Thursday, December 20, 2012

I'll Help You Cry



Larnell Harris has a song that came on randomly as I looked for another recently, called I’ll help you cry. A small group that meets at my daughter’s school came over recently to give Kiana some Christmas presents, and some new plates (we’d learned to live with a hodge podge of them). I sat there overjoyed to see Kiana bounce with joy but also shortly after they left and after I put her to bed, I did the same thing I’ve done every time everyone’s helped through this, I cried like most of the times disappointed I couldn’t do it all alone. Sitting here working with Livestrong with people who had small children and whose prognosis like mine sometimes feels like there’s more question marks than exclamation points, who have taken time off or taken these type of insurance items to get more time with their kids, they are few of the people who get it .

The group asked in the end if there was anything they could pray for and I prayed that the pattern of having less medical appointments holds, that I don’t get found collapsed again. I don’t know them well so I thought it might be too much to let them in on the whole custody challenge that’s going on. I joked with them that they pray that I can turn Kiana to Catholicism just so she becomes a nun.  The next day I sat with their leader as we found a bed they arranged for someone to Kiana, she finally outgrew the one in the Livestrong video and so now moved up to a twin size bed. She hasn’t seen it yet but I hope she gets excited on the growing up steps of life.

Today was her first performance at school with Kindegarten singing some Christmas music and they asked us parents to sit in the back but that there would be plenty of chances to take pictures afterwards. Reflecting the recent incident at Connecticut the principal said hug them as much as you want after and can and she broke down crying herself, clearly recognizing that none of life should be taken granted even without a disease. I was proud of Kiana’s mom that unlike the first day of kindergarten and mother’s day weekend, she was there, taking pictures and video. I sat back as best as I could and after she left I hung out and suffice it to say, I was the last parent to leave. I am going to have lunch with her today, something I do often, though I do try to limit it so she gets some social time, that unique reality of being an only child, something I can’t really relate to. Then she’s gone for a few days, the first time I’ll not share a Christmas day with her so we opened the presents from the group (and me) today and well, somehow she didn’t seem to mind opening them early.

Waiting for an angel is still the most listened song in my itunes but this week I’ve been listening to I’ll help you cry. Those have been the good people in this journey… the lyrics to that song are somehow comforting… the ulti crowd that watched me cry as they handed me a check to help with the medical bills, Todd, the executor of my will who watched me cry over a brownie when I finally decided to get this surgery. What I talked to him the most about that night was making sure that  Kiana and her mother were provided for, the minister who watched me cry as I got fired for not having the memory I once did. I had talked to some coworkers and I started acknowledging to more people the deficits that I’d acknowledged to Todd, my Stephen ministries counselor, doctors and a few friends and then they finally started coming out in this blog. This county retirement thing takes care of that now, a semi life insurance. This long term insurance, which finally is about to get started after the waiting period December 25th, will pay the bills (I keep calling it retirement and my neighbor gave me a hard time about it saying look you’re someone with medical issues not actually retired, clearly not absorbing that this is how I’ve learned to accept it). Somehow calling it retirement when you are doubting you will make forty makes breathing easier. Kiana had her first eye appointment and her eyes are uneven with one having great vision and the other one not having so great so she’s going to wear an eyepatch during the holidays because the doc thinks that the brain has learned to shut off the other eye so the glasses won’t help until she learns to focus on something while blinding the things that were relatively healthy… She’s excited about being a pirate and I’m grateful that this while thing has made me focus on some things I was blind to.

I am a proud stubborn man and anyone who thinks it doesn’t break some of your pride to go to a workout and beat everyone there or go to a race, get a trophy and then go hey can someone give me a ride to and from home doesn’t get it. The custody thing will be settled in due time and I hope a judge will see that while there are some issues, I’ve done all I can to both protect my daughter from this, make her aware and spend time with her and doesn’t remove that from me.

But I cried that night when gifts for Kiana were left here…  and fortunately there was someone who came over that night from my running group that night who has been giving me rides a few times. She gave me rides to some recent parties and we’ve ran a few times together. And she just hugged me as I cried from pride of having someone else who barely knew us give Kiana presents. My friends hug somehow made me cry more. I am not ready to dive into having my first girlfriend since high school but man that moment of connection made me think about it. A friend gave me a hard time this week about how I’ve had lots of girlfriends, which I haven’t. There have been some fun times with nice girls but then the MRI went bad or I woke up in an ambulance or there were medical appointments and then it was time to acknowledge that “we’re better off as friends”. I’ve been hanging out with this girl really in the last two months without any appointments and self-aware enough I said look they start again in January and then I’m probably back up to putting my walls to protect me and everyone else from this and I’ll hang out with you less. She blew me off and put the appointment on with my neuro oncologist on her calendar. Gets you thinking…

Larnell Harris song appropriately got made into a video with images from this horrible incident of kindergartners getting shot http://www.youtube.com/watch?v=TaNM8b0GYfE ) I can’t imagine what it must be like to be their parents. We’re supposed to be buried by our children not the other way around and there is nothing more senseless than the death of a child. I’ve helped out now with the cancer communities some which has gotten me to talk to people and when you’re in the cancer and emotions class, people think you’re going to be decent at it. By the grace of the universe, most times I’ve just had to listen, a few times hug someone who was crying. And yet when I’ve cried I’ve tried to do it alone most of the time because like those gifts to Kiana vs me volunteering at places, the latter helps and the other one is tough. Jesus was right that it’s better to give than to receive but I imagine most of us have an easier time with giving than receiving as well.

Larnell sings the following lyrics

I used to think that heartaches were meant to hide,
That it was a sign of strength
To keep it all up inside,
But I found out that healing began
When I let someone in who said...

I'll help you cry.
Lay your head on my shoulder and I
Won't let you shed your tears alone.
Take my hand - only say the word
And I'll stay right here by your side.
Right by your side!
I have no words to ease the pain...
I don't know how it all will end,
And I'm your friend and
I'll help you cry.

Thanks to those who have helped me with that.

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