June a full month.

June in our family is filled with celebration, grief, full schedules, summer routines, everyday mundane life and extraordinary moments.   

June celebration starts off with Joe’s birthday, followed by Batten Disease Awareness Day, then Peter’s birthday, then Father’s Day, then Jacob’s birthday, then our anniversary and the anniversary of my mom’s death.  With all sorts of life and ministry things sprinkled in there as well.  Wow, I’m tired just writing and reading that.  Celebration, sorrow, joy, and grief all collide and are packed into one month and sometimes one day.  

 

Having joy and sorrow side by side is a good reminder that each moment is just a moment and that it will pass.   Celebrating together as a family, laughing over the funny things the boys say and do, watching in awe as our boys grow and change, is both beautiful and sad.  Beautiful because life goes on, and sad because life goes on.  

 

Peter could be a party planner someday.  We spend lots of time leading up to his birthday discussing the theme, figuring out what games we should play, planning the schedule, and talking about the cake decorations and party decorations.  He loves his birthday week and the party.  

 

Jacob is the life of the party on a normal day.  So we had some family friends over to enjoy chocolate cake with chocolate icing and homemade chocolate ice cream.  Do you see a theme? Jacob LOVES chocolate.  Our newly minted four-year-old has lots of questions and lots of opinions, and he’s not shy to let you know about either.   He is also not a fan of change; sometimes, just changing his clothes is not something he is interested in.  

 

Recently, in a conversation about Jacob, I realized that he doesn’t know a world without Batten Disease.  Peter’s diagnosis came 6 weeks before Jacob entered our world.  I remember Jacob failing his initial hearing screening and my postpartum hormone brain thought through tears, how I was going to have a blind son and a deaf son.  Peter has never seen Jacob.  Jacob has never known the Peter we knew before we knew about Batten Disease.  Jacob had also never known his parents before Batten Disease.   We try hard to let Jacob be his own person, but we also know that Batten Disease has changed our family and us.  

 

As I have journeyed through grief over the loss of my mom, a nagging thought at the back of my head is that the death of a parent is expected.  In a recent conversation with a friend who had also lost their mom this year, I was reminded that while it is normal and expected, it was not expected this soon.  But the thought of slowly losing my son and being able to do next to nothing about it, that is not natural or normal.  

 

And yet time goes on; Miglustat seems to continue to press pause.  This summer, in between everything else going on, Peter has been working on learning new assistive technology and learning new skills with his iPad.  We are trying to help him become more independent.  I would love to one day feel the ache of missing him because he has gone off to college or started living on his own, instead of the ache of missing him because he is no longer here at all.  

 

We live straddling the here and now, while planning for the unknown future and hoping that the future holds lots of time with both our boys.  This often helps us to focus on celebrating the everyday mundane moments and choosing joy.  During the times that it doesn’t, we lean on Christ to continue to find hope and choose joy even in the dark and unknown times.