Hope and Wheelchairs

May the God of hope fill you with all joy and peace as you trust in him, so that you may overflow with hope by the power of the Holy Spirit. 

Romans 15:13

It has been amazing to see how God has used our story both while I was at the NIH and after.  He was truly doing some amazing things, and I was (and still am) a living breathing miracle.  

A few days after Jodi’s surprise pick-me-ups, I would get one of my own.  While still in the ICU, we received the results of my morning bloodwork.  My white blood cell counts were continuing to rise with the new stem cells taking their place in my bone marrow.  For the first time in my life, my blood cells, at least on paper, were normal. This meant that I was no longer a patient with Chronic Granulomatous Disease.  The condition that had plagued my entire life, and the cause of the infection still threatening it was now a thing of the past.  It was a very surreal moment, one that, if I am honest, I still haven’t fully wrapped my head around, even 2 ½ years later.  I can remember sitting on a bench outside of building 10 at the NIH and calling Jodi to tell her that they had found a way to cure my disease. Now, nearly two decades later this truth had become a reality in my life. It was truly a work of God.

And the miracle was not lost on the medical professionals that were tending to me every day.  MRIs showed that the infection was at the very least stable if not improving.  CSF was beginning to flow again up and down my spine, and doctors nurses and therapists seemed to be falling over themselves to just observe what God was doing.  My body was fighting the infection on its own! 

Every day I met with physical, occupational, and acupuncture therapists, and even though they were all very encouraged with my progress, in my mind it was too little and too slow.  Each morning they would strap me into a a Hoyer sling and lift to place me into a very crudely pieced together wheelchair.  

My therapists had searched all over the hospital to find a high backed wheelchair that could give me the support that I needed to be able to sit upright.  They then added pillows and padding all around me to provide the comfort I needed to sit for hours at a time.  Once in the chair I would work on small movements of my head, turning from one side to the other, and rotating my wrist on my right hand.  My acupuncture therapist would come in and work her witchcraft by sticking needles in my head and causing muscles in my thigh to contract.  

Together all of these therapists were working hard to get me moving again, but as I spent the lion share of my time sitting in a bed unable to feed myself or scratch my own nose, I found myself plunging further and further into depression.  I can only imagine how difficult and taxing it must have been for Jodi to carry me through this time. 

As Jodi prepared to trade off with my mother again, my team began talking about adjusting my trach and the possibility of moving out of the ICU and back to a regular room.

Have you ever wanted a drink of water so badly that you felt like you would do anything to get it?  I have.  Because of my trach, I was still unable to speak, eat, or drink anything.  I have never been a big water drinker, but I longed so desperately to have the cool refreshing taste in my mouth again.  No one could even guess how long it might be before I would be cleared to drink anything though, because in my weakened state, there was a very real chance that I may aspirate, or take something I tried to swallow into my lungs.  If that happened, I would not have the strength to cough it up, and it could set up infection.  Even though drinking or eating on my own was a major unknown, there was a very real possibility I could begin speaking again, and soon.  Plans were made to fit me with a new trach that would have a special valve which would allow me to talk on my own.  Simply being able to communicate with my own voice would provide me a much needed moral boost.

And that boost would finally come.  Not only did I receive my voice back, but I was also released to go back to a regular room and out of ICU.  My therapists could now take me into the atrium or even outside in my homemade wheelchair.  God continued to wow everyone who saw and heard about my progress.  Medically speaking the recovery and healing was light years faster than anyone ever thought, but not near fast enough for me.  I was still very aware of my limitations and was a shadow of my former self.

One afternoon, my therapist came in and started discussing what life outside of the hospital would look like.  She stated that we needed to start thinking about what kind of wheelchair I would need when I was released, because we would need to start the ordering process soon as I would need training on how to use it at home.  The reality that I would not walk out of the hospital hit hard.  I was mad.  I was scared.  I was hurt.  I was confused.

I’m so thankful that God is able to handle all of these emotions from us.  Scripture is filled with people expressing their emotions to God, even the not so pleasant ones.  Jeremiah, David, Moses, and even Jesus expressed to their heavenly father their displeasure and desire for something other than what was currently happening.  I had no idea what God was doing, but I was certain that I didn’t like it.

But just because you don’t understand what God is doing, doesn’t mean that He isn’t at work.  And just because He feels far off, doesn’t mean that He isn’t right there with you in the middle of the struggle.  Paul tells the church in Rome as he concludes his letter, his prayer for them is that God would fill them with joy and peace as they trust in Him.  And this trust would not only fill them with hope, but that this hope would then overflow in them and touch the lives of everyone around them.

This is exactly what God was doing through the Powell family.  Emma, Abbi, Jodi and I were all walking through the valley of the shadow of death, but God was proving faithful through it all, and the hope that we had in Him, was beginning to impact all who were hearing our story.  From the caregivers and teams that were treating me at the NIH, to the people that read Jodi’s updates online, to those seeing our daughters’ response to the struggles, God was using our pain to impart hope to a world that desperately needed it.

And praise Him, he continues to do that today.

But that’s the way that God works. It’s a mixture of hope AND wheelchairs. Its hope that there is a better tomorrow where we won’t have to suffer any more, AND God’s provision in the mean time. It’s hope that one day I will be able to walk again (either on this side of heaven or the other), AND God providing a way for me to be mobile in the mean time. Hope and Wheelchairs.

I’m not near as deep in the struggle as I once was. I still have so far to go in my recovery and I am far from where I want to be physically and emotionally, but I now have a bit more perspective than I did when I was stuck in a hospital bed 800 miles away from my family. In the middle of the struggle, it was difficult for me to find joy in the hope of what is to come and the provision for what currently is. I would be lying to you if I told you that I didn’t still struggle more than a little bit with my current state of affairs– I do– but even in the middle of my ongoing recovery I am able to find joy and be thankful for what it is that God has done and is continuing to do in and through my body.

I know that when you are in the middle of the garbage of life it can seem so bleak and dark. I know what it is like to want to go to sleep and not wake up. I know what it feels like to not see light at the end of the tunnel. But in the darkness of your current circumstance, do your best to pause and look around you. When you do, I’ll bet you will be able to see God’s provision for your life in your most difficult circumstances. And when you are able to see His provision, then maybe–just maybe– you can be filled with His hope as well. And that hope is the only thing that can sustain us through the struggles.

We were half-way through the transplant process and plans were now being made regarding life beyond the NIH.  Plans including therapy possibilities, wheelchair options, and how our home needed to be transformed into one that was accessible to someone like me.