Courage for Kennedy – Journal

February 22, 2008

Two Topics

Category: General,Gratitude,Treatment – Melenie – 11:28 pm

Yes, I have two separate things to talk about…oh, where to start…this should be a long one…are they ever short??

Hmmm…Kennedy had language therapy today (lt or slt) and did well despite being tired. Her random “holes” became evident when today her processing was right on! Sometimes not so much but today it was and the “holes” were somewhere else! Her processing you say? Why, yes, I did say that! JR and Kennedy played Slamwich! and Kennedy was right on the money. Visual processing, mind you, but processing none the less. Wow! She was taking names and kicking butt! Then later I gave her what seemed to be a simple instruction and she was totally lost. That’s how things are some times. Sometimes it is just easier to say “coat,” than “Kennedy, get your coat on.” You just never know how things will be that day. Also, when calling Keith tonight, to come to mom’s for dinner (she is just across the driveway, after all), Kennedy remembered to say “Hello, Daddy” first! We have been working diligently on phone manners. Kennedy would often just dive in to what she needed to say (before she forgot) and wouldn’t ask for the right person or even greet them. Now, everytime she calls, no matter who it is, I remind her to say “Hello” first. I’m hoping we have set up a pattern. We’ll have to see what happens the next time she calls someone.

She also had her physical therapy (pt) evaluation with AS. I’ve probably posted the therapists names all along but I have recently become aware that some may not want their names posted in a public forum with so many identifying remarks. If I have done that to anyone, and you don’t like it…please e-mail me and let me know. Let’s see…she appears to be scoring just where we thought she would…below 4 years old to about 4 1/2 years. It is also evident that her reflexes are not returning and may very well never return. Apparently, the pathways between her brain and her lower legs has been severly damaged because they don’t talk well to each other. No point in surgery as they don’t really have anything developed to fix this problem. She has amazing range of motion though! We’re not sure what we are doing right there…ballet maybe?…but we are not going to change anything in that department. She still hyperextends her knees when she walks and her pt is very concerned about that. It is important to protect her knees or the long term effects of walking that way could be devastating…man, I sure wish I had spell check on here! The goals are to get Kennedy to her best and protect her from further damage. So, she was cast for new AFOs (leg braces) which she is just “thrilled” about. At 7 years old, it is hard to comprehend if you can walk, run and dance to your standard why you would need to wear them. Falling is routine enough for her that it is simply not a reason. She’s excited now because they are new again, but we will have to come up with a motivation when that wears off. No night splints though, so that was good. We will be seeing AS for about 8 weeks to work on balance and coordination, so that will be fun. With deficiences in muscle tone, balance and coordination and at least 3 years behind in gross motor skills, riding a bike without training wheels will be impossible for now…at least we thought. AS is looking in to bikes with a lower center of gravity and other assistance to help her…and still look like a normal bike. Please pray for the finances to cover such a bike as I expect it to be way out of our price range. When Kennedy needed a stroller that would fit her, it cost $500!! We LOVE the stroller and are so thankful to the Wheel to Walk Foundation for the generous donation (a little plug here doesn’t hurt)! How we will get a bike I’m not sure…it’s hard enough just to cover her insurance premiums and medical bills alone…and she is no longer receiving chemotherapy!

Ok, topic number 2…I can’t be around cancer families. There…I said it. I feel horribly guilty and ashamed at this realization but I can’t hide it any more. Now, I know that families we have grown to love so much read this and to them, I am truly sorry. It is not personal and I don’t think it will last forever. For now, it is severely anxiety inducing. The secret is out. I know that you may think I am avoiding you…and I am…well, not really you…it is the cancer I can’t hardly face. It hurts me terribly to say it but at the thought of facing anyone’s cancer, I feel very physically ill. I do continue to follow several blogs and pray for all of you every single day, but like Kennedy, I just want it to go away. Not you…just it.

It is my heart’s desire to help families and I know that someday that will be my reality…but not today…and I know that God has something to do with that. I know that I will be of no use to any family where I am at now. I have much work and healing to do first. You see, I am broken. I have been trampled on and beaten down and am simply worn out. God needs to spend some time with me rebuilding before I can reach out. My faith is strong but my spirit is weak. I want a time out. I want some time to regroup and process this journey I have traveled.

It’s like I have been walking and walking and running and climbing and made it to the top of the mountain and it has taken so, so long to get here and while the view is spectacular…just a few lingering clouds that won’t give up…the weather is managable and for the most part, quite pleasant. But my boots are worn clear through and my feet are throbbing. I have overdeveloped leg muscles and my skin is battered and bruised. My back aches and as I look at my massive pack beside me, I feel so thankful I wasn’t carrying it at all but that my Friend…who never let me doubt the purpose of this journey and provided all that I needed to survive…He also carried that enormous pack. I never would have made it all these miles otherwise. I’m burned and scraped up but here, and just trying to rest for a moment and take in the view.

When I look far below me at the base of this mountain, everything looks so small and far away. I can hardly remember the valley I leisurely strolled through before embarking on this journey. I was moving so fast that I couldn’t appreciate the vast richness that surrounded me. It is absolutely breathtaking from this point of view. The grass in the meadow is so lush, it must have felt soft and fresh beneath my feet. I should have walked barefoot and really enjoyed it.

The trees are so tall and provided the most luxurious shade to rest under but I was just too busy and blazed right on through. The river from which cool, clear water flowed looks like just a trickling creek from this height but I heard it as I passed. I should have watched it as it flowed peacefully over rocks and logs bringing life and refreshment…but I had somewhere to be and something to do. Life surrounded me, nourishment was there to replenish me, cool shade abounded to protect me and I was too busy.

Then, I hit the rocks. No more cool grass, no sweet water and no comforting shade here. Just hard, hot, unforgiving rocks to struggle over and under. Occasionally, there would be an overhang that would provide shade and sometimes fresh water would flow from between the rocks but when I looked up, I was awed by the magnitude of what was still left to cross. I would turn to my Friend and beg to turn around, to repel down the side back to the valley floor and He would encourage me, promising me that the other side of the mountain was far more than I could imagine. More trees, lakes and rivers so clear you could see all the way down and grass so lush it would be like sleeping in a cloud. And so I pressed on. There was no point in going down anyway, I could trip and fall and that would be the end of me.

He would carry the pack the whole way….He promised. And He did. When it was more than I could bear, He handed me more manna or cool water…and sometimes nothing else would do but to carry me. He couldn’t carry me the whole way though. If He did, I could not appreciate all it took to get to the top. I could not feel the accomplishment of being pushed beyond my limits and succeeding. I never could have finished this race before. I was busy, overweight, overstressed and rundown. I was weak, emotional, whiny and selfish. He picked the worse climbing partner imaginable. I thought, He made a mistake. But He insisted that I was the one…and without Him…I wouldn’t have made it ten feet…not even over the first boulder.

And now, I sit. I sit and I reflect and it is time to rest. I see them…fellow climbers…fellow hikers. Some are so in shape…they just zoom up this mountain….hair flowing behind them…face towards the sky…no cares in sight…and sometimes their path up here is smooth with steps thrusting them forward. Others…their boulders cause them to hang sometimes by one hand…just four fingers…but He has a harness on them…He is safely attached…He is holding their one arm with both hands very tightly. He is never afraid. I ask Him why some paths up this mountain are so easy and some so crippling…I simply can not understand. Each path can only belong to one person. Each is uniquely different. Each person must take their path and overcome their boulders…some big and some small…some can walk beside Him the whole way…although no one on the mountain walks alone or is strong enough to carry their own pack! Others must be carried many times and must never let go of His hand….some walk hand in hand with Him. Those who try to climb alone are often seen slowing, stopping and falling. They are determined to climb regardless of the fact that their packs are pulling them down and their missing vital safetly equipment. It will take them longer to get to the top…they may never.

Here I am…I am breathing in and blowing out. I am looking at this mountain and taking it all in. Where I have come from. It’s another perspective up here. Not bad…just different. I can see more clearly. Sometimes on the mountain, I felt surrounded by storm clouds. It was pretty hard to see above or below me. I could only see My friend and exactly where I was at that very moment. Sometimes I couldn’t see even the very next step but my Friend told me exactly where to put my right hand and then my left foot and then my right foot and my left hand. He already knew where the perfect spot was. I was often grateful for the clouds. Had I been able to see how high the mountain really was or how steep the next cliff would be, I might have just let myself slide back down. I would have sat and stayed there in utter despair and disbelief. His words never failed to encourage me to just take the next step.

I have to sit and just think. I can’t yet tell the other climbers about my journey. I am out of breath. I can breathe deep enough, but at this altitude it is difficult to talk without running out of air and feeling as though I may suffocate. My Friend knows though. I don’t have to tell Him. He was there the whole time. No words need to be spoken…we are kindred spirits.

New climbers want so much for me come and get them. I just can’t. I don’t think I could climb this again. Not right now. My body and heart and mind just hurt too bad. Someone else will go. Someone who has had time to rest and heal their wounds. Whose heart and chest are no longer burning with the fire of running. Someone whose cuts are scarred over and whose bones have repaired. They are strong enough to get back down and up again. Several helped me. My Friend knew that seeing climbers who had already been all the way to the top and could come back down and climb again would renew my hope. They could help carry me and inspire me. He always chose wisely. Some climbers had a fairly easy trip the first time and could go up and down multiple times and some had a terrible go of it, but had healed well and were ready to help one more. Some just healed and pondered and moved down the other side of the mountain to the next valley. The thought of heading back down and then back up again was more than they could bear. He knew. He was all right with that and was happy to send them on their way. He would be there for the next journey.

Again, here I am. I’m not ready to go over to the other side, nor am I ready and willing to head back down from where I came from. I sit here. I think…I pray…I reflect…I pray and I wait. I don’t know how long I’ll be here. You can join me if you wish. I won’t talk much. I may not be as friendly as I would like. I’m pondering. I’ll be very glad you are here. I’ll smile and nod and can listen sometimes. And I’ll pray…for me and for you.

Who will tell whether one happy moment of love or the joy of breathing or walking on a bright morning and smelling the fresh air, is not worth all the suffering and effort which life implies. ~Erich Fromm

Damaged people are dangerous. They know they can survive. ~Josephine Hart

Prosperity is a great teacher; adversity is a greater. ~William Hazlitt

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