Sunday, January 20, 2013

decline...or sideways slide...

How incredibly fast a week can change things.  Last week on Saturday, John was doing ok but for the vision issues.  Then, Sunday, he woke with difficulties using his left side.  We were rushing out the door to church so I could be there for choir practice and I asked him to change Neil while I got everything else ready.  It took him so much longer than usual, it concerned me.  He started limping.  Each day, I watch him struggle with getting up, with doing anything, everything.

He is determined he will "get it back".  His doc at the Cancer Care center in Frederick promised him he would.  I told him, John, I thought that was a bold statement.  NIH says that he may or may not.  Which is just a  bunch of air.

I keep remembering how the docs at NIH told us that when patients with GBMs die, they just get more and more sleepy, until they eventually just don't wake up.  I am not sure what that will look like.  I can't even wrap my brain around how to think about that.  So I try not to.

Our new dog is adjusting to everyone but the cats quite well...super snuggly and as long as he is on his leash, he doesn't go after them.  I broke my toe falling down the stairs the other day.  I figure it was my way of having empathy for John, since it is my left foot.

I also had a friend the Walkersville area offer to organize and clean and organize event for my family!  Yesterday, some friends came in to help clean the bedroom and kids room so that it is a safer environment for John getting around.  Last week, he fell three times in our bedroom.  Everyone did an amazing job.  I was so very touched and grateful.

We are still looking for a home.  We were so excited about what we thought we would be able to get using both the USDA and the Interfaith Housing Authority.  We thought we could find somewhere we would actually be able to fit, something nice that really would be our forever home.  And then they came back with a $271,000 limit for the best of the best credit.  That won't be us.  So we are back to looking into 3 bedrooms, or townhomes, or houses in areas that are a little sketchy to raise kids.  We are going to look into just doing a regular USDA loan and see how many more doors that opens.

I find myself thinking of the last little girl I worked with at the Greenhouse Nursery School in Maine, Samantha.  She was so damn sweet- this unusual little dark haired girl with autism who LOVED hugs and talked a mile a minute with only about 1/4 of her words in English.  I would have followed her through elementary school as her aide if they could have paid me enough to afford my school loan bills.  So when I visited a year later, I stayed at night at her house.  Samantha had learned so much language, it was breathtaking.  Just as loving and excited, talking just as fast, now all the words were English and it was so cool to understand her!!  I went with her when she got her infusion.  The year that I had been gone, she was diagnosed with leukemia.  Talk about not fair.  I never was able to hear about how she and her family were doing after that visit.  I have a picture of me holding Samantha over my head in the hallway by our room.  It is one of 4 pictures of me with kids I have worked with over the years.  Kids I will likely never see again who had large loads to carry for different reasons.  For years after I worked with them, the thought of them and not being there to help and support them would make me cry.  Kids I will always love in a special way, kids I have to believe have made it through, one way or another.  I carry them with me and try to allow them to make me a better teacher, a better person.

I have to believe that John can do this.  I have to believe that.  And I have to plan for what to do when he doesn't.  I need to find a way to line up daycare for Neil.  Of course, when I was on leave last year, the Social Services lady told me that we had a great need, but they didn't service need.  They serviced numbers and we made too much with John's disability alone.  It won't pay rent, let alone anything else, but that is irrelevant.  So not sure just what sort of help we can get on that front.  But I find I have to believe it will happen, somehow.  Something like what they say in Shakespeare in Love.  It'll all work out in the end.  How?  I don't know...it just does.  I continue to look for a house even though it scares the heck out of my dad, worrying that I can't afford it, that I won't be able to care for the house...I just have to believe it will work out, that we can do this.

Because if I don't believe that, I don't know what to do.  At all...I just have to smile and laugh with the kids, watch shows and snuggle with John when possible and try to take the fear and sorrow and gently tuck it into a special, closed up place in me.  Latch it closed, not lock it.  I can't pretend it doesn't exist because if I do, it will gain too much power.  If it weren't for the kids, I would be willing to chance that.  But I love them and need to figure out how to get through this all as whole as possible.

So now, I will go cook dinner, throw the kids into the bath, maybe put a show on for the kids, and, if john has any energy, get him to watch a show with me...

Just keep swimming...