1/22/15

Those of you who follow my blog or who know me personally, know the issues of our middle son, Alex.  He has a degenerative brain disorder called Cerebellar Atrophy.  It affects his vision, his balance, his motor skills…and causes him severe pain daily.   It does not affect his mind in anyway, thank God!  When I say that he is never without pain…it is not an exaggeration.

For years, ever since he was diagnosed when he was in the eighth grade, we have sought help from anywhere and everywhere.  The trouble is, there’s just not a lot of information, and fewer doctors who specialize in this.  We have looked the world over…literally.  We have gotten the most help from the University of Michigan and they have been able to give us information, but no help in dealing with the pain.

Alex is a regular patient of the Pain Management Center here and is on quite a few medications.  And, that is where we have been for about 10 years.  A few months ago, his doctor told him about a new treatment that could possible give him some relief.  He began looking into it and trying to get it available in Dothan.  However, we told him we would go wherever it was available.    The procedure is done every 4 days, so it really needs to be done as close to home as possible.  Finally, it was approved for him to get the equipment here in Dothan.   Then came a whole mess with insurance coverage, etc…since it is still considered by some to be experimental.  Another month or so and that was finally worked out.  We told them we would cover it out of pocket if insurance wouldn’t cooperate.  But, finally it was all set up.  And the device was implanted behind his ear last Thursday.

********The P-STIM is a miniaturized device designed to administer auriculo (ear) point stimulation treatment over several days.   Stimulation is performed by electrical pulses emitted through selectively positioned needles.  The advantage of using the ear is that it offers numerous points of stimulation within a small area.  It provides continuous point stimulation for several days and then is removed and replaced with another.********

I share this with you to ask for your prayers.  Regardless of the efficacy of the treatment, ultimately Alex’s well being is in the hands of our Heavenly Father.  I truly believe God wants Alex to have a better quality of life.  After all, He wants us all to have the joy that only He can give.  We know the outcome of this procedure is up to Him.  Our prayer is that it would give him some relief.  Our prayer is that Alex could be completely healed.  Our prayer is that he could live a normal life and get out into the world and not be home bound.  And, we know God is able.  God is able to do more than we could ever imagine.  Our prayer is that He shows us grace and mercy in Alex’s life.

But, if He should choose to let things remain as they are…we will still praise Him.  He is good…all the time.  And, He sees farther along than we ever could.  His will may be to teach us all a lesson in accepting what we cannot change and learning to look for the blessings of each day.

Pray with us, if you will, that God will give us the grace to accept His decisions…and the strength and perseverance to continue the fight.

1/26/15…..Edited to add:   Today Alex went in to have the second device implanted.  No news yet on if it is working,   Even the doctors and reps don’t know how long it will take to see results.  But, my God is big!

Yesterday, 1/14/15, I had a doctor’s appointment and Levi was going to stay with his Pa at work.  I had some time to kill before I could drop him off,  and I was already on that side of town, so I decided to go by and visit my Mom at the cemetery.  As I pulled in…

Levi…“What is this place?  I never been here before!”

Lulu….“I’m going to show you something.”

And, then I realized that Levi had probably never been to a cemetery before.  Oh, my!  How was I going to explain this to him?  I sent up a prayer…“Please, Lord, give me the right words.”  I did not want it to be a frightening thing for him…but just a fact of life.

We drove past the entrance and into the winding lane between the graves.

Levi….”Oh, I know what this place is!  It’s a flower garden!”

And, looking out over the neatly manicured lawn with flowers springing up everywhere…it did look like a flower garden!

Lulu…“There are sure lots of flowers here, aren’t there?”  And, I kept driving until I got close to Mom’s grave.  I parked and we got out.   He immediately took off running and exploring this new place.

Levi…“Look, Lulu!  There’s flowers and rocks in the ground!”  (He was referring to the headstones that are flat to the ground.)

Lulu…“Come with me, I want to show you something.”  And, I took him over to Mom’s grave.  I showed him the tree we had planted there, and the little redbirds that hang from the branches.  I showed him the bench we had placed there to sit and rest.

Lulu…“This is where My Mommy rests, but she lives in Heaven.”

Levi…“Where is Heaven?”

Lulu…“I’m not really sure, but I think it is on the other side of the sky.  But, I know for sure that Jesus lives there. “

Levi…“Does she have a house?”

Lulu…“The Bible says that she will have a house there.  And, the best part is, God is there, too!”

As he took all this in, he noticed the mausoleum close by.

Levi…“Is that God’s house?”

Lulu…“No.  That’s not His house.”

This was really a lot for a little boy to take in.  So, I just sat and let him ask what he needed to know.

Lulu…“Look, here is my Mommy’s name.”

Levi…” What is her name?”

Lulu…“Her name is Eloise…but your daddy called her Granny. Some people called her Ella, or Miss Ellie, or Annie.  I called Mama.”

Levi…“Is that her rock?”

Lulu…“Yes, that’s her rock.  See!  We put flowers right in here.  See how close it is to the redbird tree.”

Levi…Look! her name has an ‘L’ in it, too!

Lulu…Yes, and look!  it has an ‘E’ and an ‘I’ in it, too!

As he ran around, he picked out letters in other names on the ‘rocks’.

Levi…“Are they all your Granny’s name?”

Lulu…”No. Those are names of other people who are resting here, too.

Levi…“Did they go live with God, too?”

Lulu…“I don’t know, Levi.  But, if they loved Jesus in their heart, they sure did!”

I sat down on the bench and he climbed up beside me…swinging his little legs and looking around.  I knew his mind was full of questions.

Levi…“I like this flower garden.  I think it is a happy place.

Lulu…“Oh, it is a very happy place!  I like to come here.  But, we’ve got to go now…it’s very cold.”

Levi….“Is your Mommy cold, too?”

Lulu…“Oh, No!  She is in heaven…and she is singing and dancing and having a great time.  She doesn’t get tired and she doesn’t get sick….and she doesn’t get cold.  She’s happy all the time.”

Levi…“Can we come back next time?”

Lulu…“Of course we can!”

Wow!  What an amazing exchange!  I think God gave him a little understanding and me words to say.

1/15/15

This morning, before breakfast, Levi said the blessing.

Levi…“God, please look after Lulu’s Granny in heaven.  I like her flower garden.  I will come see her one day.  I like the eggs and the bacon.  I like my school. I like Jesus.  Amen.”

Friends, these are the moments that you take and tuck into your heart of hearts.  These are the moments that remind you that God cares about the hearts of little boys and big Lulus.  These are the moments that remind us that He watches us everyday, in everything we do.  And, He plans special moments for us to savor.

It has always saddened me a little that Mom never got to know John Thomas and Levi, and now Jackson.  She loved her grandchildren so much and her great grands would have thrilled her!  Joy takes John Thomas to visit quite often and now Levi has visited her resting place.  I don’t know if she sees them or knows of them, but I sure like to think that she enjoys it when they visit her.

This little visit to The Flower Garden was a spur of the moment idea…not planned or even thought about until it happened.  Well...I didn’t plan it.  But, perhaps God had other ideas!

It is important that in matters of theology we don’t give more information than a child is old enough to comprehend.  I gave Levi as much information as I thought would make sense to him and I answered every question he asked, but I did not try to explain to him that her body is under the ground, or that she is dead.   That can be quite confusing to a young child.  and that understanding will come to him at a later time.  So, I followed his lead.  What he needed to now…he asked.  What he asked…I answered.  The main thing this little visit did for Levi was show him that a cemetery is not a scary place.  This sets a foundation for the times he will encounter death in years to come.  To him, at this time, a cemetery is a place where there are lots of flowers…it’s a place where we talk about people we don’t see anymore…and, he had a happy time there. 

”  We will tell the next generation the praiseworthy deeds of the

Lord, His power, and the wonders He has done…

so the next generation will know them,

even the children yet to be born,

and they in turn will tell their children.”  

Psalm 78:4-6