most babies are practically born smiling. i think there is an important story behind a baby boy who never smiled, ever, in his short life. it is a sad story, to be sure, but one that needs telling.
little jimmer was my friend sally's foster baby. now, sally is a story in her own right, to be told another time. she was a foster parent through an agency called "Best Nest" based in philly, who placed medically fragile and terminally ill kids. we met at a foster parent training session, and became fast friends. sally specialized in the toughest cases, the heartbreakers.
sally and i became each others "respite care" parents. since our kids were high skill levels of care, it was hard to find a place to put them if we needed a weekend off. so we sometimes traded babies. little jimmer was one of them.
jim was born with short gut syndrome, meaning he didn't have enough bowel to process nutrients necessary to survive. he was on a complicated mix of intravenous and tube feedings, but was growing and staying healthy. he was one of sally's babies that was expected to live a full life. when he got older, surgery would help him to be able to eat normally. he just had to get older. that was where we came in.
now, the thing about jimmer was that he never smiled. not once in his entire life, and it was not for lack of sally's trying. she loved him to pieces, as did everyone of us who ever met him. this little guy just looked out on a life that he could only guess at, from a place where none of us had ever been. there has to be a special loneliness in one of those places. what a terrible burden for little hearts to bear alone.
jimmer came to stay with us for a few days when he was 17 months old. his big eyes in a somber face watched every move you made, every kiss you gave, every procedure you performed. i can't even remember him making a noise, no matter what you did to him. he was like a silent referee with no whistle to signal "time out" when the game got too rough. what a fragile, tough, broken baby he was. i adored him.
life in our house went into hyperdrive when jimmer came, with all of his equipment in tow. special pharmacy arrangements were made to obtain the hyperalimentation (intravenous) feedings. we had to do some of the final mixing at home, injecting the unstable ingredients, using sterile technique, in the last minutes before infusion began. the infusion ran overnight, for 8 hours, and the pumps needed frequent monitoring. the IV was run through a Broviac catheter which was implanted through his chest wall into his heart. unlike most implant devices, the Broviac was a tube that stuck out several inches from the chest wall, just begging to be tugged by a little fist. we had a big obsession with keeping that intact, and the dressings clean, to prevent infection.
jim also got tube feedings of special formula during the night. unlike most of our kids, jim's feeding tube was not implanted in his abdominal wall. a nasogastric tube, it had to be inserted through his nose and down into his stomach. placement was important, because if you ended up in a lung, you could literally drown them. it was a two person operation, and kinda scarey, but usually necessary at least once a day, as it was hard to anchor in place, and even harder to keep little hands off of it. but we did consider the yanking of an NG tube highly preferrable to the yanking of a Broviac, and accepted it as a small price to pay in the long run.
little jimmer's stay this time was uneventful (although we probably had a different definition of "uneventful" in our house, as compared to most) and we did the intricate "changing of the guard" after several days, and got him safely home to his mama.
or so we thought.
several days later we got a call from the children's hospital where all our babies get treated. little jimmer was in pediatric intensive care, and not expected to live. sally was inconsolable, powerless to save the one baby she had expected to actually grow up. i was sick to the very bottom of my heart, when i heard the reason why. jimmer was septic, and his organs were shutting down from a fulminating blood infection, most likely contracted by a break in sterile technique by some caregiver in his very recent past.
it is hard to breathe when judgement is coming down all around you, and you know you cannot go back to find the error and make it right. even worse is the uncertainty of not knowing just who, in what second, allowed the fatal germ to break through the mighty fortresses we try to build around these kids. but the walls were breached, and jimmer died later that night, a tiny warrior who had yet to find a reason to smile. a part of me died with him.
no one, ever, points the finger at any foster parent who loses a kid. we all know going into this that if we measure success by survival, we are failures before we start. we know that we are doing an impossible job, under impossible circumstances. being imperfect humans, mistakes will happen, and we can only do the best we can for these kids, and love them hard while we do.
the funeral was rough, as all of the baby's funerals are. it was made tougher by knowing we lost one that could have lived, long before we won that first smile. i wrote a song for him, and when it was read at the funeral, alot of parents wept, because it was a poem for all of our little angels, gone too soon.
i never cried for jim, until this morning, when i knew i had to get this story out of my heart and into the healing light of day. i know it is selfishness that drives alot of my writing, as there is little for you to get out of what i have to say, but it feels good to get these stories out, leaving a little vaccuum behind, where i hope forgiveness and love can rush in to take their place.
i was loaned a scanner recently, and last night i was able to actually make it work. i'll be able to save and share photos that have been languishing in boxes, finally!
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