The reality of living with a chronically diseased person...

Tonight I had a very tough conversation with Taevy, our 6 year old daughter. Since I got home from Ghana Taevy has wanted a lot of cuddle time with me. I assumed it was a competition thing--making sure that Bright didn't "take" her mommy away. I think I've done a pretty good job with it all, making sure that all of the kids get their fair share of lap time with me. But for Taevy it has gotten worse the last couple of days. She seems totally fine with Bright (really) so the whole thing has been hard to figure out. Until tonight.

Eric was in doing a dialysis treatment (which takes about 40 minutes) and it was close to Taevy's bedtime. She was cuddling me but complained that she wouldn't get to cuddle daddy before she went to bed because he was doing a treatment. I told her to go on into the bedroom and ask Eric for a cuddle. She was gone for about 5 minutes then came out and burst into tears.

"What's wrong honey?"
"I wish daddy wasn't on dialysis. He can't cuddle me any more."

"I don't want him to have a tube in his belly and I don't want his blood sugar to get low! His blood sugar got low when you were in Ghana and it made me cry I was so scared Mommy."

Come to find out, Eric had in fact tried to cuddle Taevy, but right now that consists of her sitting further down on his lap, basically on his knee. This isn't a cuddle in Taevy's book, and the frustration of it all just got to her. She went on...

"I'm afraid daddy is going to die and leave us Mommy. I don't want him to die. I don't want everybody to be sad if he dies. I will miss him too much."

I haven't ever gone down the "What if daddy dies" road with Taevy. She's grown up seeing chronic disease close up and personal. She doesn't know what it is NOT to have a daddy that gets low blood sugars or has to take lots of pills so his heart keeps working. Taevy thinks nothing of helping out by emptying a dialysis bag, or playing with her daddy's blood pressure cuff. She recognizes when Eric's sugar is low and knows exactly what to get him to eat. This is just part of her "normal." But daddy not being able to pick her up (20 lb limit for lifting), or wrestle with her, or cuddle her tight against his chest--this is not normal--this is not daddy.

My dad died from chronic lung disease after a several year long battle. He died a week before I left for college. I can identify with Taevy's fears. And I can identify with grieving for the daddy that WAS and reconciling it with the daddy that IS. I grew up with my daddy playing guitar and singing silly songs to me. He was a runner and I thought he was so strong! When he got sick he could no longer sing, and didn't have the energy to play guitar. He could barely walk, let alone run. It hurt him too bad for me to sit on his lap much. I missed my "old" daddy and I worried about the "new" daddy's health constantly.

The worst thing is that nobody would talk to me about the fact that he COULD die. Nobody was willing to help me prepare for that possibilty (not that you can ever really prepare). I hated that. I felt like I was being lied to. Every instinct in me said that he could die, but nobody would be honest with me about it. It made me question myself--like I must be sick to think about such a thing and want/need to talk about it with somebody. I can't do that to Taevy (or any of our kids).

So tonight I had the sad duty of talking to my 6 year old for the first time about the possibility of her father's death. Fun, huh? I told her that I didn't think daddy was going to die, and that the doctor's didn't think daddy was going to die, but if he did die WE WOULD BE OKAY. I told her about how it felt to lose my dad, and what it was like to move forward from there. I told her about the memories, and smells, and tastes, and feelings that live on in your soul when you lose someone. I reminded her that our time on earth is short, and our time in eternity with our dads would be forever long.

This is a post that I'm not sure I should post. I don't want people to think that our family is all about sickness and possible death. It's not. The medical stuff just feels pretty normal for us most of the time. But there are bad moments, and bad days, and I guess I just want to share about that part of it as well.

So I guess we know now why Taevy has needed so much more lap time lately. She's using me to try to make up for the lap time deficit she has with her daddy right now. Poor baby. I was relating it all to Bright and me being gone for so long when in fact the timing was such that Eric started dialysis just as I left for Ghana. It was about Eric starting dialysis.

Anita

P.S. Please know that Eric and I have a plan for if he should ever pass prematurely. There's enough "room" in the plan for four kids. =-)