A full weekend

Summer seems to be gathering speed as July waned quickly into August, and we were adrift in birthdays and barbecues and baseball games.  Aaron turned 36 on Saturday, in the midst of a weekend on call, full of procedures and disasters to tend to at work.  I love how the children look like sparks flying off his fire in this photo, as they bend like reeds in the glee of giving gifts.

Amy's weekend was full of partial seizures, and a few full-blown ones as well.  I have noticed they are clustering on the weekends, which is a call to slow down again as a family.  Just when things seem to be under control, and we start to pile on the fun as we dance in joy that sickness is abating, the seizures come thundering back to remind us that this is not a temporary change in our lives.  It is for good, at least for now, and our lifestyle must reflect the fact that we have different needs in our family than before.

I remember arranging respite care for families when I was a nurse.  I remember thinking it was long overdue and feeling some amount of confusion at the reaction we usually received from parents when we finally had all the ducks in a row so they could leave their kid for a few hours to go on a much-needed date.  They were usually guardedly thankful, with a pervading sense of trepidation.  I remember one mother crying at the door of the hospital room as her husband propelled her out - "is it really worth it?"  I didn't get it then, but I do now.  As much as we needed a date on Saturday, as much as our hearts longed to celebrate Aaron's birthday in some way, it was hard to leave a little one who would seize while we were gone, and harder still to know that we would probably pay the piper for the stress of yesterday with a crummy, seizure-filled Sunday.  Figure into the equation the fear on the part of our poor sitters (thank you, Auntie Shera, for a great date yesterday), and it is very difficult to make yourself go anywhere.

And so, after a weekend filled with work, fun, freedom, and adjustments, I look back and wonder how to cope better with this new life.  Amelia is definitely not the same.  Almost a year has gone by now, and we are still in the thick of it.  Today at church, surrounded by people with mental disabilities and physical handicaps in the foyer, my whole world felt like it was crashing down around my ears.  How do I accept the fact that my daughter sometimes fits in there, in the foyer when all the healthy people have filled the sanctuary for the message and the healthy children are happy in Sunday school, and only those who can't make themselves fit a mold for that one whole hour are out in the foyer where they can be themselves?  How do I help a little girl who is sometimes just fine...and other times not?  How do I comfort her, how do I teach her so she can function best, most often?  How do I grieve and adjust to what it means to parent a child with a handicap of sorts?

I tried retreating this evening to an epilepsy support group online.  That failed dismally.  The children in that group sometimes have a seizure once a semester in their classroom.  The big kind.  They don't have partials or absence seizures that go on for hours and confuse everyone around them.  The place I do find comfort...other than in the pages of my Bible...are the encephalitis support groups online.  Encephalitis is an awful disease, and it wreaks havoc in the lives of those who suffer it.  There I can fit in, Amy can fit in, our story fits in.  There I find a little slice of support that soothes the wounds of the day, and I can leave with a smaller lump in my throat.  So I will retreat now to my bed, where the thoughts can swirl and sort themselves into some sort of pattern to fall to rest for the night.



I was comforted today, reading Philippians 4 from the Amplified Version that is written on a piece of paper and taped to the windowframe above my kitchen sink:
Do not fret or have any anxiety about anything, but in every circumstance and in everything, by prayer and petition (definite requests), with thanksgiving, continue to make your wants known to God.  And God's peace shall be yours, that tranquil state of a soul assured of its salvation through Christ, and so fearing nothing from God and being content with its earthly lot of whatever sort that is, that peace which transcends all understanding shall garrison and mount guard over your hearts and minds in Christ Jesus.