The weekly report



We spent the day today alone as a family.  My glasses came in yesterday, so I am able to drive, and I was just about giddy with the freedom of that when we drove out of the driveway this morning!  Amelia has had some difficulty with seizures in the last few days, so we headed to the pool.


Music and water...the only two things that pull her out of the deep, long partial seizures.  A day in June was happily spent with my good friend Natasha, who gave us an impromptu private session of her wonderful music and motion class.  Her kids tagged along, and Amy had fun initiating a game of "chase" with Max during the banner-waving segment.  Today, we headed to the pool instead.


God went before us, as usual, and we arrived to discover that it was a party day at the pool, complete with Rock 'n' Roll to Go sound system and dance music piped over the water!  What could be more perfect than music AND water for sweet Amy.  She has been "stuck" in a partial for about a day now, and had a very large full-blown seizure on Wednesday night that was anxiety-producing for me.  We were sleeping together during the overnight we spent at Ben and Megan's home in Lacrosse between appointments at Mayo.  Amy woke me up with her twitching, and the seizure lasted at least 7 minutes from the time I woke up (probably a bit more).  I didn't even think to give her the Diastat because I was so busy keeping her airway open and trying to avoid carpet with the two times she vomited during the seizure (I failed at the carpet avoidance but did manage to keep her breathing, thank the Lord!).


It has been trying.  As I went through photos from the past two weeks, and the serenity of this photo that Aaron snapped through our Holga lens was a reprieve from the mental anguish of the past several days.  I stared at it as I prayed this morning, thanking God that the moments of chaos are interspersed so faithfully with moments of peace, humor, and happiness.  As a Facebook friend of mine said yesterday, "God is good. That is all."


A doctor today saw Amy, heard our family story from the past year, and winced.  She commented on how unlucky Amy seems to be.  I jumped in quickly, and told her that my perspective is so different...to me, Amy is one of the "luckiest" (most blessed) girls I know.  She was saved from something that could have easily killed her...and saved almost wholly intact.  What a blessing!  It is so easy, on the difficult days when pain piles on with seizures, to view our life as a glass half empty.  In reality, our cup runneth over.  What I deserve is death...what we all deserve is death (Romans 6:21-23).  For in Him we live and move and exist (Acts 17:28).  Not only has He delivered Amelia from the punishment for her little sins, He spared her very existence on this earth.  For that I praise Him, especially in moments like these - when I see clearly, as she seizes, how different the outcome might have been.


On a side note, I wanted to pass on the great news that the glasses I got completely relieve the double vision! My headaches continue to persist, and they are awful, squint-your-eyes-shut, find a dark room to hole up in type of headaches.  I am going to try out a migraine medication to see if that helps more than the painkillers that simply dull the pain a bit and make it tolerable.  I see a neurologist about them - and the seizure I experienced in the ER right after my encounter with the toilet - next week.  I also see a speech therapist to address ongoing problems with language.  Typing this blog, for instance, has become quite tedious, as I must return to everything and proofread myself.  My brain continues to substitute similar or rhyming words for the word I intend to type, rendering mechanical spell-check tools useless.  I am praying that issue subsides quickly, as I hope to be writing my dissertation proposal in a week or so.  I would appreciate more prayers on that front, for continued healing of this brain of mine.