Remembering and hurting

I need a little space to grieve and this is where I am turning.  My head has been spinning for weeks needing a place to settle into.  I am hoping writing here will help. It is a Friday morning, March 3 at 11:50am.  I had high hopes for the day.  I had plans.  Instead, I am sitting here watching Keyan sleep.  I wonder when she will wake up? I watch her  having some sort of neurologic misfirings that keep her body in an almost constant twitching motion while she sleeps, her muscles tightening over and over again.  I feel sad. I feel an ache in my body that makes it hard to breath.  But not because of today, although whenever she sleeps this much it is a reminder of where we are in this journey, but more so, I cry for what we have lost.

Comparing Keyan's days today to where she has been is terribly painful for me.

*She attends school sporadically for 2-3 hours at a time.  She used to be able to go all day.  This means she misses out on choir concerts, cooking with her class at times, many of her therapies that she could receive at school, and so many peer interactions.

*This year, she made it to one afternoon of Special Olympic bowling.  Last year she was able to compete in the end of the season tournament.

*The last time the Young Americans touring group came to town she was able to participate in the weekend long workshop.  It was intense.  She took breaks, and it was a lot for her, but she was there and loved being a part of it.  The group will be here in two weeks and I have to wonder if going to watch both shows will be too much for her.

*She used to be able to attend her siblings swim meets or basketball games.  She never really loved going but at least she felt part of the family and both Paul and I got to go.  The last time we tried to take her to a basketball game she ended up crying because of the noise and the surroundings were too overwhelming, despite headphones and her iPad.

*Keyan now spends most of her time at home in her reclining chair or bed watching movies.  Her body and mind are fatigued and the pain and gagging are less if we all honor that.  She used to play and join at the dinner table.  Every damn night around 5:30 Paul and I silently look at each other and wonder if we make her come to the table or let her be.  I'll admit that sometimes I make her sit with us out of selfishness.  I want her to be part of "us" so badly.  But often, the conversations move too quickly and she gets confused or frustrated at her brother being his noisy 15 year old self.  She sits on the edge of the bench just waiting for everyone to be done with sharing their best and worst part of the day so that she can go back to her room.

*We have her registered for summer camp again this year...but I have no idea how that will play out.  Two summers ago she was able to spend most of the days at camp during that week.  Last summer I think I picked her up early every day and I know this summer she will spend less time there....a place that she loves, a camp that loves her with a depth we rarely see, a group of kids who embrace her differences, and yet she will most likely not be able to physically partake in much of that week.

*The paper work came home this week for Special Olympic track and field.  Do you remember two years ago when she went to Calvin Collage and ran on the track, did the standing long jump, and the softball throw?  I do.  I remember that day vividly.  Last year she was all "trained" to go but her feet go twisted up with one another at one of the final practices and she fell.  Her body was too bruised and scraped up to go.  We had been seeing more falling and tripping but it happened to catch her right before the big day and she couldn't go.  This year, I looked at the paper, Sidney gave me a hug and said, "It's sad that she can't do it anymore isn't it mom?" and I threw the paper away.  No use even playing the game of "maybe we can figure something out."

*Keyan's IV and medicine schedule is such that it is virtually impossible to have anyone help take care of her and give us a break.  There are a few hours in the evenings where we have precious friends that come and help bathe her and get her ready for bed.  There are a few special people who come early in the morning and sit in my dark kitchen to stay with Keyan while she sleeps so that I can take my girls to school a few days a week.  There are brave friends who are willing to put aside their own fear and learn how to give her medications and use her wheelchair.  A year or so ago that was so much less complicated, now it is multi-stepped and overwhelming.  The timing of everything has gotten more strict and Keyan's need for additional PRN (occasional) meds has increased....and none of those are easy to give.

*Leaving the house with her has even changed.  Do I have all of the meds I need and even the ones that I might need?  There are so many.  Do I have the heating pack, a towel for gagging, her essential oil stick for nausea, the iPad, the headphones, the suction machine, the flushes and syringes for the meds, the disconnect kits, the wheelchair, an extra set of clothes, the list goes on and on...

This list is just a fraction of what has changed for her...a lot has changed for the rest of us too.  And yet, what I find very interesting is that I can snap a few pictures of Keyan watching April the giraffe and her yelling at the giraffe for not having her baby yet.  Or post pictures of her doing a puzzle, or  out with us to get ice cream, share her funny conversations,  or catch her sitting in her chair smiling at the camera.  I can can even capture and share swim meet celebrations, Super Bowl parties, ear piercings, meals that we eat, or any number of other things, and our life from the outside could be seen as pretty normal.  But I have no way to share the pain in all of those things.  The dividing and conquering that Paul and I have been thrown into.  The enormous amount of things that we can't do any longer. The hours upon hours that I sit in the confines of this house because we are trying to honor her body and give her the best days she can have.  Boy do those days look so different than days already lived.

Trust me friends, we are all grasping on to the many many things we have to be thankful for and once again, I will say, we know there are harder days coming.  But today, and honestly maybe even the last few months, this is where I am. This is the brutal reality...we are doing everything in our power to keep this beautiful girl alive and "thriving" in her own way, and it seems to be working.  But I fear it may be slowly killing the rest of us.  My heart cracks a little more every time we have to face another "remember when."