" Nobody will ever really "get" it."

Words spoken by Conner that cut me to the core. He is so right, nobody outside of these four walls will ever "get" it. Kids are so astute and insightful sometimes, they can "get" it!

   Marty has been doing well, we have gotten rid of the "evil machine" and are only doing manual exchanges. That consists of heating 2000 ml bags of dialyasite and letting the fluid dwelling in his stomach drain out and then putting 1700 ml of fluid back in. The process takes about a half hour all together. We have to mask up, shut the door, I wash my hands, dry them with paper towels and then hook his catheter into the bag. His catheter is in his stomach, the fluid goes in the peritoneal cavity. We do this process four times a day now. It has helped greatly but is very time consuming and binding. We have to be home at those four times a day and not get off track with time so he can go to work. But it beats the machine beeping and alarming, causing Marty to lose sleep and not get rested. I also feel the machine wasn't giving him the proper amount of fluid. The scale never measured right and I think that caused him to not get enough dialysis. He has been feeling so much better these days, but that doesn't mean he is better or always has a good day.

 The past four days he was dried out, which means dehydrated. That causes him to feel weak, nauseous and overall not well. So we had to cut back on the strength of the fluid and amount of dialysis. When he has a bad day, not much gets done otherwise. We have to stay home and make sure that he gets rest.

  I guess we do a good job of making life look very normal and undisturbed. It just looks like we are not showing up at things or missing things because we are being lazy or uninterested. Nothing could be further from the truth, the truth is we just need to stick close to home. I really don't like it at all, the kids don't like it at all and Marty doesn't like it at all. I just hope to give you more insight on our day to day. That doesn't include doctor's offices, nurses calling and dealing with two different pharmacies. Just waiting and hoping for things to change soon!

New feature

New feature on the right, a link to Feedburner.com that will allow you to subscribe to my blog via email. Some of you don't use Blogger dashboard and it will enable to you get a email notification when I post a new blog. I like have all of my blogs in one place and it makes it so much easier to follow a blog. Hope it helps, let me know what you think.

I am really trying here

I will be glad when I don't have to write this way anymore. I would much rather write funny blogs about life, travel, school, kids and not blogs about tough stuff. Life has not changed and there is nothing we can do about it. We just press on,putting one foot in front of the other and keep trying to live the best we can. I used to be a very active person, involved in many different ministries, activities and assorted things. All of that has come to a halt and my focus has turned toward home. There really is little time to do anything besides church, school and doctors appointments. Throw in baseball season and tennis lessons, my free time is gone. Part of that is just having tweens with busy social lives and is completely normal. Add in a chronic illness, things get really hairy....fast. On top of that all, my husband needs me. It is a very scary, tough and difficult time for him and he needs my support. He really does struggle without my support and it is imperative that I give it to him. I don't want to look back someday and regret not being there for him. He comes second only to God and first above everything else. So when people come up and say, " I never see you anymore!" or " You never call me anymore!" it is very frustrating. Not to mention the people who give "looks" yes, I actually get "looks" like " you hurt my feelings because you don't pay attention to me" kind of "looks". I don't like that people feel that way, but it is the way life is right now. I just don't have much time or energy to put into others outside of this home. That is why I love Facebook so much, I can keep up with my friends while helping Marty. During this time, I have found many relationships to be one way streets. Some relationships have been only one sided and without me making the effort, they are non exsistent. My sincere hope is that nobody takes my behavior toward them personally at this time. It truly is not personal at all, it is just the way things are. I don't mean to hurt your feelings by not calling or joining in social functions. I just don't have the time. I am sorry if I can't spend much one on one time with you right now, I just can't. This is not permanent, things will change one day and I will have more freedom than at this exact moment. If you miss me, call me and I will make time to talk to you. Getting together is really hard at the moment and you will have to forgive me there. I am leery about writing about this, but I feel it has to get out there to prevent hurt feelings. Plus, it is just another facet to this story and needs to be spoken. Thank you for listening and hopefully understanding.

Kind words, give them and get them

Last week, we took Marty out for his birthday to Applebees. Behind us sat a family with two young children, actually a infant and a toddler. The whole time we were there, we never heard the toddler. When I stood up to leave, he started waving at me and smiling huge smiles. Being the kid person that I am, waved and smiled back. As I walked by, I told him hello and said, "You were such a good boy, I didn't even know you were back there." His mom beamed as I looked her in the eye and his grandma said, " He is a good boy". I remember back to when my kids were younger and how much it meant to me when people complimented my children. My favorite compliments were from my grandparents, telling me what good kids I had and what a good mother I am. Those still reasonate even though they are gone. This weekend, a older couple told me what well behaved children I had. I was glad to hear that because lately at home, they have been not so well behaved. Then today, a friend/old co-worker told me, "You are lucky to have a good husband and father for your kids. You have a really nice family and you are lucky." WOW, talk about a good feeling. For me, that means so much. One thing, Marty and I both come from broken homes, where we didn't grow up in a traditional family setting. We feel so blessed, to have something we always longed for in our childhoods. The second part, is no matter how sick Marty gets, it could be so much worse. We could be miserable and unhappy. But, we aren't and we are blessed even more. So the moral of this blog, when you see a behaving child, be sure to tell the parent. When you see a family that you admire, tell them and encourage them. You never know what goes on behind closed doors and how much that may encourage them.

Connerisms

Conner has been on a roll lately, I know how much many of you enjoy his little "Connerisms" so I thought that I would record them for posterity.

After hearing someone worry, he said, "Worrying is hard work." , wow! Pretty insightful and true.

We took Marty out for a birthday dinner the other night. He was wanting the Orange Chicken bowl. My mom had it last time we went and it was spicy. So I told him, "It's spicy, you won't like it." about three minutes later, he turns to Marty and says, " I want the orange chicken bowl, but I heard it was spicy." I cracked up laughing, I love it how he "heard" it was spicy.

Not a Connerism per se, but very cute. On Valentines day, he bought his sister a card. Upon later inspection by Elizabeth and I, we found out it was a card "To my brother with love." he thought it was "from" brother. Even funnier, he signed it "bro bro" So cute and heartwarming.

At baseball tryouts, he got a chance to stay late to help out. When he was putting on his gear, he said, "It's called showcasing Mom!" Oh dear! Then two nights ago, while watching pairs skating. He asked, "Why doesn't the guy pick the girl up by her blade and swing her around. I want to see them do that!" Oh dear!

Olympics

I am so excited the Olympics are here again, I love the winter Olympics especially. I have been a life long ice skating fan and loved to ice skate when I was younger. One of my most favorite memories comes from the 1984 Olympics. I remember sitting in my Gramie's den, on her lap and watching Scott Hamilton skate to Olympic Gold. I was hooked! Then in 1984 the Olympics came to LA and we got to experience the Olympics in our hometown. It was fun watching the torch run go through our hometown. I remember taping and watching the Opening Ceremonies over and over. Then of course, the famous Nadia miniseries came on channel 5 and my life changed. I became obsessed with all things Nadia and gymnastics. I also had that on tape and watched it everyday for two years. Then of course, the 1988 Olympics and the battle of the Brian's, I loved Brian Boitano. Katrina Witt won her gold medal that year, beating out Debbie Thomas. I have so many fond memories of watching the Olympics as a young girl. Now I love teaching my kids about them and watching along with them. Someday they will be my age and remember where they were when they watched. Conner loved seeing We Are The World premiere during the Opening Ceremonies. He said it was cool that when I was young the first one came out and now he is young and the second one came out. So if you wonder where I am for the next two weeks, you know I will be glued to the television.

time to blog again

Slacker, such a slacker. I need to blog more often, recently I have been in a slump. I always have things in my head to blog about, things the kids said or did, things I want to say( sometimes I must refrain from saying, lots to blog about. Maybe I just need to be random, actually I am random as it is, but maybe just put my randomness down on paper. ~ I am happy to be who I am ~ Three F's state who I am ~Faith is the foundation, proud to be a daughter of the king. ~Family is number one, I am part of something bigger than myself. ~Friends are really important to me. I am blessed to have some really great friends. I recently shared my life's journey at a missions meeting. It was very emotional to see where I have come from and look to where I am going in life. ~kindness is important, just a little goes a long way. ~time is wasted by being rude in any manner ~treat others as you yourself would want to be treated and love your neighbor as yourself. Words to live by. ~live life with no regrets, it's a waste of time. ~ if someone is hurting help them ~if someone is hungry feed them ~listen more than you speak( that's a hard one! I love to talk) Just some things that are really important to me. Things worth saying, things I want my kids to know about life, things that I work hard to instill in them for the future. I told you it was randomn.