Day #283...and feeling isolated

We have started a little tradition lately here at the hospital… Mondays are “pizza and a movie” night.   Tonight was pepperoni and Despicable Me and I realized we have reached a milestone: my boys can finally sit through an entire movie.  Unfortunately, Daniel and I have both been suffering from heartburn lately, me because I’m pregnant, him because of general stress, so I’m thinking maybe we should change it to “salad and a movie night”.  But that definitely doesn’t sound as fun.

We need fun stuff like that to look forward to each week.  Even though Caleb is pretty stable, this is still so stinking hard and we need to do fun and special things together as much as possible.  I felt kind of gloomy when I woke up this morning.  I think I was just feeling the typical Monday letdown effect, realizing that yet another week has passed with no new heart for Caleb.  A doctor told me this morning that we’ve been here in the hospital for 283 days.  Can you believe that?!  That seems so crazy, like it should be someone else’s story.

I think part of the gloominess I feel today is because we had such a great experience yesterday in our hometown and it was hard to come back.  Two of our dear friends were getting baptized at our church and had asked us to come home so we could be there.  So we went to church yesterday for the first time in months and it felt SO good to feel like part of a community again.  One of the hardest things about the last year of our life is how isolated I feel most of the time.  I know people care about us and pray for us, but we almost never see anyone besides our parents and hospital staff.  Yesterday I was like, “Oh yeah, this is what we’re missing” and I intensely wanted NOT to come back to the hospital, unless it was to unhook all of Caleb’s cords and machines and take him back home with us.

I miss fellowship.  I miss worshipping with other people.  I am more dependent on God than I have ever been and my relationship with Him is good and growing, but I feel like I am mostly on my own, with the obvious exception of Daniel.  He and I have been praying together every night and we share things we’re struggling with and learning, and how God is speaking to us.  Without this tiny little church of two, I don’t know what I would do.  I have always been a leader of various ministries at our church, and am usually the one teaching or speaking or counseling others.  More than any other time in my life, now I need people to minister to me. Most of my isolation is just part of my circumstances, something that can’t be helped, but maybe some of it could be.  Maybe I just need to do a better job of asking people to bring fellowship to me.  Maybe I should just call people and say, “Hey, would you come here and hold my hands and pray with me and maybe share some wisdom from Scripture and encouragement?”  God does seem to like it when people actually admit that they need help, whether of Him or of others.  There is something about asking for help, asking for the presence of others, that is actually powerful, even though it doesn’t feel good.  Who wants to be in that position?  We’d always like to be the ones doing the helping, not the ones being helped.  But I bet the humility it takes to reach out and ask for help pleases God a lot, and probably opens us up to receive more from Him. 

If you are a person who prays, would you please pray for us as we battle feeling isolated?  Pray that when we start to feel far away from the people we love, that we would look to the One who loves us more than anyone.  Pray that Jesus would fulfill every need we have and that our closeness to Him would be the sweetest relationship we’ve ever had!  

And more pictures next time, I promise.