You will keep in perfect peace

Him whose mind is steadfast

Because he trusts in you.

Trust in the Lord forever,

For the Lord God is the Rock Everlasting.

Isaiah 26: 3-4                         

Habari yako, rafiki.

As I sat this August and September on our lovely front porch in La Grange Park, I read those

Autumn in La Grange Park, IL

words from Isaiah again and again.  Over the past 6 months, Leland and I have made many decisions that will change our lives and move us in a path that we didn’t foresee 6 months ago.  We have felt incredible peace about these unexpected changes.

In 2008, we each felt a strong call from God to come to Kijabe, to do and teach pediatric neurosurgery.  We initially thought we might spend 2-3 years here but soon after arriving in September 2010, we realized that it might take up to 6 years to train enough people to carry on the work.  We even joked about staying longer—saying that we may not want to leave.  My personal view has always been that God would just as clearly show us when our time at Kijabe should end as He had in leading us here.

Soon after arriving in the USA on April 30, 2014, Leland experience debilitating exhaustion and muscle weakness.  We decided to extend our stay in the States in order to obtain a definite diagnosis and allow him to rest.  After 4 trips to Madison to see specialists in neuromuscular medicine and infectious disease, 76 blood tests, electromyography, nerve conduction studies, and a total body CT/PET scan, the doctors have determined that Leland has Chronic Fatigue Syndrome of unknown origin.  Over the time Leland was in the US, he really never improved—he would have good days and bad days with his weakness and fatigue, but we saw no real improvement. 

On November 1, 2014, we returned to Kenya in order to train another person to take my place.  We have tickets to return to the States in mid-January 2015.  Although this is not the way we had planned or hoped to end our service in Kijabe, we see God’s hand in this, as in each stage in our lives.  We are sad to leave our friends and colleagues here in Kijabe—but are looking forward to our lives in the US.

My cochlear implant in February has exceeded my expectations and even my dreams.  In conversation, even in noise, I understand almost everything that is said.  I can now close my eyes and bow my head during corporate prayers and hear nearly every petition and praise.  I have been able to carry on conversation with my co-workers here in Kenya—even to chat with the nurses and understand the mums’ English and some Swahili.  The ability to hear has been life-changing and, to me, miraculous. 

Our first night back in Kijabe, we had a huge storm that knocked out the electricity for about 10 hours—getting ready for work in the dark wasn’t a problem since the battery powered alarm decided to quit at 5:10 am—the alarm had been set for 5:15 am.  So, we awoke (after a fitful sleep—jet lag was terrible this time) at about 6 am (first light) and were at the hospital at 6:30 am.  And, mshungao (surprise in Swahili), there was no hot water (or any water) from the hot tap, so we really felt we were back at home.

The plumbers fixed the hot water by our third day here, so we now have hot and cold running water.  Our new neighbor across the hall (a long-term missionary formerly in India) gave me some tips on handling the washing machine (I now add several buckets of water to the drum) so that it no longer takes 2.5 hours to wash one load.  I am back using my  “solar dryer” (the sun) and hanging the clothes outside—I really missed doing that while I was in the US. 

After being here for three weeks, it is obvious that Leland cannot maintain even the slower pace that he has adopted in response to his illness.  After we make rounds each morning (which takes about 2 hours), he comes back to the apartment and sleeps for up to 2 hours, then rests until he is called up to help in the theatre.  His exhaustion is visible in his face.  People stop him and tell him how glad they are to have him back—even just for rounds, or teaching.  But I can see that he has worsened a bit since our arrival.

One of the big unanswered questions in regard to our leaving Kijabe earlier than we had anticipated is: will pediatric neurosurgery continue at BKKH/Kijabe Hospital?  Humphrey Okechi was married November 8 to Ruth Muthoni, a nurse at BKKH in Entebbe Uganda.  They will be on leave for the month of November.  In Humphrey’s place, we have a visiting neurosurgeon, Dan Curry, from Texas Children’s Hospital.  He is a great clinician and teacher, and the resident and fellow have appreciated his lectures.  We also have a visiting neurosurgery resident from the University of Wisconsin, Carolina Sandoval-Garcia, who has been a great encouragement to our Kenyan neurosurgical resident, Grace Muthoni.  Leland has arranged for visiting chief residents to come in January, February, March, and April 15-May 15.  Dr. Veeti Li, a pediatric neurosurgeon from Buffalo, will make his 3^rd trip to Kijabe in July.  However, we will have great need of more pediatric neurosurgeons to provide help for Humphrey over the next year.

The new wing construction has been halted because of legal problems, and we do not know when it will be completed and opened.  It certainly will not be in our Kijabe lifetimes.  The nursing staff is being led by acting in-charge nurses (acting head nurses), and no one has been identified to direct the nursing care.  However, Elizabeth Njoroge has been chosen to start training with Veronicah and me to take care of the neurosurgical patients.  Elizabeth came to me about a year ago and said, “I want to be you.”  She has a passion for taking care of our children, and has wonderful initiative and organizational skills.  It will be a delight to have her take my place along with Veronicah.

This week, Veronicah, Pastor Mercy, and I talked with two mums about ending treatment of their children.  One was the mum of a 6 year old boy with a recurrent brain cancer—after the second operation to remove the recurrent tumor, and radiation therapy, his tumor recurred.  He is the third child, and only son.  His mother expressed gratitude for the care he had received over the past 2 years here at BKKH.  The second child is 5 months old, was born with no brain above the brainstem (hydranencephaly), had a surgical procedure to control the growth of her head, and now weighs her birth weight.  Both conversations were heart-breaking—these children are greatly loved.  We saw three additional babies this week with hydranencephaly.   Two other babies passed away on Thursday.  There are days when I come home feeling stunned by the sadness here.

hydranencephaly

Traditional healing scars

Leland’s sister Mary sent us handpainted tote bags for the mums that her garden club had made—Mercy and I spent time one morning handing them out.  It means so much to the mums to hear that people in the US, Canada, Great Britain, Australia think about them, pray for them, and want to help them.

I ask for your prayers for the following:

-For Leland to have the strength to maintain the pace here in Kijabe over the next 2 months.

-For Veronicah Njaramba, our clinical officer, who has worked heroically in my absence.  She needs encouragement and support to continue her vital role on the service.

-For Mercy Nganga, my Kenyan sister, who, like me, is approaching the end of one chapter of service to Jesus Christ—and is looking for direction for the next opportunity to serve.

-For BKKH and Kijabe Hospital, to determine the long-term commitment to pediatric neurosurgery and how each organization can support the care of the children with neurosurgical problems.

-That the legal problems encountered by BKKH in the completion of the new building be resolved so that the wing can be opened soon.

-For Humphrey and Ruth Okechi, that they may be strengthened and supported during the time that Humphrey is without a permanent colleague in neurosurgery.

-For BKKH as the organization transitions from one Executive Director to the next.

-And always, for the children with spina bifida, hydrocephalus, brain tumors, spine problems and their families—that they will know God’s love and care through us.

Take care, God bless.

Susan

Dear Friends and family,

It has been 8 months since I posted a blog.  Many have written Leland to ask in a round-about way if we are still alive.  I have started many blogs, finished none.  I intend to post this today….!

On December 21, 2013, Geoffrey Musyoka and Gladys were married in Machakos.  It was a beautiful Kambaa wedding with processions (about 3), flower girls strewing rose petals and blowing bubbles, one lady spraying artificial snow (December is summer in Kenya), all of which we enjoyed tremendously.  Gladys was beautiful in her white dress; Geoffrey looked a bit nervous but very handsome in his suit.  Although the wedding was to have begun at 10 am, the processions began about 1:15 pm and the vows were exchanged around 3:15 pm.  Leland and I were the only wazungu there; several other staff from BKKH attended.  Leland and I had to get back to Nairobi before dark since we have decided to limit our travel on the roads to daylight hours (dark comes about 6:30 pm in the summer), so we missed the reception (in fact, left just after the exchange of vows—I think there were about 45 more minutes to the ceremony).

I mention that day because, by the latter part of December, I realized that my hearing was so poor that I could no longer work safely and effectively in Kijabe.  By October, I had stopped participating in rounds—I could not hear what was discussed and found it very exasperating for me and all the others to have everything repeated.  I tried following the team and reading the notes in the medical record to get the plan for the day—but as in the US, the notes often did not reflect the extent of the discussion.  On the drive to Machakos, Leland suggested that I reconsider having a cochlear implant—by the drive home from the wedding, I had decided to do just that.

Because of the new health care requirements, I was able to enroll in an insurance plan that covered pre-existing conditions—including my hearing loss.  Before the ACA, I could not get coverage for an implant—at least not until I qualified for Medicare.  I was able to make appointments with two implanting surgeons and acquire a PCP via the internet while still in Kenya.  I left Kijabe on January 9, had my left cochlear implant on February 13, and had my first programming session on February 24.  After my implant was “activated,” the audiologist went behind me and said three colors.  She asked me to tell her what I heard—I replied, “Orange, yellow, purple.”  We all burst into tears—even the surgeon had tears in his eyes.

It is truly life-changing to be able to hear again.  At first, sound was very electronic; people sounded like Munchkins in the Wizard of Oz.  I heard noises that I could not identify—one day I heard a strange sound all day; then that evening realized that what I had heard was two plastic bags flapping against each other in the breeze through the window.  After 5 months and several programming sessions, I can hear and understand almost all speech, even at very low volumes.  I hear birds chirp, rain patter, water splash, doorbells and phones ring.  For several months, I practiced daily listening exercises on-line—after Leland came home on April 30, I have simply engaged in daily conversation.  He still is amazed at how much I can hear and understand.  My kids joke that they can no longer talk about me when I am present.  My daughter says the biggest change is that I now can stay up late and talk—before the implant I would be exhausted by 8 pm.  My son-in-law thinks it is fantastic that I can now talk with him in the car.  For the first time in 5 years, I can engage in conversation with my 5-year-old granddaughter.  It is truly an amazing, almost miraculous experience.  Every day, I realize what a gift I have been given.

Evelyn and Alex reading together

Leland came home to be with me for the implant, then returned to Kijabe.  Although he had many visiting neurosurgeons to help since his partner left in September for a 6-month fellowship in Germany, Leland was the only BKKH consultant who was continuously there until early April.  During that time, he became exhausted and had several episodes of illness.  So, it didn’t take too much encouragement from me for him to agree to come to the States for a 4-month break from May through August.

In the weeks after Leland’s arrival in the Chicago area, he had increasing exhaustion and proximal muscle weakness (upper arms and upper legs).  He was evaluated in Madison and was found to have chronic fatigue syndrome as a result of an Epstein Barr viral infection he had in Kijabe in March.  Over the past 3 months, he has had a few weeks when it seemed that he was slowly improving but over the past week, his muscle weakness has again worsened.  We really don’t know if he will be strong enough to return to Kijabe.  For that reason, we have deferred our departure to Kenya until late October.

We have tremendously enjoyed being back in the USA.  We continue to marvel at the roads, the signage, the running water (hot and cold, and without sediment).  I found an apartment in La Grange Park and moved in there on February 1—within walking distance to my son’s house, restaurants, the bike shop, a drug store, a hardware store—and most importantly, 0.7 miles from Grace Lutheran Church and 0.1 miles from the grocery store. 

For the first 2-3 years in Kijabe, I felt comfortable and happy about not having a home in the US—I would joke about being homeless and unemployed.  After 3 years though, I missed having a place to call home—our furniture and clothes that we had not given away or sold were in storage, we had no address that was ours.  So when Leland became ill, we thought seriously about where to settle in the US if we couldn’t go back to Kijabe.  Since both of us like the walkable communities here in La Grange/La Grange Park and love being near to Michael and Marisa, we started to look at houses and neighborhoods.  On May 30, we saw the house where we want to “age-in-place.”  We closed on our bungalow on July 15, moved in on July 18, and will start the renovations that will allow us to live completely on the first floor in mid-late August.  Both of us have a real sense of peace about this decision and are very grateful to have this house as our own.

Our little house

We spoke of our work in Kijabe in Charlotte NC at a BKKH board meeting and twice at our church here in La Grange. Leland was a keynote speaker at the Bethune Conference in Hamilton, ON in June and a visiting professor in Charleston SC in August.  I continue to work on the BKKH database; Leland has made revisions to several papers and submitted them for publication.  He continues to work hard to recruit visiting neurosurgeons to go to Kijabe for 2-week commitments to help his partner, Humphrey Okechi.  We hope that we both will return in late October—but if Leland is not able to do so, I will return for 2-3 months in order to train someone to take my place there, and to pack up and say goodbye to the many people who are our community in Kenya.

The summer months are usually lean ones for NGO’s.  This summer is no different.  There is consideration of limiting admissions at BKKH; this will require hard decisions not only by BKKH administration but also by all the Kenyan staff.  For that reason, I ask for your prayers for wisdom and guidance, your donations to provide for care of the children, and your efforts to tell others about the work that God is doing through BKKH in Africa.

I’d like to close with some thoughts on poverty and poor people.  Most of us here in the US have little appreciation for how deeply poverty impacts every facet of life for many people in the world.  Herman Melville said, “Of all the preposterous assumptions of humanity over humanity, nothing exceeds most of the criticisms made on the habits of the poor by the well-housed, well-warmed, and well-fed.”  Leland’s sister Mary said, “I just watched and listened to your talk at the Bethune round table conference. Wow. What an eye opener. I am afraid you ‘hit the nail on the head’ about most PNS's [pediatric neurosurgeons] not being committed to treating the poorest of the poor because they are or will be disabled.  The big question to most of the PNS's re treating the African kids is, ‘why bother’?  That makes them uncomfortable and squirm in their chairs. Answer being, ‘I'm comfortable where I am, and to commit to that would take me out of my comfort zone, salary income, etc, etc.’ Unfortunately, it takes a Christian commitment that is missing in most of them. Why would anyone want to work in such conditions as no funding, used/broken equipment, strained living conditions, and lack of support? That's because they are looking at the big picture. You have to look at, and really see, the soul of the little person inside that disabled body. Then, how can you say no?”

Take care, God bless.

Susan

Links:

www.bethanykids.org/

fhs.mcmaster.ca/surgery/isd/brt2014.html (Bethune Conference, Leland’s presentation)