I'm a Piano Teacher!

I've been saying it but I mean it for real. I have students and I really am a Piano Teacher! I'm not just a Mommy, although that's a great thing to be. I'm not just a wife, although that too is a great thing to be. I'm a Piano Teacher, I'm Lori, and I am finally reconnecting to a piece of me that has been lost.

It's been so long since I've taught. Last December TJ was so sick that I was cancelling at least 1 night every week and we were in the hospital December 18th - 22nd. It didn't leave a lot of time to see students.

So finally after 9 months, I'm finally starting to teach again. My first night was Tuesday and it felt so good. It felt natural and it felt right. I had started questioning if I should pursue teaching again or if I should try to find some retail store to hire me. This left me without a doubt, I am a teacher. I've always felt like a teacher, I've always acted as a teacher, and I'm not turning my back on it.

The last 3 years of my life have been so much about TJ. Even before he was sick my life seemed to revolve around him. WHen he started daycare and I had a full teaching schedule I was happier than I'd been for a while. I had time and I had ME back.

After transplant Daycare became an impossiblity and my life's focus became TJ and making sure I did EVERYTHING to keep him healthy. I couldn't even fathom the thought that I could lose my son. My life was him.

Now he's doing better, he's stronger than he's been in over a year and Randy & I finally feel good about me teaching adn being out of the house.

Can I tell you, driving in my car without the distraction of a 3 year old in the back seat is an experience I haven't had it a while. It was weird. I'm so used to the rear view mirror being adjusted down so I can see him, suddenly I can see my whole back window.

I did experience a slight euphoria of freedom on that drive to my students. It was empowering and freeing. I was able to breathe and relax in a way I haven't in a long time. My Time. I don't have that in my day to day life, unless I stay up until 1 AM to get it. No wonder I'm tired every morning

I teach again tonight and I'm really looking forward to it. It's finally a creative outlet for me. I feel like a bad person because after all TJ's been through I want time away from him, but I also think it is healthy for me to have time away from him. The two of us spend 24/7 with each other, he's sick of me too!

I have a piece of me back. It feels good to reconnect with that piece, it's been missing. Now if we can just get to our house! Our environment and life just doesn't reflect who we are. It's OK to visit that for a while, but it's a strain to live in surroundings that don't fit you. It's been a strain for almost a year now. I will be so happy to have TJ, Randy, my teaching, and a home that belongs to us. I keep saying it's coming, it's coming. One more step...

The new normal?

It's funny how things end up being normal. They aren't the same as they used to be, they may not even be "right", but if it stays the same long enough we accept. We adapt, we move on.

TJ is still doing really well. His LFT's are still high, but funny, I'm not even alarmed anymore. The nurse gives me the blood results and I'm like yeah, yeah, yeah, they've been that high for a month. Whatever.

WHATEVER!!!???!!! Is that really my thought. Yes. Yes, it is really my thought. A month ago I was freaking out, now it's just normal. It amazes how messed up our blood work and tests can be but yet, we feel fine and would never know something was off.

We are having more blood work. Every 3 - 4 days we have to go in and stuck for a vial or 2 of blood. His immuno-suppressant level is off. I think because he's grown so much and because his belly is getting better. Having diarrhea will cause this level to go up, his diarrhea is finally easing up and going away. I think that's causing it to drop.

So in at 8 AM for blood work, TJ LOVES that! Not! I'm hoping the increases they're making in his dose will bring it enough and stabilize so we can go back to just once a week and then maybe back to the 3 weeks. That was nice, I felt like a regular person with a regular kid when we were doing that.



We had a GREAT Weekend, I mean great. TJ's uncle put together a huge fundraiser up in Erie Pa. It was a casino night, black jack, roulette, scratch tickets, Chinese auction... Lots of fun. They talked to a local Band - The M-80's, and they volunteered to play for the event.

Well, not only did The M-80's play, they were pushing the event at all their other gigs. They also were taking up a collection at these other gigs too. The band presented us with a big check, literally a big cardboard check at the beginning of the night and had 2 TV crews there too.

TJ made himself right at home with these men and it warmed my heart to see them taking him under their wings and giving him the time of his life. What would be the time of his life?

He lived it up like a Rock Star!

The band let him up on the stage with them and allowed him to play their instruments with them. It was so good to see TJ doing all of this and enjoying himself so much. I can tell you I now have a very soft spot for those men, they gave TJ a night we never could.

He loved the Drums the most, but took a turn on the guitars and piano too. The piano were 2 stacked keyboards and I'm proud to say he took a second spin on them. He had a really good time and the crowd loved it. I don't know how many pictures of my child are now out there in the world, but I can tell you as he was at the mike and guitars the phones were open and everyone was a clicking.


Drums, that's just what I as a classical pianist wanted my child to take up! *Snort*
Of course this is where the Drum Major in me kicks in and is hooting, Drum Cadences RULE!

Damn Blood Work.

Things have been going so good. TJ has been doing so many things and getting stronger and stronger. We had our clinic visit this past Thursday. I always get nervous leading into these days. In one fail swoop they can take my optimism and change it to gloom.

His heart function looks good and he's gained a ton of weight, which I've been worrying about. They were very happy about the weight. I guess he's been sitting at the same point for a while and should have been gaining.

The only real downer, and it hit me hard, was his blood work. I really hoped it would be better. He's been doing so good. But nope. His LFT's (Liver Function Tests) were elevated, again. i really thought they would've been down. So now we have to consult with the liver docs again.

This is a second round of elevated LFT's for TJ. They don't know if it's the medicine, a virus, or liver damage. Of course any time I hear any little thing my mind jumps off the cliff. I can't even help it. My mind starts spinning worst case scenarios. I never used to do that, I've learned it from this experience. My child just doesn't catch a lot of breaks.

That was Thursday. Friday I spent the day worrying about the docs calling. What were they going to tell me. How bad were things really.

They never called.

Part of me was pissed. I spent the day stressing, it's my kid, why the hell wouldn't they call. The other part of me knows. His numbers really aren't that bad. They aren't going to do anything except maybe some more blood work on Thursday. He's getting blood work done anyways, they may just add some tests.

So the no call isn't a big deal to them. Nothings really going on. So I've gone from stressed and worried to complacent and accepting.

This is TJ's life, it's our life. There are going to be good days. The days can be good enough I can forget what he's gone through, that's amazing.

But there are always going to be appointment days and blood work that brings it all back home again. I don't think I'll ever be relaxed on those days. It's just too easy to have your life blown out of the water. You can go in thinking everything is OK and be told absolutely the opposite and be admitted for tests, treatments, procedures...

I find that as we are moving on from transplant that I'm going through somewhat of a mourning process. I'm mourning the loss of the life I thought we'd have, the life I thought my child would have. It's hard for me to imagine what his life is going to be like. The constant threat of illness is always hovering around him.

I wonder if his transplant will last 20 years, that would be a long time for a heart. That would put him in his early 20's with a new transplant. I wonder if we'll be able to afford a second transplant and if it would be successful. I wonder if he's going to have children or live to have grandchildren. Things I always took for granted, now I can't be sure. It makes me sad.

People say live for the moment, enjoy every second I have with him. Well, that's not good enough. I want a lifetime. I want him to experience everything, I don't want him to have to miss out on anything. He won't be able to play certain sports or engage in certain activities. Close contact is a no no and impact kind of activities aren't recommended. What will he get into, will he be satisfied or will be angry & resentful that he can't do things?

It will be interesting to see how he grows and what he grows into. I just pray that he has a long easy period of health. I've gotten used to the summer and have enjoyed it so much, I want this continue for years! I'm a selfish person, I know.

Therapy is probably in our (my) future. So many things have happened to us that I think it can help us cope and move on. When everything is flying at you, you don't stop and process what is really happening, you hang on and go on autopilot. After, like now, it all comes back to you. It hits you over and over again.

I'm OK. I know sometimes it doesn't always sound like it, but I am. I'm pretty aware of when I'm acting & thinking a little unrationale, I try to laugh about it and wait until my sanity returns. No sudden movements, that's my current motto.

Part of a post from our COTA page

TJ the . . . JUMPING BEAN!!!

Yup, that's right. TJ is finally jumping, both feet off the ground pretending to be a frog jumping.

We've been so through the roof the last 24 hours. It's been something that he's struggled with and been a little behind on. It's strange to have him be behind in physical things because he's such a physical kid. He was always ahead before transplant, 6 months in a bed takes a toll on a body.

So he isn't graceful, and he's no Michael Jordan, but he does get himself up and off the ground. His landing needs some work, you can hear him jumping and landing. I'm thinking that isn't completely normal. He jumped in our kitchen/hallway doorway and Randy was coming up the basement steps, right next to where TJ was. (on the other side of the wall)

Randy was all excited when he looked around the corner, I asked him if he saw TJ jump, he said no, but I heard it. It's a kinda THUD sound.

Who is that person in the mirror?

I know I'm not the only one who has ever had that moment. The one where you "see" yourself in a way you've never seen yourself before.

For me my battle with weight has been ongoing for years, hell, a decade. I won for 3 or 4 years then I got pregnant. Now I have fat in places I've never in my entire life even knew about and a body that reminds me of my 60 year old aunt. *shudder* How did my ass get to look like that? and never mind look, it feels HUGE!

The last month I've been doing well with WeWa and have lost close to 10 pounds, yay me! I know. But this past week has me really at a breaking point.

It's a point I've never been at before. I talk about the physical appearance and the shock the mirror can give you, because everyone can relate to that. For me, I'm having a hard time recognizing who I am period.

I used to know who I was. I was Lori, a creative, in control, fun, exciting, compassionate, live life, kinda person. I liked to meditate, ride horses, play & study piano. I was passionate about teaching and I lived for the thrill of success in my job and my hobbies.

I loved that Lori so much. I'm not that person anymore. I'm not even close to that person anymore and I've realized I'm very sad about it. I'm also very angry about it.

I keep saying that everything is going to be different "when we move," but unfortunately that move day keeps getting pushed further and further away. I feel so stifled and caged I can't explain it. People always say make sure you don't live your life for everyone else, live for you. And I agree so much with that statement. But I feel as though I'm not in control of my life at this moment. Everyone else has way too much power over me. When did that happen? I always had my own power, but I now find myself in the unusual position of feeling weak.

I know these struggles are temporary, they really seem trivial when I stop and think about what TJ & I've gone through over the last year. But they are so real for me. There is a day coming in the near future when I will be living in our new home and I will be teaching again and this will be a memory. I'll wonder why it seemed like a big deal at the time.

I keep promising myself that when we move "Lori" will return. I will surround myself with a life that reflects who I am not with a life of someone who is trying to survive and just get by.

I will have a healthy life that has exercise, good food, meditation time, Lori Time, and FAMILY time. I will once again celebrate the sunrise instead of wishing I could go back to sleep for hours. I will get my body back in shape and lose this fat aunt ass. I will be proud of my appearance and not feel self conscience about being in public with my husband.


I know I'm not the only person in the world to go through all of this. I also know there are good reasons for all of this. My life over the last 3 years has been dramatically changed. From the dropped career, to the huge move, to living with my father, to TJ's illness, my life has changed and I will never be that Lori that I loved so much.

My goal is to have my life reflect me again, whoever ME may be at this point.

I thank God for TJ. He makes me laugh so much through the day. He makes all of this worthwhile. For him I will endure anything. For me I will change to make him proud and be the Mom I want to be.