Anchor

Andrea posted briefly about the rash of seizures that Reuben had starting last Tuesday and into Wednesday.  Now that we are a few days removed from the situation, I wanted to take some time to share some thoughts that I have been working through and have been sharing with Andrea.

Last Wednesday was the worst seizure I have seen Reuben have since the first seizure he had in his crib at 16 months old when he was blue and we called the ambulance because he was not breathing and at that time we did not yet know that he had epilepsy or Ring 20.  That was over three years ago and since then I have become more accustomed to Reuben having seizures and Andrea and I take them in stride and comfort Reuben as he comes out of them, but the panic that was present that first time when he wasn't breathing and was turning blue or even the panic that would hit every time he had a seizure for the first few months has subsided.

Last Tuesday at therapy, Reuben had a tonic/clonic (grand mal) seizure while working with his therapist and it shook his therapist up a bit to see that.  Then later in the afternoon on Tuesday we were having an IEP meeitng with Reuben's teacher and at the very end of that meeting, Reuben was standing by one of the tables when he just crumpled over into the chair as another tonic clonic seizure gripped him.  Once again, his teacher who has not seen him have seizures before seemed pretty bothered by what she saw.  After those seizures on Tuesday, they starting escalating over night and by Wednesday morning he was having a seizure nearly every 45 minutes and when he was not having a seizure he was totally wiped out and "sleeping".  In the early afternoon, he "woke" and had a seizure hit...so like normal, we came over by him and just rubbed his back and talked to him while we waited for it to stop...but it didn't stop as quickly as they usually do.  In fact he was holding his breath for long enough (with his heart pounding at the same time) that his lips and cheeks were again turning blue.  All of my comfort with seizures went out the window as the reality set in that it is completely possible that Reuben might not come out of the seizure and he may seize and hold his breath until he dies from lack of oxygen.

What do you do?  What do you do?

Do you call the ambulance?  Why?  As I have reflected on this the past several days, I have come to the conclusion that I probably would not call the ambulance.  If the seizure is going to end, it will only do so on its own and there is nothing that I can do or the paramedic can do to make it stop.  If the seizure doesn't stop, there is nothing that I or the paramedics can do to help him.  If all his muscles are seized, it doesn't matter how much oxygen they give to him with a mask...it isn't going to go anywhere.

Andrea and I have had some pretty weighty conversations lately.  I think intuitively we all know that any of us can die at any time, but with Reuben, it can be so much more in your face.

So back to the question.  What do you do?

The song "Anchor" by Josh Garrels has been hitting me more this week.  Take a listen.  (And lyrics are here.) That combined with some things that have come out of the Sunday school class I teach and my own bible reading have been what I have been doing or holding on to.

In the fifth chapter of the book of Joshua we see this encounter.

When Joshua was by Jericho, he lifted up his eyes and looked, and behold, a man was standing before him with his drawn sword in his hand. And Joshua went to him and said to him, “Are you for us, or for our adversaries?” And he said, “No; but I am the commander of the army of the Lord. Now I have come.” And Joshua fell on his face to the earth and worshiped and said to him, “What does my lord say to his servant?”  And the commander of the Lord's army said to Joshua, “Take off your sandals from your feet, for the place where you are standing is holy.” And Joshua did so.

What gets me here is that the question Joshua answers is so human centered.  Are you for US or against US.  And the response is so completely God centered.  NO!  He is not for us or against us, he is for the Lord and the question is whether or not we are for or against Him.  Later in the book of Joshua, we see where God states that he is "fighting for Israel", but it is not an unconditional fighting for Israel.  It only applies when Israel is obedient to God.  When they disobey he does not fight for them.

Then a couple of weeks ago, in my own bible ready in Deuteronomy, I found this passage where God is telling Israel what will happen to them if they obey or disobey when they enter the promised land.

Whereas you were as numerous as the stars of heaven, you shall be left few in number, because you did not obey the voice of the Lord your God. And as the Lord took delight in doing you good and multiplying you, so the Lord will take delight in bringing ruin upon you and destroying you. And you shall be plucked off the land that you are entering to take possession of it.
  
Again, I notice how God centered this passage is.  As humans, we would like to think that God takes pleasure in blessing us and that he dislikes cursing us.  Yet, what this passage appears to be saying is that it isn't really about us.  God takes the SAME pleasure in blessing (doing good and multiplying) as he does in cursing (bringing ruin upon you and destroying you) because in either case, he is taking pleasure in doing what is right and just in response to our actions.

So...What do you do.  The only answer that really makes any sense is that I need to pour myself into knowing God so that I can obey him and can in turn experience His blessings.  The song "Anchor" makes reference to the song "It is well with my Soul".  This is a song that I love to play on the piano and sing.  For those of you that don't know the words to that hymn, here they are:

1. When peace, like a river, attendeth my way,
   When sorrows like sea billows roll;
   Whatever my lot, Thou has taught me to say,
   It is well, it is well, with my soul.
   • Refrain:
     It is well, with my soul,
     It is well, it is well, with my soul.
2. Though Satan should buffet, though trials should come,
   Let this blest assurance control,
   That Christ has regarded my helpless estate,
   And hath shed His own blood for my soul.
3. My sin, oh, the bliss of this glorious thought!
   My sin, not in part but the whole,
   Is nailed to the cross, and I bear it no more,
   Praise the Lord, praise the Lord, O my soul!
4. For me, be it Christ, be it Christ hence to live:
   If Jordan above me shall roll,
   No pang shall be mine, for in death as in life
   Thou wilt whisper Thy peace to my soul.
5. But, Lord, ’tis for Thee, for Thy coming we wait,
   The sky, not the grave, is our goal;
   Oh, trump of the angel! Oh, voice of the Lord!
   Blessed hope, blessed rest of my soul!
6. And Lord, haste the day when my faith shall be sight,
   The clouds be rolled back as a scroll;
   The trump shall resound, and the Lord shall descend,
   Even so, it is well with my soul.

There is a conscious choice to chose to say it is well with my soul.  In a similar manner, one of the two songs that I sing to Reuben every night when I put him to bed is "This is the Day".  "This is the day that the Lord has made, I will rejoice and be glad in it."  Some days that song rolls off the tongue very easily as I sing it at bed time.  Other days, like the day my Dad died or after Reuben has had 16 seizures in a 24 hour period, those words come out a little more slowly and with tears as through the grace of faith, God enables me to believe that those are the things that God had for that day and in knowing that, I can say " I will be glad in it" or "It is well with my soul".

In case you didn't listen to the song "Anchor" or read the lyrics, I will leave you with this snippit of lyrics from the song.

And the blood that was spilled protects me
It's the same blood that cleansed me
My only defense against my nemesis
Now I can rest knowing that nothing can come against
Me unless the Father gives consent
Evil intentions will not disturb God's purposes or interfere so
Who shall I fear if my Anchor is secure?
Learning to consider it pure joy when I'm facing tribulations
Praising God instead of complaining or getting overtaken with bitterness
Looking at the pages of the book of James and seeing
The ways that God works through the trials to make us more
Mature in our faith. It reminds me how desperate I am in
This desert land, thirsty for your mercy and plan while you
Give me the strength to stand. You're my greatest pleasure
Yeah, no matter the weather I face, Lord you never forsake
My fragile life is safe under your sovereign grace