My photo
mother of josh, richard, and mutt. lover of books, yarn, and the quiet places. spinner, knitter, kayaker, survivor, vandweller, warrior.

Tuesday, March 04, 2008

little jimmer

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.


michael... said...

i belive we come into this life knowing what lessons we'll face - what challenges we'll endure. i believe we agree or decline to enter this set of circumstances at the soul-level. We come into this life to learn soul lessons, and to contribute to the betterment of the individuals we'll touch.

What an honorable role jimmer played... how heroic. Even after his passing - he's teaching someone to soften the heart and honor the wounds...

Is that not worth the pain, for all concerned?

twokniveskatie said...

i knew i could count on you for a different simple and real. what a better way to remember him.....

thank-you. you are a dear friend.

michael... said...

Love you too...

stranger in a strange van said...

thanks for the good cry in a public place...
your stories are valuable to us, they teach us about things we haven't directly experienced. no need to feel selfish about writing them, we are hungry for them.

Anonymous said...

It's been a long while since I read anything so raw and real and moving as this, particularly on the blog of a complete stranger.

I've never even commented here before, but I found you through Tara (who doesn't know me, either), and I have to say I look forward to your blog entries as much as hers these days.

Thank you for sharing this story with me. Sometimes we have to shake the sadness out of our branches and let it settle before we can stretch and feel the light and the breeze again.

cile said...

Thank you for sharing your story and for keeping the courage to understand how truth heals.

davka said...

wow. this story needed to be told because i needed to hear it. who ever gives blessings and praise to the people who struggle so hard for the small smile of another person? beautiful and so sad and so inspiring.

the writing is excellent as well.


Anonymous said...

Thank you for little jimmer's story. My daughter's God mother is a woman named Janet Henry. For years and years she took in foster kids. She specialized in older ones that otherwise would have to go into group homes.

One day they begged her to take a baby. No one else could take her at that time. Janet cuddled her and all the kids in her household loved and held her. Then she died. Janet was devastated, but the story sounds very much like jimmer. We all know the baby was sent to Janet to get unconditional love before she died. God knows exactly what he is doing. Janet's life was profoundly changed from this experience as it sounds yours was, too. Thank you for being you :-)

WendyTheWanderer said...

I was thinking about Janet Henry and found a link for you...

I bet you would love each other :-)

Nora said...

I would hug you if I could.

A Gypsy's Daughter said...

to be loved, and cared for, and safe as a person, but especially as a child, is to be whole as God intended. you gave that. you created that for a life you didn't create. i need to know that that kind of love exists.