What is normal? i used to think I knew what it was. I wanted a husband, a couple kids, to be a piano teacher, have a nice but modest home, and ENJOY LIFE! That's normal right?
Not anymore. There are days I feel like I'm sinking, that nothing will ever be right again. if you've ever dealt with a chronic condition, I'm sure you know what I'm talking about. I look around in stores and I see happy families. They are so carefree, they don't even know it. They're rushing around with seemingly important things, but really they're missing life because they've got themselves so wrapped up in supposed business.
I get frustrated, I want to be like that. I wish I could forget, I wish everything could just go back. I still don't fully comprehend that my son will never be 100% healthy again. I still can't believe the list of complications and conditions that we may have to deal with.
I pray that my son will live old enough to be a grandfather, but I don't know if that is realistic. That thought clenches my chest. We always want good and better for our children. I don't know if TJ will ever experience those joys.
Today it kinda struck me again how fragile our lives are. I keep thinking back to a year ago, what was I doing? At midnight, I was probably sitting next to TJ talking to the nurse or brushing his hair off his forehead. I would sit there till 12:30 or 1 AM. I would always be back down again before 6:30 to find out how he did over night. I missed my child terribly.
July 3rd will be a rough day. Once again a momentous day and I'm at the hospital for the anniversary. This time it will be the day we learned tht TJ needed a transplant. I remember these things like they were yesterday.
Who Am I?
- Lori
- I'm a piano teacher, a wife and a SAHM with an amazing child. During the summer of 2007 our once healthy child fought and battled for his life in a way I could never have understood. The result was a Heart Transplant and a new life. This new life isn't always easy or fun. But it makes you thankful for a lot of little things. I'm trying to regain my identity and at the same time build a life and a family.
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TJ & Daddy, June 12, 2008
June 12, 2007 we took TJ to the ER and this whole journey started. This June 12, 2008, we celebrated TJ and his health. These are the loves of my life, TJ & my husband.
TJ & Mommy post tranplant
July 18, 2007 Back in my arms, it has been over a month since I held TJ. He received his new heart on July 16, 2007, this was taken on July 18, 2007. He was a 30 lb newborn. He had no strength and couldn't even hold his head up.
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TJ - June 15, 2007 What happened to my Baby?
Oh My God. How did we get here? I asked that continually. My healthy child was being kept alive with machines and we had no warning. June 12, 2007 we took him to the ER, he suffered a cardiac arrest and nothing would ever be the same again.
TJ with Berlin Heart, finally awake and back with us.
TJ finally is able to be awake and moving, it has been a month since he had his cardiac arrest. Here he is with his Berlin Heart able to play with a balloon.
1 hour before TJ's transplant
We need to occupy some time, Randy, Pap Pap and I sat with TJ, playing with Daddy's cell phone. We knew the team was already at the other hospital, we had 1 hour until they were going to take TJ to the OR. The nerves you feel at this moment as undescribeable. You can't cry, because you don't want to upset your child, but just thinking about what the docs were about to do really unnerved me.
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