It's Hard For Him

This is Jonah after a recent platelet transfusion.  He was so tired he feel asleep in the lobby of Lurie while we waited for the RIC shuttle to pick us up.  His wheelchair doesn't have a chest strap because he doesn't usually need one.  On this day, I had to hold his torso up so he didn't fall out of his chair he was so tired.

This weekend Jonah's counts have started to recover.  We haven't drawn labs to verify, but we can see it as his appetite returns, his attitude improves, his desire to walk resurfaces and he wants to play. Every round I have to remind myself - as his counts are, so Jonah is - when they're down, he's down, when they're up, he's up.

The downs are getting harder for him though.  He's been on this rollercoaster of ups and downs for 6 months, so it makes sense, but it's still hard.  For 185 days, he has been a patient.  "They" have laid out the "have to" activities for him - wear knee immobilizers for 30-60 min a day, wear an eye patch for at least an hour a day, apply eye ointment every 3 hours while awake, take meds 2-3 times a day with up to 6 meds at a time, stand for therapy, walk on the treadmill for therapy, brush his teeth or at least rinse with spicy mouthwash, take a shower or at least conceded to a bed bath, have his central line dressing changed at least weekly, eat anything.  He has so little control over all the things he "has" to do.  When he's down, everyone of them is a fight to some degree - he feels crumby and so very tired.  It's easy, in those moments, for me to get really frustrated, as my days are peppered with small squabbles over important things, then I think about how hard it must be for him.  As I lament about not having control over being able to make summer plans, Jonah doesn't have any control over anything.  When he feels good, his amiable kind spirit plays along, but when he doesn't - he's angry and annoyed and frustrated.  The cracks that he feels are different than the rest of us, but he's feeling them too.

As we go into cycle 6, we expect a big down for weeks.  Please pray for my boy - that in this big down his spirits are protected, that we can navigate all the "have to" activities full of grace, compassion and patience.  That we will find the sweet among the bitter, that we will be creative in navigating the hard and that God, who is able to do immeasurably more than we ask or imagine, would be our ever-present help and source of great comfort.