I've always struggled when people say things like, "We've been so blessed" or "You won't be given anything that you can't handle." These ideas that I specifically have been chosen to experience certain things -- be them good or bad -- just doesn't make sense to me.
What does make sense to me is a connectedness among all of us that permeates the pain and joy. I feel that. I understand that. That we are all one in a very literal way. Our experiences felt and shared. The constructs we use can separate us and make us feel different and alone or connected and part of something bigger.
These are the things I have been calling on this month.
For one month now we have been challenged with a old part of my daughter that had swelled and pushed out more rational, calmer pieces. One week ago we walked into the pediatrician's office at a loss for what to do. For three weeks we'd been dealing with worsening behavior that had kept her home from school even before the surgery happened. We'd already tried the ER. They denied she was dehydrated even though she'd been peeing once a day for three days. They said her behavior was probably psychosis induced by Tamiflu, that she shouldn't have been given (and actually had probably thrown up). Without any other option, Paul called in desperation to the pediatrician and she blocked off three appointment slots for us to figure out what to do.
I am going to buy our pediatrician a new car.
What she did was save me. After listening to the whole story, she understood we needed immediate help. She called the admitting doctor at Dell Children's Hospital and got Kate a room for hydration and respite. I cried in relief when she told me. The next three days Kate took her pain meds, had an IV, and ate -- things she would not do at home. Even though the tantrums continued and she had to be restrained by the nurses and sedated, we were no longer alone in managing them. She was sleeping more than four hours a night. WE were sleeping more than four hours a night.
Our discharge plan included a better understanding that this is not new. This is a very old problem. Upon reflection, we realized each time we experienced this we thought we had "solved it." That it was over. Every time it's been some combination of sensory sensitivities mixed with stress and lack of sleep. Voila! Uncontrollable rages.
She's so helpless in it. Every day we reassure her that we love her and aren't mad. That we know she's trying her best.
Yesterday she told me, "Mommy there are two parts of me. There's a part that wants help calming down, and there's a part that wants to kick and hurt you."
We have a plan. It's not perfect, but it's a plan. I can cling to a plan as though it's a wizard sent with a magic wand. I become ferociously optimistic and dedicated when given a plan and told what to do. I'm a very good soldier. Hopefully that will last until we get this situation calmed a bit.
The thing that has really gotten me through though is the help from my community. I have been overwhelmed and my heart has been filled by the support I am getting. Emails and texts from people checking in, meals brought by, cards. My dad took a week off of work so after two weeks off I could actually go back to work.
That is what is sustaining me right now. That connectedness. I feel the support and love. Even if there isn't understanding of the experience, there's understanding of the suffering, and that's all I need. That's all we all need. To hear someone say, "This is so incredibly hard." I am so grateful for these people who love me. I am running on their love.
