One day at a time

Right now it feels like the Heart Center has a revolving door for kids that come and go and get their new hearts, and for some reason we just seem to keep going around and around while everyone else steps right outside.  In the last week, two of our sweet friends, Katelyn and Uriel, got their new hearts and that makes four total children that got here after Caleb and got their hearts before him.  When someone else gets The Call, so many emotions bombard me.  First, of course I am so thrilled and excited and we are hugging and cheering and celebrating with them.  And then I vicariously live through them for a while, imagining what it will be like when we finally get to call our family and friends and tell them the best news ever.  But later, when that day is over and I'm laying in bed trying to go to sleep, I ache so badly for Caleb to get a new heart himself that it feels almost overwhelming.  I get to the point of obsessing, as if I can make it happen if I just wish for it hard enough.  Sometimes I just stare at my phone thinking, "Ring, PLEASE RING, just ring and be the news that OUR heart is coming."  

Tomorrow will be six months that we've been here at Riley.  The only way to survive this is to do the exact opposite of the kind of obsessing I just described.  I have to put it out of my head, not think about whether today might be the day.  Otherwise, I start to sink into a very bad place of constant disappointment, bordering on devastation.  That's no way to live.  It's getting harder and harder to stay away from that place.  Sometimes I have to choose several times a day to focus on something else, to think about TODAY and not let my mind go there.  It's not just getting harder for me, it's getting harder for all of us.  Daniel is really behind with work and struggles to focus.  He is always exhausted from staying up very late at night after we're all asleep trying to get tasks done.  Jonah is getting harder to keep entertained and asks all the time if we can just go home for a few days.  And when we do go home, he wants to stay there.  But when he does leave, to stay with grandparents for a few days, it's harder for him to be here after being gone.  So we try to keep him here, with some sense of normal routine, as much as possible.  Fortunately he is still fairly easy to distract and we have to be purposeful every day to help him live in the confined space of Caleb's room.

Sometimes it seems like the person in this family who's handling this best is Caleb!  He has no awareness of what is outside this hospital, unlike the rest of us, so he has nothing to desire beyond his day-to-day life.  He plays with his toys, goes to music and art, takes walks, plays with his family.  He is still a happy and secure little guy.  And he's been very stable lately, with no changes to speak of.  He keeps us all going, makes us laugh and keeps us focused on what we have to be thankful for.  Yes, he's tethered to a pole and gets shots every day and the occasional picc line change, but he doesn't know any different.  I wish I could drink some potion that would make me temporarily forget the outside world and I could join Caleb in his oblivion.  

One day at a time.  I have to think about the good things about today.  My dad is coming this morning with my Aunt Karen, that's fun.  Caleb has music group.  I am going to eat a hot fudge sundae from McDonald's at some point.  It's sunny outside and warm and we can go outside.  This is how I have to live, get through today, focus on the things to be happy about and look forward to.  Please pray we can keep going.  Daniel and I are weary and starting to feel like we can't sustain this much longer.   Please pray for our strength to be renewed by God; we know our own efforts don't work anymore and He has to give us strength that doesn't come from ourselves.  Pray that He would provide for each of us what we need to keep going in this season of our life.

Bags under my eyes

When I say it's been an eventful week, by this point you should all roll your eyes and say, "Well, duh, what else is new?"  Because every week around here seems eventful.  Some of this week's events have been painful, and some full of joy. 

We started out this week with some crummy news... on Monday night we were told that by Tuesday we had to move out of our apartment at the RMH and back into a regular dorm-style room. They needed the space for a kid that had a kidney transplant and so we had to move.  We always knew this was a possibility but it was still a bummer.  As we were packing and moving on Tuesday, I was trying not to cry as I thought about how we would no longer have a private place to be together in the evenings.  Now we will put Jonah to bed and have to sit in the lobby.  All day I was trying to have a good attitude, a good perspective.  After all, the bombings at the Boston Marathon had just happened, and I kept telling myself, "THAT is bad news.  This is not a big deal.  I've lived in Africa for goodness' sake, I know that some people don't even have homes and I'm blessed to have a roof over my head."  And so on.  But you can imagine what it's like to take an entire apartment's worth of things and move it into a dorm room, where the 3 of us share one dresser.  It's a land of boxes.  Yesterday morning I couldn't find anything.  I found my toothbrush, but not the toothpaste.  I couldn't find Jonah's shoes. I was starting to get frustrated when Jonah managed to bring me back to the right attitude.  While I was huffing around, Jonah said, "Mommy, you need to be thankful for this room."  I am not kidding, he said that to me.  Half super-proud/ half wounded pride by having my immaturity pointed out by a 4-year old, I told him he was right and we were truly blessed to have this room.  By last night I didn't have to just say that, I felt it again.  We ARE blessed to have a place to stay right across the street and it will make our new house feel that much more special when we someday get to live there.

Wednesday however brought truly devastating news.  An hour after we'd gone to bed our phone rang and it was our dear friends Andres and Adriana, the ones who live in our old house, and their daughter Sofi was rapidly declining.  Andres was home in New Castle and I got up and went over to be with Adriana until he could get there.  My mother-in-law went to the house to stay with their son.  Thank God they had moved to New Castle.  When I got to Sofi's room, it felt so much like that last time I had to watch my friends holding their dying child in their arms, the day sweet Kiara went to heaven.  It broke my heart and we just sat and cried until her husband came.  Sofi died at about 3:00 in the morning.  Daniel drove Andres back to New Castle so he could get his son and come back. We love this family so much and it's so hard to understand why some babies get better and some don't.  What's especially difficult is that the two couples whom we've become the closest to here, and who are also strong followers of Jesus, are the ones who have lost their children.  I haven't really known how to think about this, and I don't really have any more words to say about it.  What is there to say?  This life is just so hard and confusing sometimes.

The following morning, we were scheduled to have the boys pictures' taken.  A nurse here at Riley had written a grant to have a professional photographer come and take pictures for families who have been here a long time and haven't had the chance to get pictures taken, and we were invited to do this.  I dragged myself out of bed after being up and crying most of the night and I almost had to laugh at the fact that this was the morning I had to be in pictures.  I decided I didn't even care.  I had meant to go home and get something cute for the boys to wear, but because we had to move unexpectedly, I didn't even have time to do that.  So the boys wore play clothes and I looked like a hag and it was the most fun I've had in a while.  It was actually perfect timing that we got to have a photo shoot that day.  And the pictures are great.  (I will post them soon!)  We all look tired and pale, like a family of vampires, but we look like a happy family of vampires.  Our smiles are huge and you can see how much joy we have as a family.  That's our life.  It's hard, and it's full of challenges and pain, but it's also full of laughter and happiness and so much fun. 

Please pray for our dear friends.  And if you want to do something to bless or help them, please let me know.  Also, just in case you are wondering, Caleb had a great and stable week.  When you see the pictures we had taken, you'll see how chunky he's gotten and how happy his life is. 

Yep, our car is totaled

As I am starting this blog post, I am sitting with my laptop on my lap and my stomach is hanging over the bottom of my computer and I can't access the mouse pad very well... third pregnancy.  It's like my stomach has just given up completely.  I'm not quite 10 weeks along and at all times I look like I just ate an entire pizza.  I actually should just eat an entire pizza.  If I'm going to look like this, I might as well have fun in the process.  

So we had a bit of a surprise this week.  Daniel was in a car accident.  He is completely fine, thank God, other than having whiplash and being sore.  He was right next to the hospital, stopped at a stoplight, and a woman was texting and didn't even notice the red light and just plowed right into him without even slowing down.  Both cars were totaled.  We are obviously just thankful Jonah wasn't in the car and that Daniel is fine... but now apparently we have to find time to buy a new car.  It's funny, because everyone that we've told about the accident has the same reaction: "Of all people, I can't believe that happened to you guys!"  Even the woman who caused the wreck.  While they sat for an hour and waited for the police to come, they struck up a conversation.  She is a doctor and was coming to visit a patient.  When Daniel told her why he was going to Riley and told her about Caleb, she started crying.  She was so upset that "of all people" this happened to us.  To which Daniel responded, "Why shouldn't it happen to us?  It's just a car."  He actually felt really sorry for her because she was clearly more upset about the situation than he was.  

Well she took full responsibility and we're going to get a check in the mail and I guess we'll get that minivan a bit sooner than we expected to.  It's not really a good time to be buying another car.  We had planned to buy a van before the baby comes, but not before Daniel is working full-time again.  He is only working half-time and getting paid half his salary, and of course I'm not able to work at all.  The settlement check isn't enough to buy anything in good shape since our car was so old, but we really don't want to add another monthly payment to our life right now.  We'll figure it out.  I know people get upset about the idea of another "bad" thing happening to us, but it honestly hasn't bothered us in the least.  In fact, it's BECAUSE of everything we've gone through that we can just kind of shrug our shoulders and say it's just a car, it's just money, God will provide and it's going to be fine.  When things like this happen, I realize I really have been growing all this time and the evidence is in my ability to react to the crazy things that happen to us with calm and a peace in my heart.

Besides, if something crazy is going to happen to anyone, of course it's going to be our family!  God just likes to keep us on our toes. :)  

Caleb goes outside... and his mommy cries about it

You know, I have not been blogging as much lately.  I haven't really felt up to it.  Partly it's because I've been struggling more and when I'm down, I don't really want to bum other people out too.  I start to worry that people just don't want to hear about my drama anymore.  But this week when I was meeting with my psychiatrist (more on that in a minute), she encouraged me that I need to blog at least 1 to 2 times a week because it's a good outlet for me to be honest about my experiences here.  It was good to be reminded about the importance of honesty.  It's why I like to blog; my hope has always been that by sharing these experiences, somehow others will find encouragement in what I'm going through.  So here's to a renewed commitment to sharing my life with you, the good, the bad, and the ugly.  And if you're someone who IS tired of hearing my sad sack stories, you can blame my therapist.

So yes, every Wednesday I have a new standing appointment with Dr. Kathy.  This week was my first time and now I wish I had been meeting with her long before now.  I didn't realize how much I keep to myself.  It was so good to talk with someone about how I'm doing without having to worry about making her upset.  I have been feeling depressed for several weeks and part of feeling depressed is simply never really talking about how I'm doing.  Then there's also that pesky little lie in the back of my head that says, "Come on, you're a Christian, you should be ok.  If Paul and Silas could praise God in prison, what's wrong with your faith?"  Well that's a load of crap.  I'm here to tell you that even very good and godly people go through harrowing and painful experiences (See: Jesus).  I've decided (with the help of a medical professional!) to go a little easier on myself and admit that this is getting harder and harder and that's perfectly normal.  So there you go.

It helps me to have things to look forward to, and we are trying to plan one activity a week that will be fun.  This weekend, Daniel's family all came to visit and it was really good.  We watched basketball together, and went to a good restaurant, and slept in a hotel.  Anything outside of this hospital is like therapy in itself.  Trying to do more things like that.  You can hold me accountable if you want.

One highlight of the weekend was that the doctors said Caleb could go outside for a walk when the weather is warm, as long as a nurse was free to go with us and it was at least 60 degrees.  So Saturday we took our son outside for the first time since October.  And he was pretty overwhelmed.  He squinted pretty bad and mostly just wanted to be held.  It took a while for him to even want to get down and walk. Watching him attached to his pole, with all his wires, with a nurse and Daniel trying to help him simply walk around, it upset me.  I know it was supposed to be so great to have him outside, but I just went off by myself and sat down and cried.  It just made me desperate for him to have a normal life, for him to be able to be free and run around and explore and not have to say, "Ok Caleb we have to sit down for a minute because your heart rate is too high".  After a while, he started to get into it, but when we went back inside he was fine with that.

On Sunday we went outside again, and this time was different.  On the way downstairs, I asked Caleb what he was excited to see when we went outside, and he said, "the sun".  As soon as we opened the door, he wanted to walk on his own and he took off.  (With him being attached to his pole, keeping up with him was tricky, but a good problem to have.)  He was so excited to walk up and down the 2 steps off the patio.  He hasn't seen steps in a long time and he had a really hard time with it, but he was so determined.  It was precious.  Then he started looking for ants and was totally fascinated when he'd find one.  He really enjoyed himself and put up a fight when we had to go back in.  I felt better about that trip; at least I could get a tiny glimpse of what it will be like when he DOES get to have a normal life again.  

That's a rundown of how we're doing.  Thanks for continuing to read about and care for our family!  This is a really hard time in our life and I deeply appreciate the fact that people are following our story.  Stay tuned if you're into hearing about how this family is going to keep on going, no matter what comes our way.

Pray for Caleb Day!

Hello everyone!  A friend has created an event on facebook tomorrow, and I want to invite all my dear blog readers.  Tomorrow, Thursday April 4, is Pray for Caleb Day!  And all that means is you're invited to wear your Praying for Caleb shirt, if you have one, and/or your bracelets too, and to say a prayer for Caleb's new heart to come.  Pray with your family, or invite your friends to pray too.  We're Praying for Caleb!