If It is Your Time to Move, Just do it!

Good Morning,

I was meditating this morning and as I looked back I remember about this time in 2012 I was ready to return home to Memphis. We were homeless and I couldn't find a job in Orange County, California. I recall my anger with God because the move proved more difficult than I thought it would be. But I was determined to bring Robyn here to attend a brain-injury program that would assist with her cognitive rehabilitation.

I remember my kids saying, no, mom let's just wait it out. My younger son asked me where was the faith I had taught him. Yeah, that was my eye opener, if my teenage son could believe that the God I taught him about would deliver us, why couldn't I?

Change is difficult, but sometimes necessary. Many times we turn back because the process appears overwhelming. We will run back into captivity because we have conditioned ourselves to believe it was comfortable, instead of running into the arms of God and trusting he will deliver us to a safe place. Isn't he an awesome God!

So I shared that because many times when it is time to move, because of fear and what may happen, we stay in places longer than we should. If it is your time to move, do it, trusting that whatever happens God will see you through it and deliver you to where he wants you to be.

Let's Change the WORLD Movement and Radio Show

Hello everyone, I will be a guest this weekend on Dale Davis' Let's Change the WORLD Movement and Radio Show  (segment on Books and Music that Change the World).  If you are able, please tune in on Sunday, September 14, at 7 p.m. est., and 4 p.m. pst, and 6 p.m. cst.  Hope to hear from some of you who have read the book, "God's Miracle Among Corruption in Idaho."

If you want to know more about me and the book, read my latest blogpost: The Challenges of Rehabilitating a Child Declared Brain-Dead (http://un-heard-voices.blogspot.com/2014/09/the-challenges-of-rehabilitating-child.html) or visit my website (www.veverlymyers.com).

Hope to hear from you on Sunday evening. :)

The Challenges of Rehabilitating a Child Declared Brain-Dead

In the days following the medical team’s declaration that my daughter, Robyn, was brain-dead, I refused to leave her bedside because I wanted to make sure she received the care of someone expected to live.  I did not think the medical team at Primary Children’s Hospital (PCH) would harm her, but at that point, I did believe they would treat her like someone who was dying.  I have seen many cases of people declared brain-dead since Robyn, and I often wonder about these cases and the care given after the declaration.

                One of the things I was grateful for in Robyn’s case was that the medical team at PCH, although they did not believe she would live, never threatened to disconnect her from life support.  I appreciated the neurosurgeon asking me, “Ms. Edwards what do you want me to do?”  I asked for more time and he gave her another week.  It was in that week that she made a small movement and it was evident she was not brain-dead.  Although they informed me not to place much hope into that because of the mass amount of damage to her brain from the stroke, I took that as a sign that God was indeed bringing her back.

                Robyn was never expected to get out of bed, as a matter of fact, when she opened her eyes for the first time, I was told not to expect any more than that.  But I told them, I expected much more.  I anticipated she would come out of the coma because I was trusting God for that.  I was often told that she would have another stroke because of her condition, but I refused to believe that too. When she finally regained consciousness, the medical team was astounded, and there were many evaluations to establish her baseline, where she was when she regained consciousness compared to where she was before the stroke.

                Robyn’s brain had endured a mass about of trauma from the stroke.  One of the first noticeable signs was when she starting swearing.  With a lot of redirection from the nurses, therapists, family, her dad, and me, she regained those filtering skills rather quickly.

The medical team also wanted to place her on medications, which I was against.  I did not want anything to alter her mental state or control her reactions.  I believed this was something she would need to learn to do again on her own.  After allowing them to try a couple of drugs, and seeing the affects, I refused to allow them to give her anything that affected her mentally.  I allowed the aspirin and the drug for the spasticity in her muscles, but that was it.  Oh, and there was the antibiotics for the infections she contracted while there.  We were in the hospital for five months. 

After Robyn awakened from the coma, I was told that she would need to be admitted to a long term care facility.  Yes, I rebuked that in the name of Jesus too.  I told the medical team that Robyn was going home.  If Robyn had to go to a facility, that meant I had to go, and we had been away from home too long.  I was told by the medical team that she would be too much to care for on my own.  But there was a case manager in the meeting that stated if I wanted to take her home, she would help me with the transition.  So I had to be trained in preparation to return home.

The most challenging situations were the ones where I had to give in to something that I trusted God to correct.  For instance, when I was told she would need a tracheotomy and feeding tube for life, I refused to accept that.  But because they believed this to be fact, I had to be trained in the hospital in order to prepare to take her home.  Some days were truly difficult.  I often told God during the training, “I don’t know why I am going through this but I am trusting you that it is not for Robyn.”

When Robyn first began therapy in the hospital, I remember one of the first goals was something like sitting up on the side of the bed, without assistance, for five seconds.  That sounds like a small amount of time, but for someone who lost that ability it was a monumental moment when she was able to achieve it.  With the assistance of the therapists at PCH and colonel the therapy dog, Robyn made great strides. 

By this time Robyn was breathing on her own and it was obvious that the tracheotomy could be removed, but she was still dependent on the feeding tube.  When the speech therapist informed Robyn of what she needed to do to eat again, Robyn and I went to work on strengthening her muscles in her face and her mouth.  Within in a few weeks, the speech therapist ordered a swallow study.  A few weeks later Robyn was eating again.  I often tell Robyn that those scars are battle scars and a reminder of where God brought her from.

Robyn spent several months in intense therapy at PCH.  I was grateful that she was strong enough to endure their program.  I am not advertising for Primary Children’s Hospital, but the rehabilitation team there has to be one of the best in the nation.  Robyn went from a very active 13-year-old to not being able to move or hold her head up.  The team of therapist at PCH, were great motivators and they never set limits for her, and I believe they too believe in miracles.  They played a major role in her successes.

When I left PCH, Robyn was feeding herself with a fork.  She had made major strides, but had many more to achieve.  The nurses and therapists trained me on everything from giving her baths to transferring her in and out of her wheelchair.  I must tell you that when I left the hospital, I informed God that I was not anticipating Robyn going home in a wheelchair.  I also informed him that I had no idea how I was going to care for Robyn and her brothers, but I was trusting he would get me through it.

While the challenges in the hospital were great, the transition home and all that it entailed was overwhelming.  When I had to fill out social security paperwork for Robyn, I thought I was gonna suffocate.  This was not supposed to happen to her at 13-years-old.  The day I had to return to the school to get information for her return, I almost had a meltdown in the hallway.  When I saw the kids in the hallway and postings of activities on the walls, a flood of memories came to my mind.  I muted the scream inside of me.  I headed for the nearest exit, ran to the car, and I cried. 

Robyn’s transition home also affected her brothers.  My mom stayed with them the five months Robyn and I were in the hospital and another three months after we returned home.  She also returned several times to take the pressure off of me.  With Robyn’s schedule of school, therapy and needing my assistance as a scribe in the evenings, there was little time for much else.  So this affected the boys, mostly my youngest son.  As a mother I tried to balance the effects of Robyn’s condition on everyone, but there was no way to really do that.  When my oldest son left for college, my youngest son felt the affect more than anyone.

Robyn was readmitted to PCH about a year after the discharge from the five month stay.  When I was told by a friend that water therapy was really good for mobility issues, I changed Robyn’s physical therapist to one that offered water therapy.  It was the water therapy that helped her to take steps again with her left leg.  After several months in water therapy, I asked her rehabilitation doctor at PCH if she could help get Robyn stable enough to walk.  She had Robyn readmitted for a month of intense therapy at PCH, and Robyn left there taking steps on her own again.

The initial reentry to school went well.  It was when she transitioned to high school that I found myself up against a new set of challenges.  To make it short, I will just say that most schools are not prepared to educate a child with a traumatic brain injury.  So there is a tendency to box them in, but I expected and refused to accept anything less than an education for Robyn.

After high school, Robyn enrolled in a brain injury program at a college in Southern California.  This too proved challenging, but she made it through.  Robyn enrolled in an academic program at Irvine Valley College in August of this year (2014).  I imagine this too will be a challenge, but she has overcome so many I expect that she will conquer it too. 

When I read about other families in our situation, I can only say what a neurologist at Primary Children’s Hospital said to me before we moved away, “I can never tell another parent who has a child with a brain injury as severe as Robyn’s that their child will live, but I can tell them of one who did.”

Checkout my website for information about my book, “God’s Miracle Among Corruption in Idaho” and a PowerPoint presentation of Robyn’s journey (www.veverlymyers.com).  Robyn’s massive stroke was caused by a preventable medical error due to the negligence of a doctor in Idaho Falls, Idaho.

Poem: The Parade of Injustice

Poem: Parade of Injustice

By: Veverly Edwards
www.veverlymyers.com

I wonder now, as I am pushed and shoved forward

                Did I once stand by the side with averted eyes?

                Refusing to look up, can’t be a witness

                Or maybe afraid that humanity may strike me

               

                As I looked on the crowd, searching for a familiar face

                I thought I saw one, but the jerk of a head

                Roll of eyes, and a twisted face

                They didn’t want to be identified

                And so onward I moved, and out of sheer exhaustion

                I shouted “Don’t you see what they’ve done?”

                Then suddenly a lady in the parade scorned me

                “What are you doing? They don’t care”

                “But if they heard me, if they saw me,” I said

                “Do you think they are blind?” she replied

                As I looked around, I saw the signs

                Innocent convicted, Guilty set free

                Oh, I see a Christian, I see a Christian

                How excited I was, and then to my surprise

                Their glare vexed my spirit, I started to despair

                But the spirit reminded me, Of My Lord, My God

               

                As I looked ahead, the line was thinning

                For a moment, I thought we were progressing

                As I approached the turn, I saw onlookers waving

                Give it up! Let it go! Move on!

                People were leaving, they were worn and tired

                And I said to the Lord, “Please can I go?”

                But instead he made me a promise

” I will never forsake you”

So in the parade I stayed.