Wednesday, March 25, 2015

Maintenance Divorce

A friend who's daughter was in maintenance for ALL warned me that maintenance wouldn't be what we expected. "It's a LOT better than chemo," she said, referring to the first year of treatment, "but it's still not normal life."

I had no idea how true her words would be. We were oscillating between "normal" and "hospital" life in early January when Grace made it to maintenance. Several weeks later she was back to preschool, with very few hospital visits and we were loving having life together as a family again. She came out of last year with only her GI nerve-endings destroyed (nueropathy) but otherwise no long term effects from the chemo that we know of. Life was nearly normal and it seemed like we had woke up out of a bad dream.

She was so thrilled to return to preschool. Little Miss Independent started preschool at age 3.5 and never so much as looked back for kiss or hug her first day, and it was the same when she returned nearly a year later. Several weeks went past and Grace was as happy as could be.

Until the day she had her first panic attack. Looking back we think it was because her teacher was out sick for two weeks and a substitute came in. It was a familiar aide, but we think the disruption was too much. Every morning was filled with tears and panic and fear for three weeks . Every night she was fretting over the next day, even though she only went to class three times a week. The fear of being afraid had her on edge every moment.

We finally worked through that. We talked a lot, prayed a lot, and went to the playground a lot to try to build her confidence mastering skills like climbing and slides. Finally Grace was able to go to school with a few minimal tears that were quickly dried after a hug from her regular teacher.

Then it began at home. "I hate you!" never sounds worse than out of the mouth of a five year old. "I'll break all the things you like! I'll hit you! You hate me, don't you?" I was literally reeling at the intensity of her emotions and the sudden onset. Within a week I was hearing this several times a day from my little girl and I had no idea why- no steroids, no hospital time, no new changes.

So you can imagine when I was up at four in the morning that I was praying like I've never prayed before. I prayed for wisdom and restoration for my relationship with my daughter. My whole soul ached. And God gave me answers.

I had been so eager to return to normal life. I was trying to prepare her for starting kindergarten this fall. I was enforcing rules again, expecting her to work as a team member in the family again, having my own personal time again. God showed me I did too much, too fast.

Before she started school again she was at home with me twice a week while her brother was in preschool. She also stayed home from church on Sundays and got one-on-one time from a parent while the other was at church. She also got lots of personal time during the many hospital visits. Within a very short time theses all went away. To me, life went back to normal. To her, hospital life was the only normal she could remember.

She took it as if I had divorced her. She was a scorned lover trying to act out feelings too deep for a five-year-old to understand. She didn't have skills to say, "I miss just being with mommy." When I realized this my heart broke. I was so sad for my girl and finally understood what she was dealing with.

So I slowed things down. We spent Sunday morning doing girl-time by painting our nails and watching cartoons. I've been trying hard to play with her more, even if it means I'm doing less laundry and dishes. I'm spending more time doing our nightly routine, singing and giving her foot massages, just like I did every night in the hospital.

Conversely, I'm upholding strict consequences for talking rudely without remorse. She had a night when a babysitter came over to watch her while her brother got to go to Grandma's for dinner. We're teaching her that she can control her anger and that if she can't be safe with her words all the time than she can't be around Grandma (or others who are super-duper fun) until she's had more practice. She did great with the sitter and was able to have a special date with Grandma the next day.

Every time she threatens to lose her cool we remind her that she can practice with the babysitter again if she needs. That gets her attention enough for her to think before she talks. She knows it's ok to make mistakes as long as she apologizes, stops the bad action, and tries to make it right. She's still making mistakes, only she's learning how to vent her anger without hurting people. She's learning to pray for help when she feels out of control. She's learning she's smart enough to find solutions and that she's stronger than her emotions. She's learning that Gracie is a pretty amazing kid.

I'll still be actively working to help her ease into her new life. I'll be looking for ways to find one-on-one time with her. I'm giving her more random kisses, more random hugs, more secret smiles that let her know I think she's fantastic. I'm praying that the consistency of my love will help her through the rough transitions and that slowly she'll need less of me, though not less of my love.


  1. Your iwisdom, experiences and insights are going to make an incredibly helpful book for other parents-- when this long difficult journey is over, and on that blessed day when life is actually truly normal again! Our hearts are with you all, and many prayers for continued strength. Hugs and love.