On Wednesday this week, i (Susan) went into the Calgary MCC Office to work for the day. We had a staff meeting and I was asked to lead the devotional. Someone asked if I could share the devotional on the blog....so this entry may be a bit longer than usual.  

I started by reading the poem Rod wrote about 6 months ago. "Are you Listening" (Blog entry  February 10, 2012)
The solace Rod speaks of carried him through the long days, weeks and months in bed while his body was racked with the intense, unrelenting pain.  He could have sunk into the utter despair he so honestly felt, but he stayed "in the game" and in doing so drew us in with him...to persevere, to seek the next step, to respond to opportunities as they opened up…and they did!! What began as an ray of hope beaming into the "wisp of solace"…seemed to slowly spread the light of possibility and promise as we decided to take the risk of going to the Netherlands for the implant.  The persistence, responsiveness and skill of those involved payed off and the implant is successful,

Over the last weeks several people have commented to us that “it is amazing how God orchestrated all these details for you.” Or “Wow, this is way more than coincidence.”  We believe that all of this was truly more than a coincidence…And we believe that God did not orchestrate this. If so, God would be the director and we the puppets or passive recipients of miraculous intervention.  Miraculous interventions happen, I am sure. But I think that in this case, the miracle is in the listening, the responding, using the skills God has given and developing the disciplines needed to endure and persist, and ultimately the work of the Holy Spirit among the players involved.…This is hard work and has left us exhausted -- much like players after a hard-earned, but exhilarating game of basketball. As I mentioned in an e-mail when we first heard that we received Alberta Health Funding:

“I have been sitting at Joya’s basketball games recently.  Sometimes I imagine God as the best of the Coaches of this game called LIFE – prompting and longing for each player to be in the right place at the right time. Making the right plays and using all the ability they posses and the skills they have learned.  This is one of those “beautiful plays” and I imagine God is rejoicing as much as we all are. Although you all may not have been, “on the court” ,,,your presence to support and encourage, to cheer and provide the “water bottles” to sustain us…was invaluable.  You "showed up" in significant ways.

This game of life is complex…Simultaneous games play out differently for all of us.  And yet we have the same incredible Coach.  I believe that it is not about winning as we define it or about certain outcomes… but about playing as team members with all the talents, skills and perseverance and attentiveness that we possess…so that we are "in the zone" and beautiful and often unpredictable and miraculous plays can happen and ultimately there are no regrets.  I see this evident in the lives of Anne and Henry, in the experience of various staff members who are supporting dependant family members, in the work of our MCC programs – CASA, COSA, IVEP or Community Conferencing and in the simple act of “showing up” with each other and with our constituency.  In all of these aspects…there are miracle moments when we are responsive and attentive as a team to the training of our Coach – to the nudgings, the encouragement, the instruction, the calling…. And ultimately the celebration and exhaustion of a game, well played.

I think the apostle Paul was aware of this

In The Message, Hebrews 12 :1-3 "Do you see what this means—all these pioneers who blazed the way, all these veterans cheering us on? It means we'd better get on with it. Strip down, start running—and never quit! No extra spiritual fat, no parasitic sins. Keep your eyes on Jesus, who both began and finished this race we're in. Study how he did it. Because he never lost sight of where he was headed—that exhilarating finish in and with God—he could put up with anything along the way: Cross, shame, whatever. And now he's there, in the place of honor, right alongside God. When you find yourselves flagging in your faith, go over that story again, item by item, that long litany of hostility he plowed through. That will shoot adrenaline into your souls!"

and 2 Timothy 2:3-7 (also quoted from The Message) "So, my son, throw yourself into this work for Christ. Pass on what you heard from me—— to reliable leaders who are competent to teach others. When the going gets rough, take it on the chin with the rest of us, the way Jesus did. A soldier on duty doesn't get caught up in making deals at the marketplace. He concentrates on carrying out orders. An athlete who refuses to play by the rules will never get anywhere. It's the diligent farmer who gets the produce. Think it over. God will make it all plain."

We are so grateful to God, who is the central part of this experience. There are many images that can apply to God.  For now, to think of God a Coach, means that depends on us to make the plays and create the game….let us not give up.  Right now Rod and I feel exhausted, but we celebrate a game played well and we want to thank you for the ways in which you supported or were part of the team effort.  It is now time to rest as we wait to understand the full implications of this technology for Rod.  We will try to continue to capture Rod's progress on a weekly basis on the blog.

Yesterday, Easter Sunday, we left Nehterlands at 12:30 pm.  Om Jaap and Tante Tobia drove us to the airport in a rented accessible bus.  It was hard to say good bye!!  When I was finally seated on the plane, I noted to Susan that the pain levels in my feet were actually at 0 on a scale from 1 to 10.  (She leaned over to check if my feet were still attached!!) .  The flight was remarkably different from the trip to the Netherlands only one month ago.  I was able to recline without my leg pillows and wool mattress pad.  I enjoyed the meal and wine, got up to the walk to the toilet , engaged in conversation and watched 2 movies.   

We arrived in Calgary  at 1:30 pm after a 9 hour flight and were surprised by a group of friends: Jon/Tracy/Zander Micah, Pastor Mike/Cheryl, Anne /Henry, and Linda D. met us at the airport.  Somehow the short moments together in the airport became a celebration that echoed the Easter theme!  Thank you!

Although  the four of us are physically back in Olds, our minds and hearts are scattered between here, Netherlands and beyond.  Today as we sat around the supper table (enjoying the meal provided by Nola Brown), we reflected on the last month.  We realized that for each one of us the reality of  my much improved pain control remains rather illusive.  Although I can speak of the change I feel inside, outwardly it seems to Susan and the girls that not much has really changed.  With the continuing exhaustion, and with the struggle of decreasing medication levels, it is sometimes hard for others to concretely understand that my pain has, in tact, decreased.  The effects of pain have been replaced by a different set of challenges that wear on me.  I need to spend a lot of time resting and then, gradually, I will begin to figure out what the next chapter will look like for me.  This transition, with all it's challenges and joys will affect all of us.  With this in mind, our family has decided that it would be best if the next weeks and months were guided by the same principles that have been part of our lives over the last  year in particular:
  1. No expectations
  2. Be Patient, PACE 
  3. Hold things with an open hand
  4. Be content with however things work out 
  5. Celebrate the moments as they happen
  6. Understand the need for caution
  7. TRUST that the implant is working and do not worry.
There have been so many people that have walked this journey with us and provided support in various ways. We would love to thank each of you individually, but will not do that here because we will inevitably forget someone.  So if you are reading this blog , please accept our thanks for the support you have given.  As Susan goes back to work tomorrow and the girls go to school, we may not have time to update the blog ...but we will try to do so on the weekend -- just to provide a progress report.
Today it felt like another chapter of this journey came to an end and another is about to begin.  As we sat for the last time together with Dr. van Praagh and Misha, it was almost like a debriefing for each person.  Not only did today's visit provide us with an opportunity to cover last minute questions and instructions for the future, we also reflected on the change that has occured in my physical wellbeing over the short span of less than one month. 

Today, Dr. van Praagh shared with us that prior to our initial contact with him, he had only just encountered the Nevro technology.  He also indicated that initially he found himself responding very skeptically to the claims that Nevro was making. Nevertheless, with a persistant Canadian "knocking at his door" and an equally persistant Dutch aunt advocating on his behalf, he made the decision to proceed with the implant for me as a way of gaining first hand experience with the technology.  Moreover, after reviewing my medical files, Dr. van Praagh recognized that my situation was about as complicated as it gets, and he decided to respond out of sincere human compassion.

However, it was only today, that he expressed to us his initial skepticisim concerning Nevro's claims.  With this in mind, it was extremely interesting to hear him to speak of the Nevro technology as a REVOLUTION rather than an evolution of spinal cord stimulation technology -- the first radical shift that he has seen in his 20 years of practice. It was also extremely satisfying to hear him speak of his hope for other patients for whom he has had little to offer. Now, with my success in front of him, he recognizes potential for other complicated patients. 

If ever there was any doubt about coming half way around the world to the Netherlands for a anew, expanding technology, all doubt has been erased in our minds.  Here in the Netherlands, the right combination of compassionate medical staff, revolutionary technology and premiere facilities  came together tp create a success for me.

This is by no means the end of the journey, however.  Like we have said before, time is going to b e needed for both my mind and body to heal.  Today provided a poignant reminder of this fact as the most recent drop in my morphine levels (now at 100 mg a day where they were at 8,000 mg 3 months ago) caused withdrawal symptoms to set in: muscle aches, head aches, hot/cold flashes, upset stomach, diarhhea,  With this report, Dr. van Praagh revised the schedule to drop very slowly over the next 9 weeks.  I am already counting down the days untilI  I am morphine free.

Tomorrow, I will share a bit more about my thoughts on the "next chapter". Right now, I am feeling to lousy to continue.

OK. It’s been 4 days since we updated the blog and it is time to fill in the gaps.  This is a picture from our trip to the Kroller- Muller Museum today.

On Saturday after a late breakfast, we went with Geertje to the Appenheul – a beautiful park in Appeldoorn that is home for a wide variety of monkey species.  I used my wheelchair for the few hours that I was there and walked a few times for short distances.  On Palm Sunday, Susan took the girls to a Catholic mass at a local Cathedral – something they had not experience prior to this.  I stayed home and saved my energy so that I could join everyone for dinner at the Pannekoeken (Dutch pancake) house with Alice’s daughter, Martine, who came from Amsterdam to connect with us.  Over the weekend, I began to feel the positive effects of the change in the stimulator program.  The coverage in my feet was much better.  I also continued to drop my medication levels.  I realize that I have a  lot of work to do to get my muscles on my back and legs into shape again.

During my times alone on the weekend, I realized that I need to work on my not allowing my expectations to set me up for disappointment.  During my 18 months in bed prior to coming here, I learned that I needed to let each day unfold as my body allowed.  This principle still applies to my life as it is now.  It will take time to find my equilibrium and I need to be patient.  It is too soon to try to envision or imagine what my future holds. I just need to take a moment at a time and appreciate that things i am able to do again because of lower pain levels.  It seems so basic, but it is so difficult to do.  With this renewed understanding, it has been a little easier to enjoy the last two days. 

On Monday we were blessed to spend the afternoon with Om Jaap (Susan’s Dad’s brother) and Tante Willemien.  We hosted them for lunch and caught up on their active lives and that of their children and grandchildren.  As extremely vibrant people in their 80’s, they are inspiring.  Tuesday (today) brought more of the same “warmth” as Tante Yvonne (also in her 80’s) came to visit.  After partaking, once again, in the essential Dutch treats (taartjes and Coffee) we spent a wonderful afternoon at the Kroller-Muller museum – about 20 km from where we live.  We enjoyed the very fine art – including an extensive Van Gogh collection which we agreed was our favorite. To top the day off, Tante Yvonne joined us at our dinner table this evening and regaled us with countless stories of her childhood which she shared with Susan’s Dad who was only 11 months older than her.  If only we could be as energetic and positive as she, Om Jaap and Tante Willemien when we are in our 80’s, we will be extremely blessed. 

    Rod and Susan

    "If Pain is the ring, Frodo is to Rod as Sam is to Susan."
    (see 02/07/12 for an explanation)

    for the FUNDING progress update 

    A theme song:
    "We Come" 
    by Kim Thiessen
    (Kim works in the MCC Office)

    Not seeing the blog post your looking for? 
    click on the month below.

    April 2012
    March 2012
    February 2012

    RSS Feed