monday musings….on tuesday

My week is off after having a paid holiday yesterday so it feels like Monday. But I’m all about a three day weekend so it’s all good! Here are some random musings for your Monday. I mean Tuesday.

* My sweet Trevor is doing great. I sure enjoy him these days. Every age has its challenges but I have to say, he is a delight. He has the sweetest friends, helps around the house without grumbling and engages in the most interesting conversations. Next month he officially becomes a teenager and is in another growth spurt. One more to pass me up in my quest to become the shortest member of the family.

* All together now – holy tailbone pain! Sidney and I left my friend’s house at the lovely time of 6:30 am yesterday to get downtown for her 7 am volleyball warm up. What we couldn’t see was the layer of thick ice under the freshly fallen snow. As Sid attempted to walk down the cement stairs outside the front door, and failed miserably, she landed on her tailbone and smacked her low back on the edge of a step. In my quick attempt to come to her rescue, I followed blindly and also fell on my bum. So we are both hurting today and very stiff. We were both belly laughing as I got in the car after scraping the ice and falling a second time. What else can do you if you can’t laugh?! I’m sure we were a sight to see completely covered in snow. Then my sweet friend fell on the driveway too about 15 minutes after we left. Too bad she didn’t get the text message I sent her warning her about the ice rink they call a driveway. Needless to say, I’m impatiently waiting for spring so we can open the windows and plant flowers. My pots on the deck are very lonely.

* Brad likes his job at HyVee and is really enjoying the paychecks. I remember those days when a $135 check made you rich! Now we can’t even buy a week’s worth of groceries for that amount. He is anxiously waiting for spring with me because that means it’s time for golf and if there is anything Brad loves, golf ranks up there as a favorite.

* Boring. That’s just how I like it too. Travis and I are boring. There just isn’t anything new with us and I’m perfectly content to keep it that way as long as I can. These seasons of nothing are cherished times because it means we are doing well. The older I get the more I appreciate that cute guy at my side.

* Make A Wish! It’s officially happening. We are headed to the Florida Keys in June thanks to the generosity of everyone who donates to this amazing cause. Excited, humbled, blessed. It’s hard to put into words what an amazing opportunity this is for our family, definitely one we would not be able to do on our own. We know the resort we will be staying at but don’t have specific dates yet. Having never been that far south in Florida, it will be a fun adventure for all of us. The conflicting emotions of such a once-in-a-lifetime-trip have been difficult at the same time. Because going on a Make A Wish trip means I have a child with a terminal illness. A nameless, cureless, slow progressing, life sucking disease. And I didn’t expect the swell of emotions that came after the wish granters left our home last week. While we are all looking forward to this time away as a family, it’s hard to ignore the blaring, flashing sign that says “you have a sick kiddo”. On a day to day basis, I don’t look at Ryan and say “oh yeah, I forgot you could die from your seizures at any moment”. The realization is always tucked away in the corners of my heart, but I don’t dwell on it. That kind of thinking just doesn’t fit into my day to day life. So yeah, I’m excited, but it’s so bittersweet at the same time. Sometimes the tears just flow so easily.

* Other summer plans include Trevor going back to the FCA (Fellowship of Christian Athletes) leadership camp he attended last year and had an absolute blast at. Sidney plans to detassel again and get some volleyball in, and Brad will do his usual thing – work, golf and get ready for football. A weeklong trip for the three of them to fly to Idaho is in the works too if we can get flights cheap enough. Travis’s brother and family live in complete beauty and want them to come. I wish we could all go as we originally planned but with this Florida trip, I simply don’t have enough vacation days for both trips. The joy of a new job is having to build your vacation and sick banks.

* Sidney had a three day volleyball tournament in Omaha this weekend and did great. She is so passionate about the sport and really gives it her all. Right now all she can think about is going to high school in five months – it will be here before we know it – and is so done with junior high. I remember getting antsy for the end of the school year to come once second semester started.

* We are in wait mode with the newest seizure medication, Fycompa. Our insurance company doesn’t want to pay for it and who can blame them? It is brand new and retails for $4450 a month. Of course no insurance would agree to pay that much but it’s obviously not cheap. I’m just hoping they will cover it so we can at least see if it helps at all since it has a different mechanism of action than all the other seizure meds on the market. I have a hard time believing anything will work long term since Ryan has failed on 19 other meds, but it’s all we have. His seizures are the same and nothing really changes with him day to day. Really that is a good thing because anything that changes means something is wrong and we don’t want another hospitalization for prolonged seizures or a bowel obstruction. His baseline, while precarious, is better than the alternative.

* I’ll leave you with this – today is Tuesday, February 18th, and it’s 66 degrees outside! Two of my work friends and I walked around downtown Lincoln on our lunch break and it simply couldn’t have been more beautiful. I’m glad it’s not Monday after all!

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One thought on “monday musings….on tuesday

  1. Sorry you fell on the ice under the snow. A lady where my youngest son works fell Monday and broke her tail bone.
    So happy you are all going to FL from the Make a Wish. Have fun when you all go. Your family is really growing up.
    I need to go to the store and have not gotten out as had to many phone calls and texts today. Just one of those days which I loved talking to everyone I got to talk to .
    Praying for Ryan daily and God Bless you all.
    Delores

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