Getting a bit stir-crazy {Mayo Day 2}

Amy started getting a bit stir-crazy today on day 2 of being confined to bed. By this I mean she started doing things like hopping up and down all around her room, doing jumping jacks, and trying to jump on her hospital bed. Trust me, hospital beds do not "jump" well! She also triggered the seizure episode alert system at least a dozen times. Which is a bit irritating for everyone - especially the staff - as it brings about 5 nurses running full tilt down the hallway to save her life in the event of a bad seizure!

It wasn't until after midnight last night that I finally got her to sleep, after much cuddling, reading of books, singing of songs, drinking of milk, and attempting to bounce on the bed. Tonight, we read the incomparable "Olivia" by Ian Falconer...and giggled that "Olivia" could be called "Amelia" instead, as this little pig character is never tired, exhausts her mother, is pretty good at almost everything, loves to paint, dance, and sing loudly! I was thankful to have the help of an excellent speech pathologist and occupational therapist today, who brought many fun activities to help keep Amy busy in bed.


The evening hours tonight were long and difficult. Amy either asking or just climbing out of her bed, wires and $2,500 back-up of monitoring equipment and all! I felt abandoned and alone down here in Rochester with no visitors and a little sad that they haven't caught any "conclusive" seizure activity yet, which led to the depressing announcement at 3 p.m. today that we will be staying at least until Monday, possibly longer. Then I spiraled down further with guilt while reading a blog post by a new acquaintance who lost a child she joyfully parented with much more severe special needs than Amy's.

And then I got an e-mail from my mother that snapped me out of my funk and showed my selfish attitude for exactly what it was. That's the thing about guilt...it's usually a selfish emotion, too, because it keeps your attention focused on exactly the wrong thing...you! 

What a joy it is to have some undiluted time to savor, teach, and get deeply acquainted with a middle child tightly sandwiched between siblings. I am sure neither Amy nor I will ever forget these days, and the itchy head (for her) and the long hours trapped in a small hospital room (for me) will fade as time passes. What we will remember is sitting on a sheet on the floor, playing with her new alphabet matching game and learning her letters and letter sounds; reading a hundred books a day cuddled in bed; laughing hysterically while we sing Lady Antebellum at the top of our lungs, accompanied only by our maracas and the audible giggles from the nurses huddled outside the door. We will remember the food service lady she thrilled with an impromptu thank-you kiss and an invitation to come back and play dolls if she had time later; the hours spent finding new places to put her dolls to sleep and practicing dressing techniques on them.

God is hard at work, using that old spade of sorrow to dig a well for joy in my life...and hers. We have shared laughter and a new closeness already. These days are a gift to us both.


And yet...I pray that someday I will no longer go on "vacation" nor "re-connect with my children" in the hospital, for heaven's sake!!

Enjoy the video of us rocking out to Lady Antebellum earlier, before they told us to turn it down and we went acapella!



All the days of the oppressed are wretched, but the cheerful heart has a continual feast.
Proverbs 15:15