Not burned up

Well, it's tempting to call our "Pray for Caleb Day" a total wash. :)  That is a 100% joke, of course, because if I'm learning anything about how prayer works, I'm learning that answers don't always match requests exactly.  Yesterday there were thousands of people praying for Caleb and I woke up with a great expectancy that we would get The Call today that Caleb would be receiving a new heart.  Instead, our transplant coordinator and our social worker brought us the news that the hospital's new visitor policy would not only keep Jonah out of Riley, but also all visitors, period, even our parents.  That hit me like a tsunami wave and I literally had to sit down.  No more help.  No more company.  Our parents would not be able to see their grandson until who knows when.  That was a blow and for a few minutes I just wanted to sit on the floor and cry.  (What is it about being on the floor that makes crying so much more dramatic?)  But that only lasted a few minutes.  I gathered myself and wiped my face and went back to what I was doing, which was making rice krispy treats with Jonah at home.  Because you know what?  This is just another wave in this storm.  It's another wave that threatens to finally take me under, but it won't.  God is not watching this scene of my life and going, "Oh CRAP, I totally forgot about the flu epidemic, what am I going to do now?!"  He is still the one who sees the whole story, beginning to end, and He already knew that this particular part was coming.  He is still answering our prayers.  He is still good and He is still trustworthy.  He is with us and He hasn't let those waves take us under. 

"But now, O Israel, the LORD who created you says: 'Do not be afraid, for I have ransomed you.  I have called you by name; you are mine. When you go through deep waters and great trouble, I will be with you. When you go through rivers of difficulty, you will not drown!  When you walk through the fire of oppression, you will not be burned up; the flames will not consume you.'"
Isaiah 43: 1-2

Keep praying and believing, keep praising God with us.  And if you're worried that I am despairing, just know that I spent my morning with Jonah making a "Christmas tree" by draping a green blanket over a chair, wrapping a real strand of Christmas lights around it, and using Star Wars figurines as "ornaments".  In your face, storm and waves.

Specific prayer requests:
1- Pray for perseverance!
2- Pray for our parents' perseverance and encouragement.
3- Caleb's birthday is next Sunday, January 27- pray that Infectious Control would make an exception for our family to come so we can have a party.

A couple prayer requests

Hi there, friends.  Just a quick prayer request... we found out over the weekend that because of the crazy flu epidemic, Riley will be issuing a new rule that no visitors under the age of 18 will be allowed in the hospital.  Which means that Jonah can no longer be here with us.  If you read my last post, or any post, you know that having our family here together most of the time has been the best thing to keep us going.  We don't even know how to really explain to Jonah why he can't be here anymore.  It broke my heart to tell him today, when he was begging to go see Caleb, that he has to take a break from the hospital.  This restriction will be in place until March or April, and if Caleb doesn't get a heart soon, that means these boys won't see each other for potentially a long time.  I took the news pretty emotionally, knowing that now our little family will be split up even more and that we'll have to spend more time with one of us at the hospital and the other home with Jonah.  After spending some great time with God today though, I know that He will give us the strength to handle ANYTHING that comes our way.  But I am asking today that you pray for Daniel and for me to have extra patience and perseverance and for our sweet boys to not struggle with their new separation.  Also, if you could say a prayer for my own health, I would welcome that.  My arthritis is getting worse, but I don't even have time to think about that...

I listened to a song today that says this:

I have a shelter in the storm
When troubles pour upon me
Though fears are rising like a flood
My soul can rest securely
O Jesus, I will hide in You
My place of peace and solace
No trial is deeper than Your love
That comforts all my sorrows

Thanks for your ongoing prayers and encouragement!

Lessons learned from yelling at God

The highlight of my day was walking circles around the floor with Jonah and Caleb... Jonah had a football and he was kicking it.  It never got off the ground, just rolled into the wall over and over.  And every time he would kick it, Caleb would let out a belly laugh as though it was the most hilarious thing he's ever seen.  He almost fell down, he laughed so hard!  In fact, after 30 minutes of this, Caleb's heart rate was so high we had to take a break.  Laughing is such a great workout.  It was good exercise for all three of us.

This week has been a very good week.  Jonah has been here since Sunday and we've had so much fun being all together.  Caleb, I am so thankful to say, has gotten better.  His heart rate and breathing rate have gone back down a little and the doctors are not concerned about him.  He even had an echo which showed that his heart function has not gotten worse.  Whew.  We really needed a string of good days, and we've had them.

Last week I was pretty ticked at God.  I realize this might surprise a few of you, who have made the (laughable) mistake of believing I don't have Crappy Attitude days.  I have lots of Crappy Attitude days and watching Caleb struggle so much last week brought out some ugliness.  It started to feel so wrong to have to watch my son, who does not understand all this, endure so much pain and fear.  And the more I thought about the wrongness of it all, the more my anger rose, until I found myself just railing against God, yelling at Him about how He needs to stop all this, stop it NOW.  Really, Lord?  You're going to allow this to go on?  What is wrong with You??  My son doesn't deserve this, my son should NOT have to go through all this pain, NO PARENT SHOULD HAVE TO WATCH THEIR CHILD SUFFER!  And God's voice, His gentle, compassionate voice, spoke to my heart..."Don't you think I understand exactly what you're experiencing? Don't you remember that I know more about watching a son suffer than you can possibly imagine? You can't see the whole picture, you only see this little part. You are so much smaller than me and you do not understand. I love you. You are my child and Caleb is my child and I see the WHOLE picture, and it is good." And in that moment, I was so thankful that I am so small but that God can see the whole story, my story, Caleb's story, from the beginning to the very end. And I was so thankful that when He had to watch His own Son suffering, He allowed it. He allowed it because He knew infinitely better than we could that sometimes suffering is necessary. I don't understand suffering. I don't understand why the world can suck so bad sometimes. But I know that even though it may make no sense to me, I know that our Creator has a different view than we do, and that His ways are trustworthy.

Lord, I don't know how You did that. I don't know how you allowed Your Son to die in order to save the world. But I'm so thankful you did. And I pray that when I am freaking out and yelling at You about all the injustice in this world, that You would quickly remind me that this world is not all there is. Remind me that there is a bigger story being written and I am just one tiny line in a really long narrative. And remind me that You cause everything to work together for the good of those who love You and are called according to Your purposes. YOUR purposes.

Struggling

This week has been such a challenge.  A lot of crying, all around.  A lot of hand-wringing and nausea and inability to sleep.  This past weekend, Daniel and I had a getaway to our own house, including a date night, and my mom stayed with Caleb and it was wonderful (as wonderful as those nights can be when your son is in the hospital waiting for a heart).  Then on Monday morning the hospital called and I thought it must be The Call, but it wasn't that we'd gotten a heart... it was that Caleb had torn off the dressing of his picc line and would have to get a new picc line placed.  And they were not comfortable with the idea of putting Caleb to sleep, since the last time he was under anesthesia, his heart stopped... so they were going to have to do the procedure while he was awake.  Oh, and by the way, he has lost weight again and we're going to have to take some kind of action about that today after the procedure.  So we're throwing on clothes and rushing back to the hospital and I walk in the door exactly 2 minutes before they take Caleb back.  And it was AWFUL... they gave him a sedative to help calm him but he screamed and fought it for the entire hour and a half while he had to be tied down to the table.  It was  traumatic for him, to say the least.  They ended up giving him a second dose of the sedative and that turned him into a crazy person, yelling, crying, throwing things.  It was like my sweet baby went in to the room and the Incredible Hulk came out.  Later that day, the doctor came in and said that the time had come when we couldn't continue to let Caleb eat like a bird.  We decided to go with him getting nutrition in his IV at night while he sleeps.  After the day we'd had, I was like "whatever, just do whatever you think you need to".

The next day, yesterday, Caleb seemed to be ok mood-wise, but woke up with a swollen face and belly.  And throughout the day, we realized his heart rate and breathing rate were high.  He seemed exhausted, which made sense after the day he'd had before.  Our nurse was really concerned about him and the docs were keeping a close eye, hoping that his body was just adjusting from the new IV fluids.  All day, we were nervous wrecks... what's wrong with him?  Is he ok?  Is this just how his body reacts to this new IV of nutrition?  We just hoped that by the next morning he would be back to "normal".

This morning I sat down with our nurse and she explained that the doctors are still hoping that Caleb's body is just adjusting to all the additional fluid but they don't know if that's what's going on or not.  It's hard to know when I should be worried... because the doctors can't say, "oh, it's nothing, he's fine".  Because he's not fine, he's a really sick kid.  His heart won't get better, it'll keep getting worse and even though his decline is gradual, it still scares the crap out of me.  Because I know kids die every year waiting for the heart that never comes.  I'm so tired of watching him get sicker and sicker and knowing that nothing is going to change that unless he gets a new heart.  He's got to get a heart.  

Today I want to ask you all to pray with extra faith and belief.  We're praying, praying, praying that God would move in the hearts and minds of any family that is faced with the choice of donating their own child's heart, that they would say yes.  Pray for Caleb today!  Pray that God would provide for him.  Pray that Daniel and I would keep going with strength and perseverance.  Pray!