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Part 5: *Whatever* May Come My Way

Hope…..my theme word since May 2015.  Hope showed back up on July 8, 2018….B and I were late for church again (let us have a SHOCKER moment), luckily, he left the kids and me off at the door.  That allowed us to find a seat (in front of our favorite humans, Mr. Cliff and Ms. Jan.  While the kids sat down, I scurried Hunter off to his class.  For the purpose of playing with his “brother” and then I could sit in peace for a few minutes.

Well, God is the God of peace, but He also has an agenda.  As sweet Grace was doing worship, she started a song that I had never heard of “Come What May.”  Gracious.

Come What May:

In death and life, I follow You
In every season, this be true
‘Cause I chose this path and I made this vow
And I will never turn around

Nothing can hold me back from Your love
I’m following You, Jesus
Whatever may come my way

To live is Christ, to die is gain
I give it all for love’s true name
It brands my heart, and now I will rise
To bear the name of Jesus Christ

Nothing can hold me back from Your love
I’m following You, Jesus
Whatever may come my way

Come what may, I will obey
‘Cause I find my joy in bringing You praise

I will obey You, God, whatever man may say 
I stand on promises I know my God has made 
With no regrets in me, my lips will praise Your name 
And though the earth gives way, I will not be afraid 

‘Cause You are the Lord of Lords, You open every door 
You stand in victory, and now my heart is Yours 
I will trust in You, God, and I will not be moved 
When persecution comes, I choose to stand with You

I bolded what stopped me in my tracks.  Again, my head was down, I was singing in my spirit and then when those, unexpected verses (still, I did not know this song) came on…..my body started to react, and my hands were flying up in the air worshipping Jesus.  I almost, just almost, stood on the chair to get closer to God (kind of like southern women who make their hairs real big….the bigger the hair, the closer to God status).

In A Moment

In a moment, I looked over and saw Richie (our pastor) standing by Bart.  He asked if we would be willing to share our testimony about what has been going on.  We said yes, but my mind (flesh) was screaming…I have nothing to say.  I mean nothing is in my head. What on earth?

Things have been tough around my neck of the woods.  Every single child is struggling with something, as are Bart and I.  Our marriage is strained, our minds are twisted, we are feeling very alone, unloved, and with all that is going on……..we still have the massive needs of Hunter.

When this song was over, Richie said that he felt like the Lord was leading him to ask us to speak because man is telling us so much…yet we are trying so hard to seek His face.  There are days, when I seek His face, with my eyes shut.  You know, when children play hide and seek…if their little eyes are closed, they can’t see you and you can’t see me, but we can turn our heads to a voice….that’s kind of like the life we all had been living.

The Baseball Cap…Let Hope Arise

Hope

Finally, we have answers to our medical questions, in regards to Hunter.  Yet, his doctor is still trying to get us to nail jello to a wall.  First, he has strep, then he has Cerebellitis, then there is the diagnosis of OMS (Opsoclonus Myoclonus Syndrome), next is possibly SCA (Spinocerebellar Ataxia). In the end, he does have 1 copy of the MRE11A mutation on chromosome 11q21, which correlates with ATLD1.  Yet that was still an incorrect diagnosis.  We are back to Opsoclonus Myoclonus Syndrome.  Our fifth (and third) final diagnosis. Blah blah blah blah.  I am SO sick of listening to the voice of man dictating every aspect of Hunter’s life.  Sick.  Of.  It.

As we got up there, we made it through the testimony….only to be blindsided by a baseball cap……

 

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