August

Originally posted August 10, 2022 -

A group meeting is in the works between our family, Palliative care, Neurology, and Pulmonology as we try to get a better idea of where Jacob stands now and an understanding of why he seems to be in a period of decline.  Now that his breathing functions are starting to be affected, the doctors want to understand our wishes regarding treating breathing issues.  Kyle and I have always been in agreement that we do not want certain interventions for Jacob, so these decisions are relatively easy for us.  

He is supposed to have the hardware removed from his hips this fall, and the consensus from the team right now seems to be that he should not have that surgery.  If we don't expect him to live several more years, then the hardware shouldn't become a painful issue for him and it isn't worth the risk of taking it out.  He's not anywhere near as strong as he was a year ago and there are concerns about how he would manage any type of surgery at this point.  Palliative care wants Neurology to take their best guess at a life expectancy prediction so that should be fun.  These meetings are completely surreal.  

And yet life has to go on.  Kids have to be shuffled to activities, back to school supplies have to be purchased, birthday parties planned.  Everything feels so heavy.  Days and nights blend together.  I reassure Addison with a breezy tone -- she's worried about him needing oxygen, she worried that she did something to make him worse, she's worried about why he doesn't respond when she tries to play.  She asks about Heaven, about what we will do with Jacob's room when he's gone.  Eli doesn't want to talk about Jacob at all right now, and that's okay too.  Any feeling is accepted, any question is answered.  I am so grateful for the palliative care team and the child life specialists that are walking with our family -- and at the same time I hate their presence in our lives.  A large package came in the mail from Children's full of keepsake art activities and guided family discussions.  It's beautiful and meaningful and brave.  And I hate it.

And yet we are settling into our new normal.  There will be good days and bad days and really no way to tell which ones are coming.  While I haven't stopped his therapies completely, I have reduced their frequency and made Jacob's comfort a priority.  He will still try preschool in September with the knowledge that he might only be able to handle once a week, or even just coming by for occasional visits.  We will follow Jacob's lead and adjust accordingly.  We are so tired, but I know this time is sacred.  

When Jacob is alert, I hold him close and tell him I love him more than all the water in the oceans and all the stars in the sky.  I tell him it's okay if he's getting tired.  When he screams in pain, I tell him I'm with him, that I won't leave him, as I draw up meds and try to shut down the problem.  And when he sleeps peacefully, I creep to his bed in the middle of the night and beg him not to leave me.  There will never be enough time with my precious boy.  But he has already suffered far too much and far too long.