Feeling Stagnant

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Our house is pretty much done, we've been moving little things in and switching over our address. It looks amazing, Randy really has done an amazing job.

There are so many things that I feel are up in limbo until we are actually finished. My job for one, my life for another, even TJ's life. There are things I find myself daily saying, when we get into our new house "____" will be different. I've been saying this all summer.

Where we've been just isn't big enough or allow us the living set up we need. TJ has no where to run or play in the house, and outside the yard isn't the best for a toddler.

TJ's been doing OK lately. Still having the poop issues, but that seems to be the story of our lives. They said that this is sometimes a problem with transplant kids, I would never have guessed.

We go for blood work again on tomorrow. Hopefully some things have improved, I'll feel better.

Again a reason why I don't want to start anything new, if TJ gets sick again I'll just have to stop. So much of my emotional state lies with his blood work. If any numbers are off my life spins for a few days. every little fart, cough, and burp is analyzed and I am all touchy about everything.

So there's a ton of things I need to be doing, I just am having a hard time finding my motivation. It's like I'm stuck in mud and can't get any momentum.

I'm trying to get motivated to clean... so far it's not working.

Why do I do this to myself?

So TJ has been doing very well lately. I'm still juggling foods and meds, but overall he's doing well.

Why do I google Toddler Heart Transplant? Why do I torment myself? Everything I read tells a sad story of sick children who will have miserable lives. That's soooo not what I want to read.

I still want to believe and live in the fantasy that nothing is the matter, everything is normal. The truth is, nothing will ever be normal again.

I'm struggling with health insurance right now. They've raised our rates. Now I need to figure out how to afford this crappy coverage or find other coverage that won't "pre-Existing" condition him.

I worry about his medicaid. We are so dependent on it. THANK GOD we have it. I'm so terrified there will come a day that we won't be able to afford his medicine. Our insurance sucks that bad.


I googled one other time when TJ was first diagnosed with EBV, I wanted to read about that. No, I guess I really didn't. That was when I realized we'd be dealing with a much worse issue, PTLD. and boy did we deal with that. Of course if you believe what you read on the internet, no one ever survives PTLD. Again. why do I do this?

I'm stressed over our finances. I have to get back to work. There are so many things that I've got to worry about, my head aches. I just want to run and hide. THe worst being, if I make a bad decision, TJ is effected more than us.

I need to go to sleep, morning always brings about a change for me. I'll feel better.

A tired memory

This exact time last year we were going back to see TJ for the first time after his heart transplant. I gotta tell you. I still can't believe all that has happened. I swear I feel like my life got traded out. This wasn't supposed to be, but at the same time it is.

So many emotions have gone on in me over the last 48 hours. Add PMS to the mixture and I'm a walking nerve.

Tonight we celebrated. I can't stop thinking about our donor family. They didn't celebrate.

I'm tired. I'll need to go to bed here fast. It's funny how your subconscious protects you. Usually I'm a late night blogger. The last few nights I can't keep my eyes open. I think it's my subconscious way of protecting myself. If I'm sleeping I can't dwell on things.

SO on that note, I'm to bed. I will post more on this.

Sometimes you've got to rest

We were supposed to be up early to make it to a 5K this morning. It was part of the Transplant Games. We didn't make it. It was a harsh night with TJ and I decided at 5AM that he really needed to sleep, not get drug off to a race that really doesn't mean a thing to him.

He's missing Randy, so am I but we've got to get this house done. TJ doesn't understand that Daddy needs to work. He just knows he misses him and wants to see him.

Last night Randy didn't make it home before TJ had to go to bed. Now bed times have begun to be rough for us anyways, but last without Daddy to hug... F O R G E T I T ! ! !

We tried to call him, but guess what, no answer. Leaving a message wasn't going to cut it either. TJ wanted his Daddy now.

I ended up putting him in the car and starting off for our house, this was per TJ's request. He needed to hug Daddy, nothing else was going to do it. He flipped for 45 minutes before I just said eff it, we'll go find him, and into the car we went.

I thought at least the ride will put him to sleep. Nope, this kid was so excited to be going to find his daddy he jabbered the whole time. We eneded up passing Randy his way home so I turned around.

We walked in to Daddy in the kitchen and this kid just melts on him. He misses his Daddy.

He didn't sleep well. I thought all that crying would've put him out, nope. He fell asleep around 11:30, was back up at 1:00 AM, needing to see Daddy, 2:00 AM and one last time at 2:30AM. It was at that point I kinda knew we weren't going to make it to the race. WHen my alarm went off at 5:00 AM, I said the heck with it, my child needs rest. I couldn't even imagine what he would've been like today if we had got him up.

So tomorrow is Track & Field. We need ot be at CMU at 8:45 AM. Hopefully he'll have fun. Hopefully we'll have fun. Hopefully it won't be to hot & humid. Hopefully he won't get sick.

Heart Mother

This is from Shannon Kaiser. Her beautiful daughter has many chronic issues, their life is a daily battle. She speaks true and from the heart. I read these words, today of all days and just cried.

Last year on July 11, TJ received his Berlin Heart. It was a turning point for him. It was the beginning of his recovery.

I'm sharing her words, I hope she doesn't mind. I've made some changes to fit our situation.


One day my world came crashing down, I'll never be the same..
They told me that my child was sick.. I thought, am I to blame?
I don't think I can handle this... I'm really not that strong..
It seemed my heart was breaking.. As, I'd loved him for so long.
I will not give up on this child.. despite your best "advice"..
I will give my child a chance.. No matter what the price..
And I will learn all that I need.. to help my child to thrive...
Yes, even a Tracheostomy.. My child will survive!

And he'll need an experimental heart? And we will need to wait?
Alright God I can do this.. I will not curse our fate.
Night time screams, he wakes me often, It serves as my reminder..
How many parents would welcome that sound? Tomorrow Lord, I will be kinder.
Another angel earns their wings.. and I run to my sleeping child's bed..
I watch him then, for quite awhile.. (I bend down and kiss his head)
Then I cry for the parent's whose lives have been broken.. And I look to You wondering why?
Oh Lord, I just can't know your ways.. No matter how I try.

And yet, I trust You hold his life.. (and guide us through each day)
My mind says savor each moment he's here..But my heart whispers,"Please let him stay".
From... pacing the Intensive Care waiting rooms... to sitting by his hospital bed...
From... wishing for a good nights sleep.. to learning every med...
From... wondering will he be alright? to watching him reach out his hands..
with every smile, my heart just melts.. (despite life's harsh demands)
For all who see that faded line.. I look to them and smile..
You see my child is loved so much.. I would face any trial...

That same scar I trace with my finger.. (It's the door to his beautiful heart)
You must have known how much I'd love him.. (Just as You loved him right from the start)
A heart mom is always a heart mom.. (wise beyond all of her years)
And for those who have angels in heaven.. Our hearts share in all of your tears..
I will always remember.. You chose me for him (and no other)
And I'll always embrace that beautiful day.. When I became a "heart mother".