Wednesday, August 3, 2011

Jessie Miracle

I have put off writing this post for weeks. Not having internet gave me my first excuse. Being busy and out of town gave me my second. Not wanting to start off writing again with this post was my last. Now I've run out of excuses....

Note: This post should have had pictures but Tom worked long and hard on my camera only to find that my SD memory card is corrupted. So sad! If we manage to resurrect it, I will share photos later.

Jessie was a miracle from the beginning. As I wrote before, we fully expected (and were prepared for) Jessie to die at the beginning of July. But somehow she pulled through and hung in there. The last time I shared about Jessie we had begun giving her HIV medicine. She had to get nearly 8 mls of medicine twice a day. Keep in mind that her feedings were only 5 mls at a time. Her system was getting flooded with medication. Those first days on ARVs were rough. Jessie seemed to be in a state of hibernation. The tube in her nose was the only way she was getting her nutrition. Her tiny little face was a mask of medical tape and duck tape on top of that. One more use for the best tape around.

Then, the next miracle! Suddenly she began looking much better.She began to look around more. Her eyes were clear. She acted like she wanted to eat on her own. Finally, early one morning, the tape on her tube loosened enough that the feeding tube came free and we decided to remove it. Jessie still struggled to eat entirely on her own but with the help of a syringe we managed to keep giving her the amount she needed.

The day Jessie gained an ounce we all danced around the kitchen. Two days later there was a tiny amount of gain again. She was still seriously underweight--at 3 weeks old she only weighed 1.950 kgs. (less than 4.5 lbs). 

Jessie began behaving like a normal newborn baby. Waking to eat every hour or two and then sleeping peacefully in between. She was still cuddled nearly every minute of the day. There were always hand and arms ready to hold and love on her. We all enjoyed every silly expression, every stretch, every bit of fight she had inside her. She had many nicknames: turtle, ET, monkey, old man, froggy--she was so expressive.

We still couldn't get her to gain weight properly though. Two days in a row when we weighed her there was no discernible weight gain. Then, terribly, a loss! We were so disappointed. AIDS is sometimes called the wasting disease, but to see it happening in front of your eyes and on a tiny, little baby is heartbreaking.

Later on the night of the sad weight loss, Jessie's body temperature plummeted. She regressed to the state of hibernation again and we had a harder and harder time getting her to eat. We made the difficult decision to reinsert the feeding tube. She was once again getting her nutrients in but seemed to be doing worse than ever. By Sunday night I was sure it wouldn't be long. I took the first night shift and then turned Jessie's care over to Meghan at 2 AM. I didn't want to let her in on my fears but she picked up on them anyway. Forty-five minutes later I woke up and went out to the living room. I found that Jessie had passed on 10 minutes before. Poor Meghan was holding her tiny, lifeless body in her arms and weeping.

The next several hours were terrible as one by one the visiting volunteers woke up and were greeted with the news that the little life that had captured our hearts was no longer with us on earth but had moved on to God's arms.

I had prayed so hard that God would grant us this miracle. That we would be able to save this life. I wanted it for her sake. I wanted it for the sake of the young girls who were giving up their summers to give love to others. Truth be told, I wanted it for my sake too. Selfishly I felt I was due some good news. Once again I've been humbled. His ways are not my ways (Isaiah 55:8). God had a plan for Jessie's life and he means all for good. Your prayers were answered in that we had several extra days of love and life with Jessie. She was happy. She was cared for. She was loved. And, she continues to experience love in the arms of her Heavenly Father.

Meghan wrote about Jessie on her blog. I leave you now with excerpts from that post.

The house is strangely empty without her, and so are my arms.  When her grandmother picked up her quiet little body for the last time, I watched part of my heart walk away with that tired old woman.  I'll never forget the sight of the grandmother and aunt walking into the distance down that dusty dirt road.

I've never loved anyone like that before. I fought so very hard to keep her.  When her tiny body was in my hands, there was nothing in the world more important. When she was in someone else's hands, I was itching to get her back. Every breath, every little squawk, every sigh was a precious gift.

The following are some excerpts pulled from my journal. I would have blogged, but the internet was down.

"And so the spot in my chest where my heart used to be stands aching and empty but for a few broken pieces and a desperate longing for what was. Shattered hope and strangled dreams. Anger. Desperate, unbridled, illogical anger, against a world where babies die from preventable disease...

She likes to be held. She likes to be cuddled close so she can feel your heart beat. She likes warm baths as long as she's in the water, but she shrieks like a banshee the moment she's taken out. Make sure she has both her bows-- the purple one, and the pink and white one. She can have her hands free now, free to explore and touch and learn.  She likes to ball her tiny little fists up on either side of the bottle while she eats.  And she doesn't like to wait when she's hungry or needs changed.  Now she can be clothed in brilliant white.  It will be beautiful on her. She'll look just like an angel.  She already did.  She really likes to be sang to. I should have sang to her more...

I love how she shrugs her shoulders and widens her mouth into that froggy old man smile. I love the feeling of her head in my hand and her curly hair like silk between my fingers, her long delicate toes and tiny fingernails, and those eyes! Those gorgeous, intelligent eyes! Deep as the ocean and with almost as much strength. Even the pockmark on her ear is precious, and the soft spot on her forehead, and the ridges all the way around her head, and the thin layer of soft black hair that velveted her entire body.  I remember the green birthmark on her shoulder and the fierce protectiveness I felt when I thought it was a bruise and that someone had hurt her. I love her perfect little freckled chin and her beautiful coffee-and-creme skin. I remember her fiery spirit. She fought every step of the way.  She snatched at the NG tube and clawed at the ARVs. If only she had fought the right things... I love how strong she can be when she has to, how a baby with no discernible muscles could suddenly push her entire body up to stand on her spindly legs in an effort to dodge the medicine headed towards her mouth. I even love her scars. They are perfect by connection. I love how tiny and delicate she was, how even newborn clothes swallowed her...

I woke up  and reached down to hold her firmly against my chest so I could sit up.  She wasn't there.  I want to scream...  I'm not sure if it would be worse to reflexively reach for her every time I wake up or turn around, or to stop reaching for her at all...

Once again, my memory fails me.  I feel these last precious memories slipping like vapor through my desperate clutching fingers.  Hanging her from a tree in a canvas bag at the falls to weigh her, dancing to "My Favorite Things," watching the stars-- even the hard memories, like the first feeding tube and stitch, reading the word "HIV" in her letter on the day she got here, and the persistant weight loss. I remember the very first time I saw her. Beatrice placed her in my arms and said, "Another little princess." That's when I fell completely and totally in love with her...
If love could keep a heart beating, she would still be here with us.  My little African princess. 

There's more of the same where that came from, but I'll spare you.  I promise I got to a much healthier place after a couple of days. 

If I seem a little mentally unstable right now, it's probably because I was. But you know what? If I could do it all over again, I would have loved her every bit as deeply. She deserved it. She was worth it.

Amen and amen.


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