Halfway Home

Here is Jonah - half way done with radiation this past week.  Liz's husband, Dan, is a firefighter so they had a bunch of the guys at the house holding up "15" signs to symbolize the number of treatments Jonah has left.  This has been his favorite sign so far.

This is what being halfway home looks like- the kids ready for bed and Anna reading a bedtime story.  She is perhaps the model of how to be a good sister to a sick sibling.  Her heart has grown so much through this experience.  

The end of treatment - we're almost there.  This goal line that seemed an eternity away when we started in July is now just a few weeks away.

A little over a week ago, Jonah was finally released from his 275 day inpatient hospital stay.  Radiation treatments still persist, but Jonah gets to sleep not at a hospital while they continue.  What that means, is that he gets to sleep at home on the weekends!  There are no day passes that expire at 8pm and threaten to turn him into a pumpkin if he's not back in time.  We can put all 4 kids to sleep in their own beds.  There is something so comforting and yet foreign to that feeling.

We are actually doing a graduated return home, with Sunday-Thursday night spent at Ronald McDonald house.  This decision is pure logistics as Jonah has to be at the Proton Center at 6:45am every morning (M-Fri) and at that hour, a 15 min drive seems better than a 45 min drive.  There is a disjointed nature to this graduated return, but there is also much good that comes from it.

Being home together is how it's supposed to be - and we all recognize it.  It's reducing the sadness that separation brings, it's giving us more touchpoints throughout the week to be a family.  It's giving us a chance to take all those therapy skills and put them to good use, but it's not all heart and roses though - it's hard work.  In a normal world, 4 kids can be a bit crazy, but in this world, sometimes crazy doesn't do justice for what is happening in our house.  Although Jonah has come a long way, he is not independent, but he is busy.  He is used to 1:1 care and is not patient, which prompts him to try and do things by himself - like get off the couch and walk to his wheelchair - which are not safe based on his abilities.  We are also navigating a new world of discipline as he is used to always getting his way on his timetable, and that doesn't work in a family.  All of these special nuances combine with having 3 other kids - and well, let's just say there a lot of ups and downs these days and often they're pretty messy.  The thing is - this is what we have to do to be a family again, and so just like everything else, we move forward one day at a time, one step at a time - and we find gratitude that God would orchestrate a graduated return home to help us all.

Ways that you can help us during this graduated time are really quite simple:

* Pray that we are able to extend abounding grace to one another as this is a season unlike anything our family has experienced - where grace needs to freely flow from spouse to spouse, parent to child, child to parent and sibling to sibling.

* Pray for our overall transition.  We are learning how to be the same family again but different.  Everyone has to refigure out their place and relationships.  I see this especially in the children as they try and figure out how to relate to each other when they're all together and when they're 1:1 with Jonah (this figuring out is a 2 way street and I see Jonah trying to figure it out also).

* Pray for Jonah to eat.  I know I've asked this before, but it's still there.  Since coming off of TPN, he's lost 6 lbs.  We've got a little bit of wiggle room still, so we're trying some new meds, and the team is hoping that the more time he spends at home the more his appetite will recover.  Last week his weight was stable for the first time since coming off of TPN.  Any good scientist will tell you that 2 data points does not make a trend, so our prayers are that we observed the start of a trend and that perhaps even he'd gain a 1-2 lbs.

* Pray for our endurance and stamina.  The pace of life together is busy.  Jonah has a lot of meds, line care, transfer assistance, dressing help, etc - but we also have all the normal stuff of home - laundry, cooking, cleaning up, stories, games, playing outside, overseeing homework, refereeing squabble, kissing ouchies, emptying the garbage, and the list goes on and on.   After mostly sitting around a hospital for 9 months, this pace is tiring.

And in closing:

"Now to Him who is able to do immeasurable more than we ask or imagine, according to his power that is at work within us, to him be the glory in the church and in Christ Jesus to all generations forever and ever.  Amen."
(Ephesians 3:20-21)