Dear Sombo,
I won’t forget
the day that I first met you at the Pediatrics Ward. You were lying still, your
lips blue, your breathing labored. Your sweet face told me you were born with
Down syndrome. Hospital staff, fellow patients and visitors looked at you
with a mixture of concern and curiosity, maybe with a hint of fear. Children who
are “different” are watched with suspicion in this culture. I smiled at your
mother and tried to talk to her but she only understood Mende, a language I
have not been able to capture. Your father spoke Krio, so he and I talked about
you: how you were the last child born to your slightly aging parents. He told
me how up until last Saturday you walked and talked and played. And then
suddenly you got sick. Very sick. “Malaria and pneumonia,” my doctor husband
told me. “And her heart is having trouble too.”
I met another
lady at your bedside. She had a sweet smile and spoke Krio. Her face showed
only concern, not fear. Soon I found out she was the mother of Ivril, the
teenage girl with Down syndrome I had met in town. The mothers had realized
their children were “the same”. And during your admission Ivril’s mother was a great
comfort for your mother.
Slowly we began
to see some improvement. You opened your eyes and looked with interest at the “pumoi”
(white) doctor who came to check on you every morning. And when I brought you a
soft, white toy seal you smiled and held on tight to him. When the time came
for you to go home you still were not strong enough to walk. So I took our car
and drove you and your mommy home. When we got down from the car by the little
lane leading towards your house, your sister came running up to you: “Welcome!
Welcome! Welcome!” For her you were not “different”. You were her sister and
she clearly loved you.
Over the next
few weeks we visited regularly. Other people came along: my husband the pumoi
doctor, a nurse and a special needs teacher from America, another friend, and
another one, and another one… You clearly enjoyed the attention. Your big smile
told us you were happy to see us, even though your only words in Mende were
often “Go away”. It made us smile. It made me sad too. Where had you learned
those words? Was it what other people told you? Or did you learn them to defend
yourself from people who did not treat you with the kindness you deserved?
Slowly you
regained strength. On December 17 you came beautifully dressed in your “Ashobi”
(matching outfit) to our Christmas Party. Did you understand what we tried to
tell you? That you are special, precious, created by our good God? That this
same God sent His child to this world to make all things well again?
In January you
came back to the hospital. Our new ultrasound machine made it possible for the
doctors to check your heart. “Tetralogy of Fallot”, was their conclusion. It
could be fixed, but not in Sierra Leone. Should we consider sending you abroad
to have your heart repaired? Was it worth the pain, the trauma? Would the
quality of your life really improve as a child with Down Syndrome in Sierra
Leone? We were not sure… You were happy, and loved; very much loved by those
around you. But you were also vulnerable--without education, and always
dependent on others. And that would not change.
And then two days
ago, we met your father on our evening walk. “Sombo has died,” he told us, sadness
on his face. “She was not sick. She just started to shake, so her mother took
her outside. And then she was gone. We buried her today.”
What happened? We
don’t know. Most likely your little heart failed.
Today we took the
long walk to your house. Your father had gone to the mosque to pray. Your mommy
cried softly. “Her time had come,” your big brother told us. “God took her.” “I
believe Sombo is in a good place now”, I told your mommy. “She no longer
struggles; she is well. But we will miss her.” And thinking of the many
misconceptions about disabilities in Sierra Leone, I added, “Thank you for
caring for her. I know God will bless you for that.”
And so we say
goodbye, Sombo. We are grateful for your life. You have gone before us. You are
seeing the face of Him who told us: “Let the little children come to me and do
not hinder them, for the Kingdom of Heaven belongs to such as these.” One day we will meet
again. We will all wear our white “ashobis” and bow before the throne. No more
syndromes. No more broken hearts. And He will wipe away our tears.
“When we all get to heaven, what a day of rejoicing that will be.
When we all see Jesus, we’ll sing and shout the victory!”
Sombo at our Christmas party, wearing her "ashobi". |