Friday, June 27, 2008

What is normal?

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.

Tuesday, June 24, 2008

and the Thunder Rolls

We had some wicked storms come through last night. Wind blowing and lightening everywhere. There were times the thunder just rumbled and rumbled. It was a little unnerving. I kept looking out and around for a tornado or funnel cloud. It was that bad.

My big fear has been a bad storm comes through and we are left without electric or worse. I'm not worried about us surviving this, I'm worried about how I care for my son in this situation. Many of his meds require refrigeration, no electric for an extended period of time is not a good thing. If we have to evacuate I need to be sure I can grab all his meds quickly. He can't miss doses of his Immunosupressants. Missing doses will allow him to start rejecting and that can happen within a day or two. It doesn't take long.

So I've decided I need to have panic bags. One that is refrigerator one that is not. I'm compiling a list of everything I need to have in these bags or at least within an arms length of the bag.

Last night as soon as I thought it was getting bad, I pulled out our soft cooler and grabbed a cooler pack. I gathered all his cold meds and room temp meds and threw them in. Added a couple bottles of water and a clean bottle for him. I knew this wasn't a big deal, but if things got bad, I needed to know I had some essentials for a couple hours. I had a flashlight and his blankie and puppy too.

I know to some people this may sound extreme, but I gotta say the fear of my son not having life saving meds is a terrifying thought. What would we do? He has to have these meds, no questions, no conversation, period.

So you'll see on the side here, I've started to compile my lists of must haves.

Sunday, June 22, 2008

Oh My God he just said what!

I always hear parents talk about the things their kids say in public. THere are shows about Kids saying the Darnedest things, it always happens.

Well, it happened for the first time to me. TJ & I were grocery shopping we got to the checkout which is really his problem spot. He likes to grab at anything, magazines, candy, the coolers, anything.

I tried to strategically place him and told him not to touch anything, I'd been so proud of how good he'd been, please don't make me mad. Sure enough I no sooner put 2 things on the belt and he's got magazines off the rack and hanging out of his hands. This is my luck, they rip and now I'm buying magazines, they weren't even good ones!

So I take them from him replace them on the shelf and sternly tell him he is disobeying and if he continues he will receive a punishment when we get home.

He proceeds to lean up and start yelling, "Beat my Butt Mommy, Beat my Butt" "punishment, punishment", "Beat my Butt Mommy". OK, now I don't beat his butt, in fact his usual punishment is 2 - 3 minutes on a chair for time out. But I have been known to threaten.

So I've got people looking at us and I'm thinking Great, I'm gonna be met at the door by security. TJ's laughing up in the front of the buggy, he's thinking he's so funny and really, he is. He's kinda chanting signing his phrases.

I'm sure this is mild in comparison with what some parents go through, I'm sure I'l go through worse, but it sure makes you aware of what you're saying.

I've got a mouth like a truck driver. I make my husband do double take when my mouth gets lit. I can curse and string it together, kinda like art. It's a beautiful thing to some people. Knowing his grasp on the english language, I'm going to really have to watch the mouth. I don't want my next moment to involve the F--- word. That just isn't cute coming from a 2 year old.

Saturday, June 21, 2008

Days like this remind me

A young girl that TJ got to know in the hospital is back in the hospital with a possible serious case of rejection. As I read the journal update from her parents I just cried. The fears of transplant can be incapacitating at times.

I cried because this poor innoent child was going to have to fight for her life, again. I've seen it and lived it twice now. It is an experience I will proabably have to face again. SUch is the life in transplant, at least in our transplant.

Yesterday I was freaking out because TJ was drinking too much from a bottle and too much of the Gatorade G2. Today as I started my day off with this terribel news it hit me like a ton of bricks. What the hell was I freaking out about. TJ is home with us and we were actually being normal. This is cause for celebration and love, not frustration and yelling.

I can't explain how my stomach rolls when I think the other family's situation. I'm so thankful it isn't us, then I feel guilty for thinking such an awful thought. I sit here and I picture Sue sitting at the hospital, it's almost midnight, almost time for vital checks.

Days like this remind me how lucky we've been, but it also reminds me how fragile our life really is. It reminds me how 1 phone call can change our lives forever and how we can endure anything for our children.

I pray the sweet Lily recovers and that this isn't a serious bout of rejection. I pray for my own son's health and pray that he stays healthy enough to remain at home with us.

Saturday, June 7, 2008

Let's try this out and see

Not sure what I'm going to post here. I hope it will be mostly uplifting but I can't make any promises. I've been journaling on my son's COTA pages for almost a year, I enjoy it but I feel a bit censored there.

So here I am. I've been saying I want to write a book about this past year. I may start some of those thoughts here.

Well, here goes. The Everchanging Life of a Transplant Mom.