Sunday, May 17, 2015

Difficult days

Well, with near miss of the PICU, Lillian survived another round of pneumonia.  It is so difficult to watch her suffer.  As soon as I enter the room, my eyes are on monitor watch and I don't know about other moms, but for some reason I just can't peel my eyes off that monitor.  Heart rate, breaths per minute, pulse ox....and when you are sitting in the room alone with a child that is nonverbal and quite honestly, too sick to care to interact, you are fixed on the monitor.

On top of hospitals being uncomfortable for your child, it is also uncomfortable for parents.  It's isolating and depressing, escpecially when she is getting worse instead of better. Not to mention I'm already sleep deprived and going on x amount of days of worry. I kept telling myself that I knew, I knew there were multitudes of people praying for my sweet girl...I prayed.  You know what I wished?  I wish  I could take even an ounce of my strength and pour it into her.

I'm so thankful my Mom was able to come a couple afternoons and sit with me and Matt came down a couple hours with the help of some friends.  And if ever again someone offers to come sit with me and pray, I will NEVER turn it down.  It is so hard to be alone in the hospital, maybe some people prefer it that way, but I'm telling you, I could have used some prayer intersessors with me.  In body, not just in spirit.

So we came home after our six days and I knew it was probably wise to talk with the girls about how they were feeling.  We had just finished dinner and I went around the table and asked them each what they worried about when Lillian got sick. One of the girls wouldn't even speak.  One of them said what they were all thinking...they are afraid she will die.  One girl said she worried about money and my stress.  I sat here struggling with tears in my eyes trying to speak over the lump in my throat.  I told them I knew without a shadow of a doubt we would never go hungry or be homeless.  All I could say about the death part, is that it would be so difficult to walk through.  I encouraged them to talk with us when they need to and if they didn't feel they could talk to one of us to talk to someone else.  I told them, that in truth, each of us are the only ones that know what our life is and what our walk is like with Lillian.  I told them that we loved them and each of them is just as important as the next one and we needed to make sure everyone got through these times relying on each other.

There are no easy paths on this walk, but this IS our path.

We had a week with Lillian trying to rebuild her stamina and then this past Monday Ezekiel woke up with croup.  We are praying she does not succumb to anything as a result of this or anything she may have encountered while in the hospital.