What Gives?

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It seems like forever since I’ve posted…partially because we are crazy busy with kid stuff, like all of you, and maybe mostly because I’m a tad bit “testy” lately. I know I am and I just can’t help it. I’m frustrated with myself because I know it’s a total waste of time and energy. I’m frustrated with myself because I KNOW I have so much to be grateful for. So what gives?

CT Scan? Is it that stupid spot on John’s scan that looms over my every thought? The day after John’s doctor appointment I went over his blood and urine results all the way back from April 2012 (I’m not even sure if my husband knows I was up late into that night reading, recording, comparing.). Let me tell you….there are a boat-load of tests to go over. I was looking for the urine tests for his HVA and VMA levels. These level rise in all of us after certain foods are eaten, neuroblastoma cells secrete a higher level and these tests are used as an indicator. When I looked all the way back to John’s diagnosis in 2012 his blood counts weren’t remarkable, but his HVA and VMA were elevated. Of course the day after I was scouring these numbers and waiting for the most recent ones to be posted, I received a call from the clinic to let me know the results were well within the normal range. This awesome news did put my fears a little at ease. So what gives?

Time? Is it that I have the time to worry, worry, worry?. When we were all consumed and in the active fight against John’s cancer and getting him through treatment, I was focused on that day, that fight, checking one more thing off his Kicking Cancer’s Butt list. Now I am in this holding pattern of crossing my fingers, praying like crazy, wanting to appreciate each and every day….but there it is…that dark, pesky cloud of worry.

Questions? Is it the questions from John, that I have tried so hard to avoid, that have come up several times this week at bed time? It started on Monday night when John had asked me when our neighbor Marty had died. I’m not really sure where this comment came from. That kid’s “wheels” are always spinning. Maybe it’s because he’s been working on learning the Lord’s prayer for Sunday school and all that dissecting, (Our Father who art in heaven… “You mean Art like Art class?”). I don’t know, but there they were…the tough questions. In a huge nutshell he asked me if children can die. When I told him that people of all ages die he wanted to know how. I told him one way is by an accident. Of course he wanted an example and I gave the poor one of if we were playing out in the yard and a stampede of elephants came running down the street. He was less than amused and I quickly realized he wanted serious answers. This conversation led to him asking who he would be with in heaven, who would take care of him, would he sleep in heaven. As he laid in bed, those big brown eyes melting my heart… I answered the best I could.

Pissed? Yes pissed…Is it that I am angry? I am angry that my little boy has to think about dying? I am angry that there is this constant worry. I am angry at myself for being angry when I should be thankful for every day…each and every moment. I am angry at myself when our family has a happy and healthy John and we know of far too many families that have lost their children. I know somewhere there is probably this list of “Stages of….” and this is probably like step 6 of 12.

I better just pull myself up by my bootstraps because this is our life, our new, new normal. A life of living for every three months until the next round of scans can give you hope for another 3 months.I know I’ve said in the past that I hope I have my whole life to worry about John, because I desperately want him to beat all the statistics and as long as he is winning…I will forever worry.

I’ve read all those quotes about worry “Worry is a total waste of time. It doesn’t change anything. All it does is steal your joy and keep very busy doing nothing.”…and a bunch of others….I just wish I could live by them.

*I sat here for quite a while tonight wondering if I should post this entry. Again with the worry…. Would I offend parents that have loss their children? Would I offend parents in their fight for their children? Would I worry my friends, my family? I decided to post this because I haven’t held anything back yet ….you get it all…the good…the bad…and the ugly.

Tomorrow is a new day and I’m going to do my best to appreciate it, make the most of it and work on living a life full of gratitude and a lot less  fear. Wish me luck!

gratitude 1     gratitude

Love, Hope and Blessings,

Shelly

The picture of John is of his disguise for his turkey. 🙂

2 thoughts on “What Gives?

  1. Hi Shelly .. you always say it “the way it is” and I think that is helpful for you and for others where occasional thoughts present themselves in “worrisome” ways. We all worry .. and yes .. it’s not very helpful. But .. also you appreciate and that shows and comes through often as well. The whole Gegen family has endured a tough battle and you are winning .. so when those “worry” thoughts creep in, it’s normal .. and you share (most don’t) .. that’s my view :-). Mikko looks so good ! Have a great day .. and keep smiling :-).

  2. Dear, dear Shelly ~ It is so “normal” to worry and to be living on the edge waiting for the next shoe to drop….I don’t know if you can embrace this and practice it, I fail at it over and over but, I do really believe in an Enemy–an enemy of our soul…the bible talks about it a lot. That enemy wants nothing better than to rob you of today’s joy and to keep your worry front and center. Worry makes one sick, depressed, out of sorts, like you said, and just plain robs you of today’s beauty and joy. Claim the power of Jesus to block out those nagging tho’ts and to boot the ENEMY’s butt out of your mind. Sometimes I have to do that several times a day but it helps. God wants you to experience his power and wants you to trust Him…sometimes that gives us fear because what if…. God loves you, He loves Mikko, He loves your whole family . May He make all grace abound to you.

    Love you!! Kathy

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