Slow down Charlie

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When I was a child my Papa was in a serious car accident. My grandmother died and he suffered a major head injury. This trauma left him with significant damage. It took away some of his ability to self regulate so he’d often do things very fast like eating and walking. Because his body couldn’t keep up with is mind he would often hurt himself or make himself sick. His name was Charlie.

 ‘Slow down Charlie’ was something you’d commonly hear members of our family scream out to my Papa. Over time it became an inside joke and something we would say to each other whenever one of us needed to slow down, recharge and refocus.

We have been telling Logan to ‘slow down Charlie’ for the last few days. Thank god she finally listened. We all need the break.

I think mentally Logan’s mind has caught up to what her body has been through. She is resting. We are relieved- rest equals healing right?

Doctor’s have been in to see her today, as they are every day, but today they advised us that they think she may have a minor problem with her swallowing and also her coordination.  Her abilities in her right hand seems to be declining. It is almost similar to someone who has Parkinson disease, shaky and unsteady.

Dr. Steinbok was consulted and he told us not to worry quite yet- pretty standard conversation between doctors and parents of children with cancer. I wonder when is the right time to worry?

We are going to do another MRI tomorrow morning to see what is going on. He thinks there may be more swelling than he originally anticipated and right now it is causing these new deficits. This is ‘best case scenario’. Worst case, this is a complication of surgery and she is now in someway damaged, or paralyzed permanently. 

The decision is keep her on the steroids (which makes her mean and angry Loggie) at a higher dose for few more days. The hope is the swelling will come down and we will see an improvement.

Night time seems to be the worst…I think she tries to be alert and strong all day for her visitors and then when nighttime comes and we are alone she has the freedom to collapse and be honest that she is not feeling well. Her headaches are worse at night and it worries me that she is not eating much. She is tiny and fragile and we worry about sustaining her energy and her weight. She is nauseated and complains about the nausea making it difficult to eat. All day long we suggest food but nothing appeals to her. It is frustrating, it so primal for a mother to feed her child.

I want her to eat and I am trying to encourage her to, but honestly this roller coaster of emotion is making my appetite dimish. There is so much anxiety. 

  The doctors keep telling me to put into perspective that she just did have had major brain surgery. I like everything to happen right now. Maybe I need someone to tell me to “slow down Charlie”

Her incision is healing up remarkably well (Dr. Steinbok is a master) but I also think  the reiki she has been getting from June and Grandma have been helping too.

On that note, I have a story to tell you about Reiki. For those of you who don’t know what it is- basically it is energy/touch healing and Logan loves it.

A lady by the name of June Hope has been committed to helping Loggie with her healing since day one…she has been giving Logan reiki and also teaching Logan how to give it to others. Apparently Logan responds well to Reiki and as such, asks for it regularly. June is considered a master of the technique and tells us that Logan has an innate ability to share this energy with others.

On Thursday night when we were in the ICU only about 4 hours after Loggie had come out of surgery (remember she shouldn’t have even been awake yet)  a little baby only 2 month old kept crying out beside Loggie. The stress of the crying  would cause this little babies heart to beat irregularly which made it seem like she was having a mini heart attack causing her to stop breathing.

We were all very upset as it was but being beside this baby made our situation even more intense. Alarms would go off and people would frantically race around. It was hard to Logan to rest and the situation was making me very uneasy and panicked. During one of the babies attacks, I looked over at Loggie  to comfort her. She had her left hand up in the air. It was full of tubes and she was barely able to hold it up on her own.

I thought she was scared so I asked her what she has doing. In the softest most compassionate voice she told me she was sending that little baby some of her Reiki.

I was speechless and in awe of her…in her weakest moment she was sending that baby her energy even though she had so little to share. 

This kid blows me away. I honestly believe she is so much more than my daughter and her purpose here is huge.

Being her mother is an honor and she is teaching me so much everyday.  

I have cried a lot these past few weeks and I am grateful to have some perspective. I spoke to June about how Logan could be so profound and how at times I feel so weak.

She explained how she saw our relationship.

 “I Imagine you standing in front of the creator and it was your time to come to earth. God was handing our life journeys brain cancer was pulled.  You were next in line. NO way. you said, NO, please I cannot bare the burden of  having such an awful disease in this life. Please choose something else for me. You thought you’d escaped.

Fast forward to years later, and Loggie stood in that very same line up where again the creator issued brain cancer. 

Only instead of fearing it Logan said “no problem, I can handle it”. Her only stipulation was that she needed someone to hold her hand, someone to care for her and be beside her through her struggles. That is why God chose you.”

June’s perspective really struck me. She is right, Logan is such a teacher. She has always show such acceptance and strength for her circumstances and she is here to teach me. I have so much to learn from her, I know that. How I wish now I could have pulled the brain cancer card instead of her. Watching her suffer is heartbreaking but watching her strength is also such an honor. This whole experience is truly bittersweet.

Just over a week ago I started this blog. Today, there is over 300 people that have joined this page to support Logan. Each one of you have joined us on this healing journey and we appreciate all that you are offering to help Logan get better. Thank you.

 

 

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