep our relationship a two way road and include our children in our events for the time being. The ones who know that some day we will get through this and will love us for who we are at any given moment and accept all that comes with that. Now we have several friends like that and I am thankful for them. So thankful.

I have learned that I still had to face these challenges alone even though my friends have helped me picked my path. I guess I feel like I am old enough to make these decision myself. That I can use my time with friends as a way to reconnect every so often and discard the ones I don't have time for and don't enhance the journey my family is on.

I think that through all of these people I have learned strength, but through Camryn, I have really learned what compassion and consideration is. It it's fullest form.

Wow, did I just say that? 5 years ago I wouldn't have even thought I could express that, let alone type it all out. Maybe I am growing up.