Whats going on? #9


IMAG1446 IMAG1476 IMAG1494 IMAG1374 IMAG1321 IMAG1403 IMAG1323 IMAG1348Well, a lot is going on around here. We have spent a lot of time going to the lake, the children love it there. If there is one place in our house that signifies summer is here, it is the lake. Sand, friends from church, mommies everywhere, and good stinkin food…. *sigh* We have gone to the movies, bought toys, and painted at the kitchen table, enjoying the gifts friends send to us, and had pot lucks. We try to make life fun day-to-day. That moves very slow.  Fun is not in scheduling or in what we can go do…it is in whether we can slow down long enough to allow whatever were doing to be fun. No one wants to be rushed along….especially not John who moves slowly…   🙂 We are spending 2-3 days a week going to Chop in Voorhees or Philadelphia depending on who wants to see John. That is 4-6 appointments a week. That is approximately 150 extra miles of driving a week. That is approximately 5-8 hours in the car a week. You get the idea.  We do stuff that’s fun where it is tolerated in between doctors appointments.  That fills most of our weeks….

How is John? It’s hard to say really. We are told to watch for signs of brain inflammation or increased brain pressure. These are specific symptoms in a textbook. But, he has not followed the textbook at any point during this journey. It has been said by several of his doctors, that he is the poster child of “the patient doesn’t always look like his mri”  We are to look for nausea, vomiting, excessive headaches, balance disturbances, decreased appetite, muscle weakness, and lethargy. So, what do we see? He has headaches every day since he came home from the hospital. This week his balance has worsened. This means falls. He was standing in the kitchen the other day, just standing mind you, and he fell over. Talk about adding insult to injury for this poor kid. He is not trying to run or climb, which is strictly prohibited. He was just standing there. Bam,he stumbles around, knee meets the floor. Bandaids abound. Kisses. No tears in front of the child. This happened 4 times this week. It didn’t happen at all since before his brain surgery to remove the tumor. His ataxia is worse. WTHeck? Ataxia? This is the way he moves his weaker side of his body, the right side. Ataxia looks like jerky weird movements in the limbs or parts he’s not trying to actively use. It’s that right arm going crazy when he walks, jerking around and flying in a manner that makes no sense. Yeah, the arm had calmed down, to an amazing degree, after he regained the use after surgery. Its back this week. IDK…..well, I will tell you that I’m worried. What am I looking at? Is it his cancer spreading, or his tumor growing back? Is it brain damage from surgery like i would love to think? The line between reality and symptoms of problems is very blurry. I know I am a mother, with emotions in hyperdrive. Yep, mother guilt. But, I know he wasn’t doing some of these things last week. So, we will go see the oncologist. On his 4th birthday. As horrible as the timing is, the world will not end. I suppose there is no good timing for cancer.

We are all trying our best to construct this ideal world to function in….well, were not in control. We say it often with little halo’s above our heads in the picture of our minds, when things are going alright. But, this thought is what takes the burden off our shoulders and makes our yolk light. WE ARE NOT IN CONTROL. Our job is to do the best we can with what we have been blessed with and leave the greater picture to God. He knows what He is going to accomplish through our stories. We are not victims, we serve a greater purpose that we cannot see. That is enough for me. Ill have faith as I walk through this season of my family’s lives, that it is not in vain. Our suffering will be used for good, one way or another.

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2 thoughts on “Whats going on? #9

  1. My thoughts and love are with you everyday, my dear sweet friend.
    Love to all, Sally, Joe, Paris and Princess..xoxoxo

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