To Gather My Thoughts


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There has been so much going on this Christmas Season that I am finding myself in a whirlwind of activity and emotion. Let me see if I can break this down a bit and give you a window into our world.

Thanksgiving was wonderful…we had two. One with just family and one with a few of the UPenn basketball players. It was a sweet week filled with lots of conversation and food. John was the master of activities of course and the center of attention. The fellowship was unparalleled. We had Darnell, Greg, Jamal, and Mike over from UPenn. We played pool, ate, talked about every topic known to man and enjoyed each other’s company. In January when UPenn plays Villanova, John will be inducted into the UPenn basketball team as an honorary team member. So, be on the look out for that.

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With Christmas upon us, the usual activity has ensued. Shopping, parties, Christmas light looking, cookie delivering, and the usual holiday cheer. This year we have something more going on. Fireman Jim nominated John John for a dream bedroom makeover. We are preparing for the Corner Kingdom Project to give John’s room a dream room makeover. They have amazing plans (no spoilers) to create a fire truck kingdom for John to retreat to when the world is more than he can bear, and to just enjoy on a daily basis. They are going to tear apart our playroom and create a bedroom for John John and Hope to enjoy, with elements to accommodate his special needs and make his life easier to live. The fireman will be doing most of the work, and the UPenn basketball team will be helping with demo.

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We have been struggling a bit as well. John is struggling with some issues that have raised red flags on our radar. He is experiencing headaches, vomiting, night terrors lasting for more than an hour where we can’t wake him up (this is terrifying), and extreme fear. He won’t go to the bathroom alone, he won’t sleep in his own bed for the whole night, and He is just in general very fearful of being alone.  We are not sure why all of these things are showing up at once, but it begs the question. Is the cancer spreading? We don’t know. We worry, we debate, we quietly think about these things when they happen while keeping our grown up faces on.

Personally, my heart is breaking. I see my child transforming into a fearful, clingy, tearful little boy. It is mixed with perfectly normal afternoons here and there. He is eating less lately. My mom radar sends up red flags there too. I can’t bring myself to move the next mri up any sooner than the first week of January. I just want Christmas. Call me selfish, what does it matter if there is a new tumor or not. I want an unblemished holiday with my whole family. An untouched memory of Joy. I want surprises and surprised faces as they open gifts and we go to church to celebrate Christ’s Birth. Then we can deal with whatever this is.

As I shop, make cookies with the kiddos, and create memories…there is a weary part of me that says with cynicism, this could be it Faith. This could be the last one. And yet, it is a beautiful commotion of love and giving. Just as it should be.

John can not tolerate a lot of the homeopathic treatments we have been using in the last couple of weeks. Its nothing harsh, just supplements and tinctures. But, the vomiting is stopping him from taking them. It is a huge source or sorrow and frustration for my husband. He is intent that these remedies are the answer. And, I don’t disagree…I just wish I had a window into my sons brain to know what is going on.

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So, it boils down to a lesson in Joy. Joy often comes mixed with sorrow. Expectation mixed with trepidation. Fear mixed with hope. It is a conflicted world we live in and there is Joy to be had. We grab for that. We hang on to it. There is hope to be had. We grab and hold on to that. We are intent on enjoying this Christmas and dealing with the MRI the 8th of Jan. We should know the results the same day. I sure hope I find time to connect with you in between.

Filled with HOPE,

Faith

 

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