Last year at this time we were trying to get some sleep. Tomorrow Morning, July 11th is when TJ was placed on the Berlin Heart. It was a 6 hour surgery.

The procedure wasn't as simple as it sounded, it never is. I think about this surgery al the time. I have images in my mind I wish I didn't. I wish I never saw him right after this surgery. I questioned what we were doing. He was so sick, Oh My God, he was so sick. It just hits me from time to time.

Our lives are so frail, we forget it and get wrapped up in the stress of daily life. We have to work to pay the bills. We have to work more to pay for the things we want and need. We have to, We have to, We have to. We say these words all the time.

We don't have to do anything. I think the world needs to stop and breathe. Stop and enjoy, stop and remember.

Tim McGraw sings a song, Live Like You Were Dying:

He said I was in my early forties, with a lot of life before me
And one moment came that stopped me on a dime
I spent most of the next days, looking at the x-rays
Talking bout' the options and talking bout' sweet times.
I asked him when it sank in, that this might really be the real end
How's it hit 'cha when you get that kind of news?
Man what did ya do?
He said

I went skydiving
I went rocky mountain climbing
I went two point seven seconds on a bull named Fu Man Chu
And I loved deeper
And I spoke sweeter
And I gave forgiveness I'd been denyin'
And he said some day I hope you get the chance
To live like you were dyin'

He said I was finally the husband, that most the time I wasn't
And I became a friend, a friend would like to have
And all of a sudden goin' fishin, wasn't such an imposition
And I went three times that year I lost my dad
Well I finally read the good book, and I took a good long hard look
At what I'd do if I could do it all again
And then

I went skydiving
I went rocky mountain climbing
I went two point seven seconds on a bull named Fu Man Shu
And I loved deeper
And I spoke sweeter
And I gave forgiveness I'd been denyin'
And he said some day I hope you get the chance
To live like you were dyin'

Like tomorrow was the end
And ya got eternity to think about what to do with it
What should you do with it
What can I do with it
What would I do with it

Skydiving
I went rocky mountain climbing
I went two point seven seconds on a bull named Fu Man Chu
And man I loved deeper
And I spoke sweeter
And I watched an eagle as it was flyin'
And he said some day I hope you get the chance
To live like you were dyin'

I "get"that song. I try to live like that with TJ. Every day cherish, make special memory. I'm not always successful, but I try. Life is what we make of it. If you get lemons, make lemonade.

Positive thoughts are the only thing that gets you through some of this. I've seen nightmarish images, all in the name of medicine. Some have helped, others you wonder.

Life can change in a blink, ask anyone who has ever been in an accident or gotten a "phone call" you know the one you never want to receive. Live your life right and no regrets, Love as much as you can, and if you have kids, hug them often. You'll be happier for it.

The tired day went better than expected

With the way I was feeling this morning I thought today would be a downer, I was wrong. We had a good day. We got out of the house and found some excavators to watch. They were supposed to be at our house digging our sewer tap in, but they didn't make it.

TJ's med's all went well and he ate good too, not a bunch of junk. That always makes the medicine and my day better. No diarrhea, no vomit, all good. Tomorrow is a Bactrim day. He hates this medicine and has been known to gag and get sick with it. I strategically dose it. Hopefully I can get it out of the way in the AM so the rest of the day is easy. We'll see how it goes.

The excavator is supposed to be at our house tomorrow. I've got to go up and pay the man and let him in our garage to get stuff. Rumor has it he's going to allow TJ up on his lap to let him "drive" with him. That sounds great doesn't it? You know what's going through my mind? Oh My God, has he been sick lately, did he wash his hands, how many other peopl have used the controls on that machine... these aren't normal thoughts are they? I know they aren't, but I can't help it. We've got to be such germaphobes.

Anti-rejection meds are immuno-suppressants, those drugs significantly affect the immune system. He is highly susceptible to everything and anything. Having him on a strangers lap does not excite me. Who knows wht germs this man is carrying. I know he's doing a nice thing, I know TJ's going to love it, that's why I'm going to let him do it. I'll have the sanitizer on the ready. It's the best we can do.

I need to get pictures while he's up on it, I hope I get some cute ones. I'm wanting to do a letter for his anniversary and include some pics of him, today, healthy. Pictures are an addictive thing, you can never have too many. I love the different effects, the different shots, the artistic, the cute, the emotional. I love pictures.

Tired, sucking on coffee

This is a picture of TJ from the 4th. My Sister in Law took it. This is his latest "smile". If you ask him to smile for the camera, this is what you get. He's too funny.

I'm sucking on coffee this morning. Some days, this is one of them, I swear it's the only thing that actually keeps me going. I'm tired. 1 AM medicine doses Suck! It's why I'm exhausted today. I either stay up or I risk missing a dose. I'm ashamed to admit, I've done that.

Thank God it's only temporary and not a long term thing. I was giving doses at midnight - 2 AM all the time, but lately I've been giving the med early. My body has gotten used to being in bed by midnight.

Unfortunately anytime a dose is added into our day it measn I have to stay up and give a late dose of something. Last night was one of those nights. This morning I'm dragging.

I walked last night and pushed TJ in his stroller. I really walked, like sweat my ass off and was HOT! I am mean hot, you know that inner radiating heat that comes off you when you're really working. That was me. I feel good today, except for being tired. I have to try and get up there again today and do a double lap. I'm afraid I'm going to die trying. There are some monster hills.

Transplant games coming up. Getting nervous about being at the right places at the right times.

One of those days

I knew after the foods he ate on the fourth that we'd eventually pay the price. He's been sick 2 days in a row now. He's cranky and all he wants to do is suck on a bottle, which doesn't help his belly one little bit. When I try to tell him this he just freaks out, 2 year olds!

I'm hoping tomorrow will get us back on track. I struggle so much sometimes on what to feed him, what he'll ea, what he wants... Lately all he wants is Ice Cream for breakfast, I just can't do it so our day starts out bad and just carries on from there. I hate that I get so frustrated. I end up yelling at him ,which again, doesn't help matters.


I just don't know how other mothers do it. I swear I'm going crazy some days. I wish I had more patience, I wish I was better organize, I wish I had a place to escape to sometimes. Today was one of those days.

I used to imagine my life, I used to be able to plan my life. Now I respond to my child day in and day out. I judge medicine timing by how he's acting, I decide food and meals by how he's feeling, I base my days and weeks completely on him. I never imagined I would be so out of control of my own life. I used to plan, plan, plan. Now my best laid plans go to hell in a handbasket by 10AM if he's not eating well or screaming for something I don't have.

I'm tired, I'm going to bed. Tomorrow is a new day, it will all be better in the morning, I hope. Hopefully I'm not cleaning up poop or puke at 4 AM. That always sucks.

What a different 4th of July

Last year was such a sad 4th of July. We were in ICU Praying to God to please spare our child and allow him to stay with us. This year we are praying to God in gratitude and love.

TJ had a great 4th of July. What a difference from last year. We went to parades, had picnic, he got to play with his cousin, and set off a TON of fireworks. We were all celebrating TJ and his health. TJ didn't quite understand the significance of all of it. He was more focused on getting the candy from the parade.

I can tell you all day I kept thinking back to last year. I've been doing that a lot lately. Can't help it. The joy I feel is overwhelming. The fear I still feel is overwhelming. I 've been so worried for him and about his health for so long, it's like that's all I know. I keep wanting to believe we're going to be OK, but really I don't know that. Every other time I started to think that way something has crept up and nailed us. I almost feel like it jinxes us!

We are getting geared up for the Transplant Games. I don't really know what he's going to do. He may refuse to throw the ball, he may refuse to run. Who knows, he's 2.


I'm hoping to meet up with some other families. Maybe they can help put my mind at ease. The doctors and nurses at our last clinic visit were so thrilled to see TJ doing so well. I will eventually believe it too. I want to, just fearful.

We still have a ton of fireworks to set off and my husband is already talking about next year. Men! They are too funny. I have a feeling 4ht of July may become one of "our Holidays" you know the one that you are known to all your friends and family for. It falls so close to his transplant anniversary, it almost seems natural that it should.

Today, I'm tired. I need to go and walk with him, try to jog a bit. Right now he's camped out sleeping. Poor kid is still wiped out. He was up late last night and it was a busy hectic day yesterday. I love it!