Monday, August 12, 2013

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.


  1. Katie, first of all I can't imagine how isolating that must feel to be there every day! I was just reading this and thinking of my sister and all the other moms (and dads) who I'm sure are also walking through similar circumstances and feel so very isolated like you. My sister and her husband have spent just a few weeks at a time, or even days at a time there with my nephew, but I know they feel isolated in just the short times they are there, so I can't imagine how you must feel after 283 days!! It also makes me think of all the NICU families that I see every day that are in similar situations. It struck me that there really should be something for parents like all of you to gather and fellowship in hospitals. Thank you for sharing this because it's really convicting me that in those moments when my sister is in the hospital with my nephew I should be more aware of that and maybe bring the fellowship to her. As a nurse in my hospital, I'm sure it wouldn't be allowed for me to do this, but a hospital church could really be an idea. Thanks Katie!! Praying for you guys!

  2. I was just writing in my devotions this morning about how God did not intend for us to walk this walk aloe. I am sorry this is hard for you right now I pray that you will find more believers in the place you are and maybe can do some teaching and counciling (friendship). I remember the days when I would be so excited the home nurses were coming because I felt so alone mentally and physically. I will pray for you!

  3. You aren't alone. I have a 2 yr old who was transplanted at 5 months old. You will get through this and when you get home, you will feel sooo much better! There is nothing like getting into your own routine and somewhat normalcy. Praying for your sweet family!

  4. I am praying for you and your family.
    xo rachel

  5. Praying for you and your family

  6. I have been compelled at the craziest times to pray for you lately, like driving to work! :) Last week I wasn't sure what I needed to pray but the Spirit came over me so I just prayed. The amount of time you have been there was heavy on my heart just then but God said 'trust me', and I do! The same week one of the girls who works for the treasurer told me they had seen you at Q'Doba. So we cried a little over the fact that our normal is not your normal right now, and agreed that He is in control. Oh Katie, we serve an awesome God, and you really touched on something when you talked about how you were in charge of so many ministries before. I have often thought of how I have always looked to you for inspiration, and you are years younger, but somehow much wiser. Now we can pray for you to lean on us for a time. I am here dear girl, praying in the hallway, or car as the case may be! Love you all, Miss Pam

  7. It must be hard to endure over time. Thankfully you have a God that is loving and faithful. I pray you can find peace as well as relationships at this point. We are created for relationships. May today be a new and refreshing day in your life. May God give you all you need and provide you good health and great blessings.

  8. Katie, it was so nice sitting with you and Daniel at lunch Sunday. Watching Jonah and Thomas playing, it just seemed like a " normal" Sunday after church. I can't describe how good it was to see the three of you !
    Continued prayers for peace and comfort on your "gloomy days" and all the others in between.
    Love you all so much !