The past two weeks have absolutely flown by. I find myself often wondering this time of year why we have to celebrate Thanksgiving and Christmas so close together. I love fall decorations and preparing for Thanksgiving then in the blink of an eye it’s gone. Then it seems we just get the last decoration hung on the tree, the wreath on the front door, the poinsettia on the table and the cookies baked and ready to share with friends and neighbors and then it’s all over and time to disassemble everything. I wish we could put the tree up, leave the decorations and have a good two or three months to really ponder and celebrate Jesus’s birth and all it represents for us – salvation, grace, the hope of eternity. And in light of the tragic events from yesterday, that hope of eternity is something I treasure. Simply opening the msnbc.com app on my phone this morning brought link after link to stories of murder, suicide, child abuse and injustice. What a fallen world we live in, yet I am so very thankful all this terror and grief is not the world we belong in but simply our temporary home. God bless the families and loved ones affected by yesterday’s tragic events.
The kids are having fun Christmas shopping and getting ready for the holidays. I have now made 16 dozen peanut butter balls, the first 5 dozen quickly eaten by the kids, their friends and some that were given away. The last 11 dozen are in a huge container in the basement fridge with duct tape around it to keep everyone’s little fingers out. I still have a long list of other baked goods to prepare but I don’t like to do it too far in advance or they don’t seem fresh. Last year I was terribly depressed and didn’t do much baking at all, but this year I am feeling great and ready to put my Christmas baking spirit on! And December also means birthdays around here. Brad turned 15 last week and has been doing a lot of driving already. He’s doing a great job and loves to get ahold of those keys every change he gets. And in only 14 short days, the big man in the house will be 40 yrs old! That’s right, Travis is starting a new decade and then I will soon follow in January. I distinctly remember standing in my mom’s bedroom watching her fix her hair and talking about how old she was – 36 at the time – and thinking she was OLD! And now we have surpassed her. I get it now when people say they don’t feel their age and that age is a state of mind. I really get it!
Well, we finally came to the conclusion that we are done trying new medications with Ryan. It’s a very emotional decision to make because we don’t want anyone to think we are giving up on him, which we are not. And besides, it shouldn’t matter what anyone else thinks because he is our son and no one else could possibly love him as much as we do. But the Sabril isn’t working. In fact, we can’t even get him to a sixth of what the therapeutic dose starts at because his body just can’t handle it. He was like a zombie sleeping all the time, spacing out and falling over to the right when he would sit down. We tried twice to increase the medication and it simply didn’t work. Even the Sabril scientists didn’t know what to say because they’ve never had a child on the medication who is missing one forth of his brain so they can’t say how Ryan’s body should react to it. We then discussed Potiga which is a new drug for seizures but this drug also has a lot of possible side effects like urinary retention and hypertensive crisis. We’ve known for years he is a medical failure with medications and just can’t justify putting him on any more drugs that have only a minute chance of even helping and then for how long? So the decision is made and unless science can come up with some other procedure or device that can give any hope of decreasing seizures, we are done. No more surgeries, no more new meds. We will leave Ryan on the six seizure medications he has been on for years and continue to use the emergency drugs he needs and take what comes. As you all know, he is spoiled rotten, loved beyond words and very well cared for. He’s happy and giggly and changing the world exactly as God wants him to. And for that we are so very grateful. He is a joy that is indescribable and provides so much love and grace for our family. God has been so good to provide everything we have needed on each step of the journey with Ryan and we know He will continue to guide us in the days and weeks and years ahead. It’s been an emotional week thinking back to everything we have done to try to stop this terrible monster that strikes our son repeatedly every day, but in the end we have to very simply place him back in the arms of God and receive the blessing that comes with the pain, enjoy the love that comes with the heartache, take in every smile that comes with the seizures and remember that God promises to never leave us or forsake us. I don’t need more than that.