Thursday, December 3, 2015

Life with D'Assisi, Continued.

It has been awhile since I've written about Francois d'Assisi, the close-to-seven year old boy I lived with for two years as a Peace Corps Volunteer.

When I last wrote, we were struggling to find out what was causing his brain lesions. We didn't know what was making him forgetful or what was making his grades drop, but we knew something was wrong.

February through June were some of the most frustrating months of my life, trying to navigate the Rwandan medical system and trying to find answers for him. We visited doctor after doctor here and had tests upon tests done, but still came up empty handed. We were told to come back in a few months "if things got worse." I wanted to scream that we couldn't wait that long, but knowing deep down that with only a handful of neurologists in a country of 12 million, they were probably doing their best. It was a terrible feeling not knowing what was making him sick or how to make him better.

Working with several American doctors, including my uncle who's an infectious disease doctor, we came to the conclusion that D'Assisi was potentially dealing with a life threatening illness like brain lymphoma or a rare disease called progressive multifocal leuko encephalopathapy. We needed tests that were not available anywhere in Rwanda, and I made the decision to fly to Nairobi, Kenya at the beginning of July with him to get treatment, where I'd located a pediatric neurologist at one of the hospitals.

D'Assisi was incredibly excited for his first flight, dancing in the airport even in the wee hours of the morning. I tried my best to hide how completely terrified I was. I hoped for the best, and feared for the worst. When we boarded our flight, I wasn't sure if we would need to stay in Kenya for a few days, a few weeks, or longer. I had booked myself, D'Assisi, and one of the nuns (who could give medical consent for D'Assisi's treatment) a one-way ticket.

The three of us stayed in Nairobi for five days, and spent up to 15 hours a day at Aga Khan Hospital seeing every doctor we could squeeze into our schedule: the pediatric neurologist, an orthopedic surgeon (for his recently broken arm that doctors at the rural hospital in Rwanda hadn't set correctly), a physiotherapist (since D'Assisi has had severe walking problems since he was little), an eye doctor (ditto that for his eyes), and an HIV specialist. We had x-rays, an MRI, EEGs, blood and urine and eye tests.
D'Assisi dancing in the hospital waiting room

It made me realize how hard parenting really is. We went to get the EEG done, where they stick a bunch of suction cup-looking things to your head and measure your brain waves when you sleep (clearly I can describe this in a super scientific way), and we'd scheduled five hours for it. When they tried to hook him up to the machine, D'Assisi cried the entire time. For five hours straight. I tried soothing him. I tried showing him The Lion King on my laptop three times. I tried comforting him and telling him stories. I thought he would eventually cry himself dry and fall asleep, but nothing of the sort happened.

That night, we had to keep him awake so we could do his EEG the next morning. I stayed up with him until 1 am, then we both got 2 hours of sleep, woke up at 3 am and drove to the hospital at 4:30 am to get the EEG done, praying that his exhaustion would overcome his fear of the brain suction cups (it worked, finally).

Probably from being in a new, unfamiliar country, D'Assisi wet his bed every single night we were in Nairobi. In the middle of every night, Sr. Agathe and I would strip his sheets, take him to the shower to rinse off, and get him a new change of clothes. Parents must the most sleep-deprived people on the planet.

Despite the many tests we had to do, D'Assisi found joy in so many things, as he always does. The elevator was a new thrill for him, and he begged Sr. Agathe and I to ride it in between doctor's appointments.

The pediatric wing had a little play place with little toy cars to pedal around it, and we had to practically drag him out to get to our next appointment.

And every ride to the hospital from our guesthouse, D'Assisi had his head out the window, taking in Nairobi with a huge grin on his face.

 It was the first time he rode on a plane, rode an elevator, rode an escalator, and took an actual shower (rather than just a bucket bath).

On our fifth day at the hospital, our pediatric neurologist told us that the testing results showed that D'Assisi had brain parasites, probably from eating uncooked pork. I started crying in her office when she told me. She seemed a bit taken aback, and I explained that I was so happy because we were expecting it to be something much, much worse. The treatment was fairly simple, just a few months of medication, instead of chemotherapy or surgery. I could have hugged her. Even if it had been something more serious, I was incredibly grateful to just finally know finally what was wrong instead of continuing in the fragile medical uncertainty. I booked our ticket home for that evening.

After four months of treatment, D'Assisi's grades are back up (he's the third in his class!), and he's back to being himself for the most part. We are so, so grateful to everyone who said prayers for us, who connected us with doctors in Rwanda and abroad, to my Uncle Butch for being an incredible resource and a true lifesaver, and to my parents who set up an Airbnb in their house to help me pay for the medical expenses in Nairobi and who offer me their continual support--even on the days I feared for the worst. We are incredibly lucky.

Throughout D'Assisi's diagnosis and treatment, I have sought to adopt him, with the support of the nuns he lives with, and the process has been just as confusing as finding him medical treatment. I had heard that foreigners couldn't adopt in Rwanda, but asked two different lawyers who said it was possible. I arranged a meeting with local government officials to bring up his case in June, but they said I had to be 35 and married in order to adopt. I'm currently 26 and single, so neither of those were likely (although the officials graciously offered to "fast track my Rwandan citizenship" when I married one of their eligible friends or relatives). I felt that I was at a dead end.

In November, I decided to give it one last shot by hiring a family law specialist who could actually argue my case. I arranged a meeting early Wednesday morning to go over my options. I was so nervous I couldn't sleep the entire night. I knew that this would be my last chance. If the lawyer said that it wasn't an option under Rwandan law, I'd know it really wouldn't be possible, at least not for another 9 years and after Prince Charming decides to show up (and when D'Assisi would be 15 years old...). I kept going over all the possibilities in my head, turning them around and back again and playing through all of the scenarios of the meeting.

Early Wednesday morning, I took a motorcycle taxi to the tribunal in my district, where I met with my lawyer to look up the actual statutes surrounding adoption, and he said that under Rwandan law it's possible, and that the other officials were misreading the text. We have a lot of document-gathering to do, and need to argue our case in the district court.

I am cautiously optimistic that things will work out. I want to be D'Assisi's mom more than anything, but I am so afraid to get my hopes up, only to have them crushed if things don't work out. I'm able to visit him once a week, but every time I see D'Assisi, it feels like he's aged two years and grown a few inches. He's almost too big to carry on my shoulders anymore. I know that I am missing so many important moments in his life.

 Not the stereotypical big ones, like school awards or birthday parties, but the small moments that are the threads in the fabric of life.

Drinking our morning tea together, daytime dance parties, reading bedtime stories, and counting the stars at night. These are the things I miss about living with him, and that I fear I will never get back.


  1. Claire, thank you for sharing your story. You truly are an amazing person and believe it or not I look up to you! I look forward to your great stories and Facebook posts about life in Rwanda. I really, really hope that things will work out for the best!

  2. I'm sitting in a café in West LA, eating an $13 salad, living the life of an underemployed and struggling comedian, trying to manage my anxiety attacks, and then this puts everything into perspective and I'm bawling and so full of awe at your capacity for love and humbled by your pursuit of it and all I can say is thank you, bless you, and if there is indeed a loving Creator, then dammit, this is going to work out. You give a new meaning to the phrase, "Be God's love." <3 <3 <3

  3. Nicely written. May God bless you and keep you in his palm. He is with both of you.

  4. Your humble strength is truly an inspiration, Claire. Thanks so much for sharing this peek into your life with us!

  5. I so hopes it works out. But I know that you and D'Assisi are lucky to have each other.

  6. You remind me of the stories from the Maryknoll magazines that my grandmother used to read to us... god Bless you!!

  7. Asante sana Jesus! I can't tell you how happy this update makes me. I have thought about FdA and prayed for his health many times since your posting and was not expecting this outcome. You are already being a good parent to him by fighting for his health and not taking no for an answer on the adoption front. May God bless all of you and may he be your child legally soon!

  8. Thank you Claire for humble,help,.... values! God bless you and keep your love forward