Pray for Caleb Rally!

This is so exciting!  I want to give you the details and invite you to attend the Pray for Caleb night.  First of all, let me just tell you that it is OBVIOUS God is in the planning of this event.  It's going to be a great night and I can't wait!  Second, if you have a picture in your head of this event being a long night of sitting still and listening to someone pray, that is NOT what it will be like.  Actually, it will be mostly a night of worship with great music.  We want this to be a time where people come together to praise God for who He is because that is more important than any request we can make of Him.  There will be lots of music, and of course there will be a guided time of prayer for Caleb too.  Then there will be food and fellowship where we can have a time to see you and hug you and the people gathered can enjoy each other's company.  Kids are welcome!  And there will be childcare available for babies, toddlers and preschoolers. 

The details are:  Saturday September 14th at 6:00.  Location is First Baptist Church, which is located at 709 S. Memorial Dr., New Castle, IN.  

We hope to see a crowd!  I would LOVE for you to share this with your church, announce it in your bulletins or on Sunday mornings... invite people you know that have prayed for Caleb.  If you have a Pray for Caleb shirt, wear it!  We plan to take a picture from the stage that night of everyone there.  

Spread the word!  Mark your calendars!  We'd love for you to join us for what we think will be a really special night.  Looking forward to seeing you there! 

Pictures and an update

The Pray for Caleb rally is coming together... quickly!  And easily!  I'm so excited that lots of people want to come together to pray for Caleb.  It's OBVIOUS to me that this little idea was actually a God thing and I can't wait to see how He moves.  I have a tentative date and time, but I will post it when it is definite.  The location will be at our home church, First Baptist, in New Castle.  Please be praying for this event!  It will be a great night of prayer, a time to praise and worship God, and I'll be sharing a little testimony about what God's been doing in our family. Then after the service we will be sticking around for some fellowship and snacks... we want to actually be able to chat with those of you who come!  Childcare will be provided for kids up to age 4.  We hope to see hundreds of friends there, a sea of Pray for Caleb shirts, faces we know and new faces as well.  Date and time TBA in the next couple days.  Then you can spread the word and invite your own church and any friends that pray for Caleb and want to participate in an awesome night of people coming together to pray and worship.

Also, here are some pictures because I forgot to post them last time.  Thanks for your support for our family!  

  

Heavy thoughts... and an idea

There are days it's obvious I'm in a "who cares anyway" kind of mood.  If you were observing me this morning, you would have seen me wake up, decide to just put on yoga pants instead of take a shower and get dressed, eat chocolate chip cookies for breakfast, and forget to brush my teeth before I headed over to the hospital.  Yes, today is a day I don't have much motivation.  

I've been a little blue for the last couple days, ever since Jonah and I were home for a night.  See, I was doing some organizing at our house, because I realized that we can move all of Jonah's things home, in light of how much time he'll be spending there when preschool starts next week.  (It will be really weird to NOT pack a bag for Jonah to go home, but for him to actually pack a bag to go to the hospital instead.)  Anyways, so I opened the drawers in the dresser in the boys' room, and the first two drawers had almost nothing in them, just a few things leftover from last year that never made it to the RMH.  When I got to the third drawer, I opened it and it almost took my breath away... it was all of Caleb's clothes, perfectly folded and untouched, exactly the way we left them when we left for the hospital on the morning of November 1, 2012.  His little jeans, sweatshirts, button-up shirts.  I just started crying as I lifted them up and looked at them, the clothes that are now so small, clothes he was just starting to wear last year as the weather was cooling off.  In the hospital, Caleb wears the same handful of comfy outfits and jammies, all short sleeves because of his picc line, clothes that we don't mind if he pukes on, which he does almost every day.  So all his old "regular" clothes were just sitting there, untouched.  It felt like a death had happened, and all over again I felt like I was mourning; not mourning because I've lost my child, but mourning how much of his life has been lost to the hospital.  Mourning the "normal" life I had dreamed of and hoped for him.  Mourning all the things Caleb can't do and places he can't go.  

As I sat and cried with all these little clothes in my hands and lap, Jonah came in.  He immediately came over and put his hand on my lap and asked, "What is it, Mommy?"  And I told him, "These are all of Caleb's clothes that he didn't get to wear, and I'm sad because I just want him to be able to be here with us and do normal things with us."  And Jonah kissed me and said, "Well, you could just bring the clothes back with you to the hospital."  And that made me laugh, and then Jonah said he needed to get back in his rocket ship and he skipped off.  I am so thankful that he brings me a lot of laughter in moments that would be so heavy.

I have been a little sad since then.  I just want Caleb to be able to be WITH us.  It didn't help that when I got back to the hospital yesterday, Caleb and I were chatting and he said to me, "I want to go to YOUR house."  I started crying again.  I tried to explain that MY house is actually HIS house, but he looked really confused and said, "No, I want to go to YOUR house" again.  And he asked me where my house is.  It broke my heart.  Even though the truth is that my house IS his house, it's easy to understand why that makes no sense to him because he's never even seen that house.  He's never ridden in our van.  He doesn't know what I mean when I talk about his play room or his bunk bed.  And that has been hard lately.  It's wonderful that he is stable and he truly is happy and secure in his environment here in the hospital... in fact, he was scheduled to go down to get an echo today, and when we told him we were going to get an echo, he started cheering.  He is happy here.  But he's not with us.  He's not really a part of our world.  We enter and exit his world every day, but he doesn't know anything about what we do away from him.  And that makes my heart heavy.

I have had an idea in my head that I think I really want to see happen.... I would love to have a Pray for Caleb rally.  A night where people come to pray for Caleb and for us and also to worship together, praising God for who He is and what's He's done, and coming before Him to plead for Caleb as well.  Would people attend something like that?  What an encouragement for us that would be.  If you would be interested in coming to pray with us on Caleb's behalf, or would be willing to help with the event in some way, would you let me know?  My email address is kakinnaird@hotmail.com.  If there are people would do this, I want to see it happen.  

Thank you for your wonderful prayers and encouragement.  Even though we often feel far away, we know how much love and care there is for our family, and we appreciate it so deeply.  Keep praying!  And give me some feedback about a Pray for Caleb night.

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.

Miracles indeed

Some people might have already seen these pictures on facebook, but I couldn't help posting them again.  This so perfectly captures my boys.  If you have spent any time at all on the Heart Center at Riley, you have certainly spotted a couple miniature superheroes who roam the hallways with various capes and masks every day.  I love these two people more than I can even describe and if I ever start to feel sorry for them for the life that they have, I can look at these pictures and realize they're doing just fine.  

This past week was a pretty good one, nothing very exciting to report, which is just fine with us.  Boring is always better than eventful, because "eventful" usually means there's something to worry about.  There was absolutely nothing to worry about this week, which is pretty miraculous.  I don't know if people realize how big of a deal it is that Caleb is so stable.  All of our doctors have said that if they had been told 9 months ago when we arrived that Caleb would first of all still be ALIVE, and second, be so stable and growing and doing well at this point, they wouldn't have believed it.  The picture below shows what Caleb looked like the week we arrived at this hospital, the week his heart stopped and it took 4 minutes of chest compressions to get him back....

I barely recognize that skinny kid from last year!  Considering he has congestive heart failure, it's AMAZING that he has survived and thrived since arriving here last November.  People say to me all the time that they don't understand why God hasn't answered our prayers and why Caleb still hasn't received a new heart... but we know that God HAS answered our prayers, because He has sustained this little boy and kept his heart beating, and even given Caleb a spirit of JOY while he lives and grows up in a hospital.  He is such a fun kid to be around.  This week, his favorite game was pretending we were in a boat.  He asked me one day if we could make a boat, so I used some little kiddie chairs and floor mats and we sat inside the little structure that was our new boat.  Caleb sat down right beside me, hip to hip, and looked up with a grin on his face and whispered, "We're hiding, Mommy".  I whispered back, "Who are we hiding from?"  And he said, "We're hiding from hyenas.  Hyenas are coming."  Obviously he is somewhat of a genius because if you ask me, a boat is a perfect place to hide from hyenas.  So yeah, boring weeks are pretty miraculous and it is plain that God has indeed been right here with us.  And now that formerly sick-looking kid looks like this:

We would appreciate your prayers as we get ready to adjust to a new schedule.  Jonah will be starting pre-school in a couple weeks and Daniel and I have decided to start spending more time at home in order for Jonah to start to have some kind of normalcy again.  I will take Jonah home for Monday and Tuesday, Daniel will be home with him on Wednesday and Thursday and then we will spend the weekends at the hospital all together.  This minimizes the amount of time our kids have to be away from each of their parents, but means being away from each OTHER a lot more.  Honestly, Daniel and I have been really fortunate to not have to spend more time apart than we have.  We chose in the beginning to make every decision we could to keep our family together instead of one of us at home with Jonah and one at Riley with Caleb.  And now we're going to try something different and just see how it goes.  After this long, I am excited to give Jonah the opportunity to be back in the real world more often.  But we need prayers for perseverance as we adjust to more time apart all around.

I have missed blogging lately; as I've taken less time for media and entertainment, I have just been on the computer so little.  But I realize that so much is happening in my head and in my heart (if not in this hospital room) that I want to share.  So I will try again to be a more consistent writer.  Thank you for continuing to be a part of our life, thanks for following along and praying for us.  I am really excited about the next blog I plan to share.  Stay tuned for what I promise will be at least mostly coherent ramblings about some stuff I'm learning about being a good friend and neighbor.  And I plan to include a picture of me and my preggo belly so you can see how much Lucy is taking over my body... yep, baby girl's name is Lucy and she is making me huge.  (I think Caleb and I should have a competition to see who can put on the most body fat in the next three months.  I hope he wins.)  Talk to you soon!