I tried to make the headline a little softer but really, that’s what we’re talking about here.  Before we go “there” though here’s an update on Trey.

1.  Here is what true joy looks like.  This is from dinner ON his birthday, after Chuck E. Cheese, the day after his actual birthday party.  Trey always yells, “1,2,3,4” after we sing the traditional “Happy Birthday” and we go to the clapping version.  This weekend  he started to count only to 1.

2.  The weekend was great, he and “the monkeys” did a great job of holding it all together and having a blast.

3.  Trey grabbed a box (in which Aunt Marcie had wrapped her gift) Sunday morning, filled it with things from around the house (mostly within the fridge) and gave it to Rachel in bed for her Mother’s Day gift.  It was hilarious and heart warming/breaking to see.

4.  On the way home from the hospital Monday (everything went smooth and quick) he stated, “I have a coin in my belly.”  Rachel asked, while driving, how it got there and he replied, “I was playing with the squinkies, put a coin in my mouth, it went down the hole, and now it’s in my stomach.  He had an x-ray Tuesday morning before Physical and Occupational Therapy, all clear.

5.  Trey has a new favorite thing to do at church.  No, it’s not worshiping.  It’s not praying out loud or even listening to a bible story.  No, it’s giving himself a brushburn from the carpet on the top of his head.  That would be two weeks in a row now.  The ladies there are very responsible and were actually watching for it this week.  Sorry ladies, faster folks than you have fallen short of thwarting that boys efforts.

6.  In church on Sunday we were once again singing Lay Me Down.  When it got to the point where we sing, “I lay me down I’m not my own.  I belong to you alone.”  I changed it (without really meaning to) to “I lay him down he’s not my own.  He belongs to you alone.”  Interesting that God used the same song in a different way this time, much more focused on Trey than at the concert (as noted in the post I linked above).  Regardless, I wept.

Sooooooooooooooo, (here comes the heavy but encouraging and liberating part) how do you find peace and security while having a terminally ill (diagnosed) child?  Most of you are probably not facing this EXACT trial but we all know that everyone has a story.  Maybe you: lost your job, are dealing with addiction (yours or a loved one), just can’t pay your bills, have a child who’s gone off the deep end, have a parent who’s gone off the deep end, lost someone so close to you recently, are dealing with sickness and/or death of a loved one, or simply are scared and full of fear that any and’/or all of the above may happen to you.  How do you find security/peace in these times?

Given what I shared in my last post allow me to use our life as an example.  The other day we were sitting around the dinner table and sharing our day.  Trey said something quiet and very intimate.  Admittedly, I don’t remember what it was.  After dinner I said to Rachel, “You know, he’s getting so articulate and observant.  He will know, he’s going to know.”  That has long been one of  our “fears” or concerns about how long he lives.  I would ask the question, “Is it better that he lives just long enough to know that he is dying?”  The answer is “YES” but then…woof.

So, as I have come to realize this truth and to begin to try to process it, I am reminded of a conversation I had with a woman at a church where I spoke this fall (could have been late summer).  She had come up to me and said, “God put it on my heart to tell you that it will be ok.  I’m not saying…I’m not predicting…you know.  I feel He just wants you to know that it will be ok.”  Immediately after that another woman told me how her son was in an accident and was all but brain dead for 20 years and finally passed away a few months ago.   She told me how beautiful it was, though very very hard.  She mentioned that it was an honor to be there for his first and last breath.  I took the two conversations to heart and believed them to be purposely linked.

I was reminded of all of that as I began to fear the coming possible scenarios regarding Trey.  I thought of how God has been there for us so many times through so many people from the days before his diagnosis until now.  Why would it end?  Why would He stop now?  Will it be horrific?  Probably (or definitely) yes.  Will He be there and bless us through it?  Yes.  I choose not to dwell on the pain and loss but rather His provision through the times that lie ahead.

We have a fear that the doctors are right.  We fear what that will feel like and the impact it will have on our family and so many others.  There will be sadness and suffering and nobody wants that.  It will be horrific.  Yet, rather than focusing on that, we have and will focus on how He has been there for us every step of the way.  He has been excellent and praiseworthy.  The whole process has been oddly pure (all are references to Phil 4:8 as mentioned yesterday).  He has told me (to whatever degree) that it will be ok.  Focusing on that does give me/us peace.

What if we don’t?  What if we do focus on the bad?  What if we do give in to fear?  What indeed.  We will look at that in my next post, “Fear fear itself.”  Until then, seek peace and security…it can be found.  I’m praying for you and ready to cry with you.