The Big G - He Always Sees You

El Roi - The God Who Sees Me

I've often heard it said that special needs moms begin to feel invisible.  In many cases, travel becomes more difficult so, as we become more secluded, it can truly feel like we are invisible.  That is something I've regularly prayed about.  Lately though, instead of pouring my heart out to say how invisible I feel, it has been an overwhelming sense of gratitude to the One who sees me, El Roi - the God who sees me.

It started in May when I attended a Women of Joy Conference.  During those wonderful services, God began to bring people across my path to show me that He had seen me.  As I sat during one of the services, the speaker taught on the woman with the issue of blood and how many labels she must have had.  She would have been rejected by everyone - her family, friends, husband.  Now that is isolated.  But then she touched the hem of Jesus' garment and heard Him call her daughter.

Mark 5:34

He said to her, "Daughter, your faith has healed you.  Go in peace and be freed from your suffering."

Daughter!  The only one that had the authority to name her called her daughter!  As the speaker shared those words, I thought, "Ow, no. Ow, no, no, no."  Sigh - the ugly cry.  The speaker asked us to hold hands across the convention center and pray for those to each side.  I don't know who the person was that was beside me but before she left she stopped to speak briefly and then I saw her again when we were across from each other at a book kiosk.  She smiled a smile that told me she was praying for me.  I knew instantly that God was saying, "I am the God who sees you."

Later that day, we went to the grocery store.  A sweet little grandpa was walking past as I was getting Ryan's chair out and said, "Good job Momma!  Thank you for what you are doing."  He was quite happy about heading home with his frozen pizza to watch sports in his favorite chair.  Again, "I am the God who sees you."

As we were coming out of the grocery store, Wes had loaded up the groceries and I had loaded Ryan.  I was walking around to put the wheelchair in and another sweet little grandpa came walking up to me.  He had that, "I'm about to hug you" look on his face and so he did.  He said, "Thank you for being such a good caregiver!  It is just wonderful to see. Thank you!"  Again, "I am the God who sees you."

It has been about a month since I met the two grandpas and I've come to realize that the God who sees me must realize what a lonely, awkward time it can be to go to the grocery store.  He most often sends the reminders of how He sees me during the trips to the store.  This time, as I stood in line, a retired New York police officer came up to speak to Ryan and tell him how sharp his shirt was.  He then looked at me and said, "You are doing a great thing and the Big G always sees you and what you are doing, always.  He will reward you."  He even looked back as he walked away, smiled and said it again, "The Big G - He sees you!" 

Genesis 16:13

She (Hagar) gave this name to the Lord who spoke to her: "You are the God who sees me," for she said, "I have now seen the One who sees me."

For all of my fellow Moms, ask God to show you that He sees you.  He won't disappoint.  Give it a try and let me know.

What can you do to help a special needs parent feel less lonely? When you see them find something to compliment their child on.  It really doesn't matter what it is - their shirt, their smile, their hair, or maybe the cool wheels that light up on the wheelchair - I miss those lights.  They were great conversation starters with children as they pointed to the wheels.  You may be the voice that sends them home with a better awareness of the God who sees them.

No is Not the Final Answer to Medically Necessary Treatments

Special needs parents take on more hats than we ever imagined, in areas that we aren't always naturally gifted in.  I'm so amazed at the strength and creativity that I have witnessed by so many of you amazing Moms and Dads.  I suppose the gift that God gave me for this journey is that of pleading a case and favor when pleading it. 

My first step is to always, always pray for favor over Ryan and my requests for him.  God can go to work on people before I ever meet them and before they even know Ryan's name.

I've found that the best strategy is to be diplomatic in pleading Ryan's case, not to mention far less stressful.  Many of the decision makers within Health and Human Services really do care about people, especially children.   

In our case, I was seeking services that were outside the norm, Hyperbaric Oxygen Treatments for a child with a traumatic brain injury.  I really needed to help them by providing documentation to support any decision to go outside of what was considered acceptable among their medical peers. 

Initially, they allowed us to do a one month trial.  Unfortunately, the HBOT Medicaid Provider that was selected for the trial was not a fan of using his tax dollars to cover what he considered to be experimental.  He often lectured me on being careful with other people's money. In the end, he disagreed with coverage and DHHS didn't have the documentation they needed to decide in our favor, so they had no choice but to deny coverage.  I requested the denial in writing along with the appeals procedures.  Then I began building my case.  

Federal law requires the Department of Health and Human Services (Medicaid) to cover treatments that are medically necessary for children under the age of 21.  In our case, there is a tremendous amount of evidence to prove that Hyperbaric Oxygen Treatments (HBOT) are helpful for individuals with brain injuries; however, there are also many medical professionals who are against it.  We needed to seek out credible witnesses and cases.

We found cases where parents in other states, like North Carolina and Florida, had won an appeal for coverage.  We also found clinical trials in Japan and Israel that documented improvements in patients with seizures (Japan) and patients with traumatic brain injuries (Israel).

We also documented Ryan's personal response to HBOT.  Though he had improvements in many areas, we chose to focus on seizure control since that is the hardest to dispute.  We maintained a log that detailed improvements and seizure control during HBOT sessions, and the lack of seizure control in the absence of treatments.   Additionally, during one period there was an alarming progression of seizures.  At its worst, he was either sleeping or having a seizure. He missed more than 45 days of school - without HBOT.

We asked medical professionals that work with Ryan to write letters detailing why they felt HBOT was "medically necessary" for him.  We obtained letters from his neurologist, physical therapist, speech therapist, and occupational therapist.  We also made copies of Ryan's IEP that noted improved attendance and performance following dives.

We made copies of all of our documentation with an index to make it easier for the hearing officer to follow.  We also provided a video of Ryan having a seizure and asked that it be watched during the hearing.  In the end, the hearing officer found our evidence to be credible and found in our favor.

Unfortunately, our request had been for one more month of HBOT, for further review, rather than for ongoing treatments.  Therefore, winning the hearing meant that we really just won one month of treatments.  After that month of treatments, the Department of Health and Humans Services approved six more months HBOT.  They also required that we (Mom and the neurologist) provide monthly logs and progress reports by the 5th of each month.  At the end of six months, we must provide an additional EEG and final report, which they will review to determine their opinion as to medical necessity.  If they say no, the appeals process will start again.

The follow-up EEG is scheduled for December 2014 and due to DHHS in early January 2015.

Praying for yes!  God bless!

You Have to Fortify!!!

Game nights amongst the Stewart women and their men are quite entertaining.  The men seem to be under the misguided impression that it is all about strategically and ethically dominating the score board; the ladies, not so much.  The ladies’ objective is always about cheating with just enough suspicion to antagonize the men while avoiding any concrete evidence to satisfy their accusations.

We don’t even care if we win as long as someone on “Team Woman” wins and we have the opportunity to watch male forehead veins pop out.  I wish at this point I could say that I’m not proud of our behavior but, in fact, I am quite proud of our escapades and have giggled with pride while writing this blog.

Our silly men think that not all games are meant to be “team games.”  My favorite reaction was from my husband when a fellow man asked what we ladies were giggling about.  Wes said, “Who knows.  They probably cheated again.  You can’t play a serious game with them.”   I speak on behalf of all the Stewart women, “We deem ‘Serious Game’ to be an oxymoron!” 

Our game play is most disturbing to my husband when we play a game of Risk, an unmercifully long game.  We don’t even have to cheat.  We just move from man to man ganging up on him until he or we are out of the game.  Spoken like a former Army Sergeant, my husband will say with a vein popping sigh, “You can’t just attack, attack, attack!  You have to fortify! You have to FORTIFY!” 

He is right.  As we attack, we inevitably destroy our army in the process.  Remember though, our intent was to promote success among Team Woman rather than to be the individual winner.  We don’t really care if we destroy our own strength in the process.

All of those memories were stirred, along with a life lesson, when I heard a speaker say, “There is something inside of women that fortifies us in the face of frustration, in the face of failure, in the face of fear, in the face of disappointments.  All of a sudden we bounce back again.”

Isaiah 40:31

“But those who wait upon the Lord shall renew their strength; they shall mount up with wings like eagles, they shall run and not be weary, they shall walk and not faint.”

Those fun memories reminded me that in the journey of special needs parenting, I have to step back and make sure I’m only fighting the battles that God has called me to fight.  Alone I’m outgunned by Satan, by the insurance company, by the school, by fatigue, and by far too many demands to humanly meet.  I have to take time to sit in His presence and fortify my strength, hope and faith.  As I do, He fortifies me to the point of being able to do all things through Christ who strengthens me!!

In the words of Sergeant Howell, “You can’t just attack, attack, attack.  You have to fortify!  You have to FORTIFY!!!

"Out of My Mind"

Slightly outside the realm of my typical posts but I wanted to pass along an excellent book for those who love, know, work with, or simply want to better understand a non-verbal child.  The book is "Out of My Mind" by Sharon Draper.  It is a fictional story about a non-verbal child who has severe cerebral palsy.  Though it is a fictional book there are many children in the same situation that are not fictional.  They know so much more than they can communicate.  It truly has changed some of the ways I interact with our little guy.  It may be one of the best awareness tools that I've ever seen.  Thank you Sharon Draper!!

Let's Do This

Very short and to the point this week.  As I continue to work my way through "A Praying Life," I'm finding that it truly is transforming my life into one that is routinely interrupted by prayer.  The more I pray about the overwhelming things of life, and the special needs life is full of them, the more my view of God's role has changed. 

Rather than being one of, "Lord please give ME the strength to do this." it has become one of, "Ok Father, let's do this."  HE never intended me to gain strength from Him in order to go off into my calling alone.  It has always been about taking HIS hand and doing things with HIM. All week I've had this picture of heading off into the world holding Dad's hand. Whew, what a relief this truth has been for me this week.

John 15:5

I am the vine; you are the branches.  If a man remains in me and I in him, he will bear much fruit; apart from me you can do nothing.

Twix? No Thanks - I'm Praying with Honesty

Do you remember the candy bar commercial where the child is embarrassing the parents by saying inappropriate things?  It was something like, “Daddy, his nose isn’t brown.” Or to the bride “My Mommy said she can’t believe you are wearing white.” The parent quickly shoves a candy bar in their mouth, a Twix bar I think.

That commercial came to mind last night as I was reading what is quickly becoming one of my favorite Bible studies, “A Praying Life” by Paul E. Miller. It truly is changing my prayer life. As I was making notes for this devotional, I could feel God nudging me to make my prayer life like the beginning stages of writing a devotional. The beginning stages basically consist of putting every thought or idea on paper. I don’t worry about the grammar, the flow, or editing out the bad ideas. Everything goes on the paper and then I sort it out.

So many times I’ve become frustrated while praying because the distractions and concerns of the world crowd in on my thoughts. If I had been sitting there talking with my Papaw I would have simply voiced them to see what he thought. Yet for some reason when they pop into my mind during prayer I waste time wrestling with pushing them away.

In his book, Paul E. Miller explains our problem with praying as, “What’s the problem? We’re trying to be spiritual, to get it right. We know we don’t need to clean up our act in order to become a Christian, but when it comes to praying, we forget that. We, like adults, try to fix ourselves up. In contrast, Jesus wants us to come to Him like little children, just as we are.”

I believe I will challenge myself, and you, to take the Twix bar out of His little girl’s (boy’s) mouth and speak freely. Of course, I do believe in praying the Word over our lives. But much like the sorting out phase of writing, those words come after we’ve gotten it all out on the table.

Ephesians 6:18 NIV

And pray in the Spirit on all occasions with all kinds of prayers and requests. With this in mind, be alert and always keep on praying for all the Lord’s people.

Hmmm, I wonder if this can transform my prayer life from one that is always interrupted by life to a life that is always interrupted by prayer.

Casting Down Imaginations

By the end of our hyperbaric treatments, we may be calling Ryan “Stretch.” The pictures just don’t do his length justice. This was the stretching time just after Tuesday's morning dive, dive 22. I can’t believe how tall he is. Even just sitting in his wheelchair he seems so much taller and stronger. Ryan isn’t the only one being stretched in this process.

The time in the chamber is stretching me as well. I’m feeling more and more accomplished at 2 Corinthians 10: 4 – 5 with every passing treatment in the small chamber.

2 Corinthians 10: 4 - 5

“(For the weapons of our warfare are not carnal, but mighty through God to the pulling down of strongholds; casting down imaginations, and every high thing that exalts itself against the knowledge of God, and bringing into captivity every thought to the obedience of Christ;”

We “chamber parents” have talked about how we could let our minds take us to a state of panic if we didn’t stop them, if we don’t quickly take those anxious thoughts into captivity. While in the confined little chamber it is easy to start thinking about all of the what-ifs. What if the power goes out? What if the technicians left or something happened to them? ......WE'RE TRAPPED!!!!!!

When I briefly entertained those thoughts, I could almost feel my heart rate increase and my chest tighten, leading to a sudden difficulty in breathing. Now that is some imagination, creating difficulty in breathing while in a chamber packed with 100% oxygen.

To ward off those thoughts, I quickly became a fan of Nick Jr., the channel Ryan seems to like best while in the chamber. Miss Spider in Sunny Patch is my favorite. Does anyone else think that maybe the character of Miss Spider’s son, Bounce, might be based on Ryan?

Ok, praying that HBOT will assist with my self-diagnosed ADD.  Back to my "casting down imaginations" point, I pray that I will be able to keep those casting down muscles stretched out and remember what I have learned in the chamber:

1) When my heart begins to race from the what-ifs of life, I need to redirect my attention, not to Sunny Patch, but to God’s word. The most powerful word seems to be whatever He has spoken to me recently. He speaks and what He speaks is relevant to where I am today or where I’m headed so I need to write it down and reflect on it.

2) I’ve realized that when it gets hot in the chamber and Ryan is sprawled across me it triggers anxiety. That has me thinking about the anxiety triggers in life that I need to avoid – fatigue and failing to have quiet time with God are at the top of the list.

.....speaking of fatigue, I better do some avoiding of that anxiety trigger - Good night!  ; )