Tag Archives: children’s hospital

Abu

There are two men I’ve seen, in the halls of the hospital ward downstairs, that each have a very large, benign tumor growing out of the right side of their neck and face.  Today, and every day, they tie hankies over them, to keep others from being too shocked and horrified at their appearance.  But still, seeing their right eye grossly misshapen, and pushed up to the side, a good 6 inches away from where they should be, is shocking.

I had prepared myself today, with a smile on my face, ready to look them in the eyes and offer what I hoped would be solidarity, courage, understanding, empathy. But, as I walked around the corner and saw Abu (not really his name–I can’t spell it, and would like to give him some anonymity to share his story when and if he chooses), our eyes locked, and I’m ashamed to say, I recoiled. Hopefully it was only inside, and that my smile stayed in place on the outside. And then I looked at his mamma, sitting, tired and scared, by his side. And my heart broke for her. And I smiled, deeply. Warmly. With empathy and understanding. Because being a mamma, with a hurting child, whom others look at strangely, wondering what all is wrong, is something I understand.  I recognized in her eyes the look of exhaustion, tinged with hope, of someone who has prayed and begged and bargained for the life of her son, while sitting by helplessly as he suffered.

I bet his mamma was thinking about this Wednesday.  Abu is no longer the emaciated 64Kilo/103lb man that arrived onboard. He has gained over 10Kilos/22lbs. I’ve wondered what on earth is in those IV’s: Guinness? Ensure?  Whatever it is, it’s working.  Abut is now strong enough for surgery.

Abu used to be strong, and handsome, representing Guinea as one of their elite football/soccer players. Think tall, dark, David Beckham. But five years ago, a small lump began to grow on the right side of his neck. And for the last two years, he’s been unable to eat solid food. He had a few weeks left to live.

You’d think my vanity would stop me from admitting this, but injustice drives me to do some crazy stuff…A few days before leaving on our epic year of adventure, a mole on my neck got red. I called my doc and was irritated at the two-day wait to get an appointment.  But, as soon as she had a look at my mole (which until then, had been quite cute, but if I’m totally honest, may have been camouflaging a zit), she cut it off. Without even asking.  Now how is that fair?  Why is it that I received the pinnacle of science and medical care? And Abu has lived FIVE years with a tumor that is killing him? I’m not sure who to be angry at…but I am angry. Abu was, is, dying. And his mamma’s heart is broken.

His surgery on Wednesday offers hope. Without it, he will die.  Soon.  But, the surgery is not a guarantee that he will live. In addition to the usual risks of general anesthesia, Abu’s tumor has grown through the vital nerves and arteries in the back of his neck.

Because of the tumor and his misshapen face, Abu is hard to understand.  But, he, and his mamma, have talked with several people about the risks. About the risk of death. Or a stroke. And you know what Abu said?

“This isn’t living.”

“I want to take the risk.”

If Abu and his mamma have the courage to take the risk, what about me?  What about you? Where are we letting fear stop us from living?

Monday, Tuesday and Wednesday, you better believe I will be praying for Abu. For the doctors. For his mamma.  For his life.

I know that life isn’t fair. And I know that Abu may not live beyond Wednesday, and that he didn’t receive medical care that would have prevented this crossroads. And on Wednesday I will go and visit Abu’s mamma, and sit with her during his surgery.

But, I am also going to use this opportunity (that I wouldn’t wish on any mamma or daddy or elite soccer player or any person, in the world) to examine my life to see how I can make a difference in the wellbeing of other people’s lives, and in what areas I am not living. Where I need to take a risk.

Will you make the same choice as Abu?  And please pray for him too?

15 Comments

Filed under November 2012

Diving into the deep end

Yesterday was my first Dental Screening. I volunteered to work security. It’s kind of like overseeing, with a team of other people, hundreds of starving people lined up for a free soup kitchen that is their only hope for a meal. Ever. But this was for people who need to see a Dentist. And most of whom didn’t speak English.

I had in the back of my mind the seriousness of the endeavor, as Dreamboat had been to an Eye Screening (for double cataracts) last week, where the crowd had gotten out of hand. When the door they were pushing against began to buckle, the screening was quickly cancelled.

We left the ship at 07:00 (we use nautical time here) and were instructed what to do, how to use our radios, and outfitted with bright orange vests. No piece of clothing has ever given me such authority before. Loved it.  (I’m thinking of wearing one daily to increase the respect I get from the family.)

It was a short drive to where the offshore dental team works, and when we arrived there were already hundreds of people lined up in mostly orderly rows divided by: men, women, and children.  After tucking some cash into the back of my pants (next time I’ll wear something with pockets!), I walked down the three lines and chatted with people. Greeting old and young men, holding babies, and talking with the women. And grateful my French was coming back.

They were beautiful. Colorful (I LOVE the fabrics here). Faces full of hope. Most were full of smiles. Those that weren’t smiling were holding hands to swollen cheeks, some with tears streaming down them, with obvious infection and lots and lots of pain.

Ever had a toothache? I can venture to say it HURT. My ability to consider other peoples’ feelings goes out the window when something really hurts.  But maybe that’s just me…

Hordes of other people, those in need of non-dental medical care, milled about. Waiting. Hoping. Fathers brought their sons to me and showed me disfigured legs. Mothers brought their daughters to me and peeled back their little fingers to show webbed hands from burn accidents. A man brought his blind father. A woman raised her shirt to show me growths in her breast. The need was heartbreaking and overwhelming. I was starting to regret the vest. Many of these beautiful, hurting people I sent away with a “Je suis desolee” [ I am sorry]…

…But, I am not a Doctor. Today is for teeth problems only. For those who need a dentist.  Watch and read The Journal for news if there is another General Screening.

Those I turned away thanked me for my time. Thanked me. One father said a blessing for me as I walked him and his young son away. I was stunned. That probably wouldn’t be my first response if one of my kids was turned away. I was humbled, amazed, and inspired by him. By the beauty I have encountered in the people here. Warm. Gracious. Kind. Honoring. Even in the face of incredible suffering.

Some of these, whose ailments were operable, we were able to quietly lead away from the crowds and behind security, to a medical screener, who took their contact information, to reach out to them in a couple of days.

I planted myself at the front of the line, just to the side of a very large puddle. I thought it was safer there. Less emotional land mines for me.

As the sun began beating down full-force, some of the little children began to fidget and cry.  One mama brought over a piece of cardboard, so her kids could rest their legs and sit for a while.

The adults explained to me that many had spent the night on the street (strong word for the dirt-packed, trash-littered, grass & mud-lined place that it was).  Some had been there since 02:00.  All were tired. Most were hungry.

As surreptitiously as I could, I pulled a sweaty 10,000 GFN ($1.42 USD) from my yoga pants and asked the security guard (a handful of whom Mercy Ships hires to secure their off-shore sites) to negotiate and buy bread rolls from a woman carrying them, in true African fashion, on top of her head.  She lowered her metal pail, and forked, hopefully fresh, rolls to the children.

Snapped with my phone to not attract the military protecting adjoining buildings from photographs.

Most of the women had obviously rotten teeth. They explained that they brush regularly.  But difficult pregnancies, with lots of vomiting, eats away the enamel. It’s one of the hordes of unpleasant reasons I stopped having babies. I would be waiting in line right there with them if I didn’t have access to the dentists I saw regularly through each pregnancy. And if I were born here, to similar circumstances.

As time wore on, the sweat beading on my upper lip began to bother me. Instinctively I brushed it off. And then thought of the disease. The cholera epidemic here. The germs I must have on my hands from all whom I’d touched. And then transferred to my face. And then I was ashamed for thinking of myself. For worrying about keeping my hands sanitized, when these women with whom I deeply identified, were facing such bigger issues. And would continue to face, long after the few hours I volunteered.

I’d like to say the dental team arrived and all ended well, and eventually it did. I was truly amazed. But, it didn’t end without bringing to light corruption and sadness.

The security guard at the front of the line, against Mercy Ships direction, had been making a list, and probably taking money, to secure places at the front of the line.  Him moving people around almost started several uprisings. He messed with the wrong mama’s! But, he’s lost his job, the waiting people were calmed, and then eventually screened by the dental team. Those with urgent needs were seen immediately. Many were given appointments for today.  Many were also told to come back Monday and Thursday of each week, until all are seen.

When my radio cackled it was time to leave, I wasn’t prepared to go. Not ready to leave. If it weren’t for the meetings waiting for me back on board, I would have stayed all day, sharing in the hurts and celebrating the joys with these inspiring people.

Physically, it was a tiring day.

Emotionally, it was exhausting.

And rewarding.

And, why I’m here.

8 Comments

Filed under September 2012

Peanut

Today has been hard. And I’ve momentarily questioned our decision. And I’ve been shaking all day.  Well, since Peanut’s therapy at least.  His physical therapist (actually, she’s one of several) does not want us to leave on our year-long-big-adventure. She just doesn’t.  She’s scared. And angry.  I could see it in her eyes.

And then when she said, “It makes me angry that you would do this to him”, it sort of gave it away.

DO THIS TO HIM?

OK.  So I ranted for three lines and then deleted them. This isn’t about defending my love for him, so I’ve decided to calm down.  This is about the decision to travel for a year, and how that affects him.  And how we’re building time for his therapy into our weekly schedule/curriculum, so that he continues to get the support and encouragement he needs.

I guess I should back up and tell you bit of his story. You can also read the Times article.

When my Peanut was almost 4 months old, the driver of an SUV — after drinking a few beverages over lunch, while talking on her cellphone, checking her messages from her new boss, and wearing an ankle cast that got stuck in the accelerator— plowed through the wall of his day care. And hit him. Peanut was moved 10ft and pulled out from under the front bumper of the SUV.

His immediate diagnosis was “a compressed spine with injuries to multiple vertebrae as well as misalignment of his cranial plates”.  Shortly thereafter he was diagnosed as “Failure to Thrive” and put on a feeding tube (through his nose) that interrupted his natural hunger cues, and then fitted with restraints to keep him from pulling it out. (Dreamboat and I were taught how to hold him down and reinsert the tube each time he pulled it out).

It took time for the whammy of “Global Developmental Delay resulting from PTSD” diagnosis to appear in his chart. There may have been a concussion.

We spent almost a month in Children’s over four hospitalizations that autumn, mostly related to breathing issues (he wouldn’t. or couldn’t. or didn’t. not sure which).  And then lots, and lots, and then some more, clinic visits, mostly related to eating issues.  All while Peanut’s PTSD got worse, and he withdrew more, and the trauma to his new word continued.

There were times I thought it was over. The end of his life with us.

Many a night I sobbed quietly (and sometimes not so quietly) in the shower in his hospital room.  Doing my best to face how I would deal. And who I would chose to be, when he died.

But he didn’t. And I’m doing a happy dance here.

And over time, and with lots of love and countless therapies. (Really – countless…I print a schedule each week, with his myriad of appointments color-coded, so we can try to keep on top of it all.) He is strengthening. He is growing (FINALLY). He is improving.

The driver of the SUV, 40, who was arriving to pick up her granddaughter, later plead guilty to reckless driving and reckless endangerment. She received a 12-month suspended sentence and 240 hours of community service.

There is no prediction for what Peanut’s future will look like.  But there is lots of hope, while trying not to set expectations too high. Peanut started walking on Christmas day of this year.  Just this month he fed himself a small meal.

Those are the facts.

The emotions are more complicated.  There was relief that he was alive. Gratitude that his injuries weren’t worse. Grief. Anger. Denial. And lots and lots of fear…and the hours of crying in the shower. And tears at the most inopportune moments, like watching the parade on Christmas Eve with the older kids, and aching for Peanut, and Dreamboat who was with him in the hospital, to be with us. There was also time spent with a counselor for families of high-needs children. And lots of conversations with Peanut’s siblings, to help them process it all as well.  And there was lots of love.

And we’re still on this journey.

And there’s boat-loads more to say and lessons learned.  But I’m going to save them for another post. I’m not quite ready.

So, back to the Big Decision…

I may not schedule 11 different therapies a week for him, like I did at first, but I will make sure that Peanut gets the attention, encouragement, and support to continue developing.

There will be LOTS more celebrated milestones.

And one angry therapist won’t deter me from what I think will be a magical year of growth and learning for each one of the five of us.  EACH and EVERY ONE.

Sometimes, you have to push through the fear to accomplish your dreams.

25 Comments

Filed under Aug 2012