One Month Ago

 One month ago was the last night we had with our little man.  He was breathing hard and wheezing, but seemed to be doing better.  Jason and I got a few hours sleep while his parents were there late at night/early in the morning.  The nurses were waking Caleb up (if he was asleep, which wasn't very much) every 3-4 hours to do whatever procedure that was scheduled.  (x-rays at 5 am? Really people?) Anyway, we were not yet aware that this would be our last night on earth with our son.  The previous
day had been very stressful but he finally seemed to be breathing better, it looked like he had turned a corner.  And he had.  But his brain was dying, making it unable for his lungs and heart to function properly.  No medical interventions can help that.  Well, none that we were willing to try.  Jason and I are still totally confident and peaceful about the decisions we made in those last days.  Of course we would want Caleb around longer, but at what cost to him?  We didn't want to see him suffer without cause.  And the only cause would be selfish reasons to keep him here, not because he actually had a chance at recovery.  We chose to let him go peacefully and surrounded by his family.

I have said before that God was preparing each of us in different ways.  For me it was in lots of little thoughts, which at the time I pushed aside thinking I wouldn't have to deal with those things for quite a while. But another way he was preparing me was through a book, Jesus Calling  by Sarah Young. I had heard of the book a few months before, but my Mom actually bought me a copy and brought it over at the very end of August.  September 1st was the first time I read it.  I didn't read it every day, but when I did there was always something that struck a chord with me.  I said a few times during those first weeks in September that I felt like Caleb was slipping away.  I had a feeling something wasn't right, and yet I never imagined he would actually be leaving this earth so soon.  But here are a few excerpts of things I read:


September 1
     "....When you encounter rough patches along your life-journey, trust that My Light is still shining upon you.  My reasons for allowing these adversities may be shrouded in mystery, but My continual Presence with you is an absolute promise.  Seek Me in good times; seek Me in hard times.  You will find Me watching over you all the time."

I remember reading this out loud to Allison as our daily devotion and I almost couldn't make it through.  I got choked up.  Each day that I read was like this.

September 5

     "....Together we will face whatever each day brings; pleasures, hardships, adventures, disappointments.  Nothing is wasted when it is shared with Me.  I can bring beauty out of the ashes of lost dreams.  I can glean Joy out of sorrow, Peace out of adversity."

September 8

     "Accept each day exactly as it comes to you.  By that, I mean not only the circumstances of your day but also the condition of your body. Your assignment is to trust Me absolutely, resting in My sovereignty and faithfulness.
     On some days, your circumstances and your physical condition feel out of balance; The demands on you seem far greater than your strength."

September 9
     "Walk with Me along paths of trust."
On this day I actually looked up the verses at the end of the reading and wrote them in my journal.  They were perfect.
Isaiah 26:3-4
"You will keep him in perfect peace, whose mind is stayed on You.  Because he trusts in you.  Trust in the Lord forever, for in the Lord, is everlasting strength."
Psalm 9:10
"And those who know Your name will put their trust in You.  For You , Lord, have not forsaken those who seek You."
Psalm 25:4-5
"Show me your ways o Lord, teach me your paths.  Lead me in your truth and teach me.  For You are the God of my salvation; on you I wait all the day."
Proverbs 3:5-6
"Trust in the Lord with all your heart, and lean not on your own understanding; in all your ways acknowledge Him, and He shall direct your paths."

September 9 was a Sunday.  We had actually been in the hospital with Caleb on Friday and Saturday (the 7th and 8th) but didn't really tell anyone.  It wasn't an emergency situation, and we kinda felt silly for even being there.  I had received a call from a nurse on Friday afternoon to see if we could change an appointment we had with the MDA clinic the following week.  We were also scheduled to see a Pulmonologist at the beginning of October.  I talked to the nurse and told her that we were seeing some changed in Caleb's breathing and while there wasn't one specific thing that cause me to worry, I just had this feeling that things weren't right.  There were 3-4 minor things that had been happening that week so she and I talked about it, she asked me some questions and then she said she would talk to the P.A. and call me back.  (I had just asked if we could move up the Pulonology appointment or if they could run some tests at his MDA appointment) The nurse called back and said that we should go to the E.R. since it was a Friday afternoon because the P.A. was worried that Caleb was having apnea spells.  To make a long story short, his breathing was fine the whole time we were there and everyone kept asking us why we were there.  I had to tell his ENTIRE life story to no less than 6 different Doctors, and they wanted to keep us until Sunday or Monday! (the Pulonologist wouldn't be there until Sunday and if they wanted to send us home with equipment it wouldn't be ready until Monday) Our Mito Specialist ended up coming to see us on Saturday around noon and we told him what was going on and we all agreed he was fine and needed to go home.  The specialist didn't want him getting sick from being at the hospital.  So we got out of there on Saturday early evening, without the slightest inkling that we would be back just over a week later.  We were glad to have seen the specialist but other than that figured it was a waste of time.  Now I know that my intuition was right in that his breathing was changing, but not drastic enough yet, and nothing they could see yet.  But the visit also told us that his Leigh's was moving so quickly that it was only 2 weeks from when we started seeing changes to his lungs shutting down.

It was only 2 days ago when Jason showed me the reading from September 19th.  I couldn't hardly believe it.  Ready for this?

September 19 (the day Caleb went to be with Jesus)
"There is a mighty battle going on for control of your mind.  Heaven and earth intersect in your mind; the tugs of both spheres influence your thinking.  I created you with the capacity to experience foretastes of heaven.  When you shut out the world and focus on My Presence, you can enjoy sitting with Me in heavenly realms.  This is an incredible privilege reserved for precious ones who belong to Me and seek My face.  Your greatest strength is your desire to spend time communing with Me.  As you concentrate on Me, My Spirit fills your mind with Life and Peace.
    The world exerts a downward pull on your thoughts.  Media bombard you with greed, lust, and cynicism. When you face these things, pray for protection and discernment.  Stay in continual communication with Me whenever you walk through the wastelands of this world.  Refuse to worry, because this form of worldliness will weigh you down and block awareness of My Presence.  Stay alert, recognizing the battle being waged against your mind.  Look forward to an eternity of strife-free living, reserved for you in heaven."

How amazing is that? Every time I read it I get a little more from it.

After the disappointment in a previous favorite song of mine, (see post HERE) I was glad to hear this song.  It means so much more to me now than it ever did before.  I'm not looking to leave this earth anytime soon, but man I'm excited to see my boy again someday!

Love,
Jessica