August 20, 2014

Some days I'm strong. Some days I'm not.

There's been a lot going on around here. I've been struggling these past few weeks and it's starting to show. Tonight the boys saw me breakdown. Well more like they eaves dropped as I cried to David that I don't want to get sicker and that I can't do this by myself. Dramatic much? Yea. It was a rough night. But it's been on our minds a lot more than usual.  I can feel myself getting weaker. Most days I can't keep my food down or I just plain forget to eat.  Taking a shower is exhasting. I can't watch TV without falling asleep.  I've read the same book twice but could not tell you what it's about. Ive locked myself out of the house and my wort fear of all finally came true. I left the stove on. But this is my life. All we can do is enjoy the good days and make it through the bad.  It's time for some planning and rethinking.  New schedules and responsibilities. And I'm not ready for any of it. But if I want to get better I have to get sicker. 

Yesterday in the car, completely out of the blue my oldest asks "Mom when are you going to the hospital?"  October I told him. My next appointment is then. "No Mom, when are you going to get your new liver?"

Oh boy! It's been a while since we have had a talk about this. But I've always been honest and straightforward with him. So I reminded him that it wasn't my turn yet and that I was still healthy enough to not get one yet.  And then the little one had to add his own thoughts. "Yeah"  he said. "Not until she gets sicker and so sick she's almost dead!" 

Well hell. The one who I thought still had no idea I was even sick sure has something to say. But what could I say to that. So I agreed. I told them it was gonna be a long road. Anthony asked why we couldn't just find one now and thankfully David stepped in and reminded him that's why we advocate for a organ donation. That's why it's important to register as a donor and let our friends and family know our wishes. 

They let that sit for a minute before asking David to turn the radio back up. 

Anthony has known from the very beginning that I am sick. We have had many talks about the liver and he asks questions very openly. Alexander has never really taken note of it. Sometimes when he jumps on my I will tell him he has to be careful because I hurt but he has never asked much about it.  He does listen very carefully when Anthony and I talk about livers and does know that I need a new one though.  He asked once if he needed a new one. And when I told him his was perfect he offered to give it to me.  My sweet boy.  He has already given me enough though. If it weren't for him I would have never even know I was sick until it was to late!

I hope I'm doing right by being so open about this all. Before I even talked to Anthony about it the first time I thought long and hard about it.  I know he is a worrier. He would hound me until I told him the truth and nothing but, so I did.  Alexander I think I will be a little more cautious with. His little heart was about broken when I told him I would not have his liver. He is a giver.  And I know he will take it a lot harder and personally.  He will worry more and check on me elven more than he already does. And I'm just not ready to put that on his shoulders. Not any more than he is to carry it.  Ofcourse I will continue to answer every question as honest as I can. But I will also hold myself back a little. Just for now anyways. 

Have you had to explain medical problems to your children?  How open are you about it?  Do they know about things like cancer and other illnesses?  And please if you haven't already, register to be an organ donor. 

1 comment :

  1. I can so sympathize with your post! Abby has definitely gotten to the age where she is more aware of my illnesses. A few days ago we were in the car she asked me if my doctors could find a way that I could run again so we coukd run outside together and also asked if I would ever have to stay in the hospital again. Definitely hurt my heart. The absolute worst moment probably of my life was one night that she was upset with me for making her pick up her toys on her own and she said that I never did anything anyways because I was always sick. I think I locked myself in the bathroom and cried for hours (probaby days). I know she was just speaking out of 5 year old attitude and defiance but I don't think I have ever hurt more than I did in that moment. Dealing with the guilt of not feeling like a good enough parent or spouse is definitely one of the biggest struggles I have with living with a chronic illness and it is hard to figure out how much to tell your child about your illness or to explain it to them in a eay that they can understand. Abby definitely asks more questions now and has actually come to a couple appointments with me to try to answer some of her questions without overwhelming or scaring her. It is definitely a lot to balance and I am so, so thankful to be connected to other moms going through similar journeys for encouragement and support and not feel so alone.