Woe is Me

It’s almost midnight. I’m sitting here saying my prayers while crying my eyes out. There are so many people suffering in the world – so many unimaginable horrors, so many people with nothing, so many lost souls. Compared to so many people I have so many blessings, and yet I feel like my version of God has totally abandoned me.

One thing I’ve learned throughout my life is that if you wait quietly for someone to notice you, they won’t–no one ever looks at the mouse in the corner. They will walk past you, look through you, ignore you, not even notice your tears. I thought that God was supposed to be different – supposed to be the one that was there for you when no one even cared to look your way. But it seems that it’s true for God too; if I stay quietly in my corner, God will never turn to me. Even when I cry my eyes out, God doesn’t respond. I’m the nagging child who is spoiled and still asks for more. I am the worried wreck who has clothes, food, and shelter but still can’t relax. I am the mother who is watching her child worsen and can do nothing, and where is God?? Where is God now? Is God just sitting back, watching all this and saying “Whelp, can’t do anything about this now. She’ll just have to get through it on her own.”?

I have been worried for so long that Gracie will die before she’s an adult. It’s like the terrible reality that you know is there, you know is coming, but you just can’t accept it. It’s the scariest thing I can think of, and logic shows me again and again that it’s going to become reality. I worry so much about losing her – how could I ever go on without her? How could any of us? Why would God take such a beautiful amazing angel, or even threaten to?

Now, we’re trying to get the school district to give her an education – to accommodate her disabilities while still nurturing her amazing mind. For this, too, we have to fight. The school district first wanted to ignore her safety needs, now they are going to the other extreme and sending her to a school for profoundly disabled children. WHY does it have to be this hard? Why can’t they just be decent, compassionate people? Why can’t they just  do the right thing without having to fight? Why does God continue to make it so hard for her, for us?

So here I sit, crying, praying, and typing. I will continue to fight for sweet Gracie. I will continue to help others, continue to light small lights wherever I can, continue to do good deeds not for some vague promise of whatever heaven holds but because it’s the right thing to do to help others. And I silently pray that someone will look at me, someone will offer the type of help that we really need, someone will see this kind little mouse in the corner and offer me a crumb instead of a kick.

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Giving the Finger

Gracie gave her doctor the finger, literally and now figuratively as well. She had the tip of her finger amputated last Friday in order to rid the bone of infection. Today, we saw the wound for the first time. The flat end was crimped, as though someone had taken giant, somewhat dull scissors and cut off the fingertip.

Gracie told the doctor “it looks like poop.” I assured the doctor that she meant it in the most literal sense, since there was a black rim of dried blood and dead tissue at the top of the wound. Secretly, though, I wonder if she truly meant it figuratively–if she was letting the doctor know exactly what she thought about losing a finger.

She is too young to understand that there really wasn’t a choice; that if her body had fought the infection, if the antibiotics had been more effective, she may have been able to keep her finger. Instead, though, she gave the doctor the finger. I suppose, if I were a just-turned-four-year-old, I would want to give that doctor the finger, too.

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White is the New Orange is the New Black

Grace has committed a crime. She was convicted of being too sick to live in the outside world and her sentence is a week-long confinement in a medium-security facility. I was sentenced as the co-conspirator. We are forced to live in a small room with one bed, trapped like animals and fed terrible food. Our only hope is parole or a sentence reduction for good behavior.

Today, after four and a half days in the hospital, one overzealous nurse took us from regular population prison and put us in segregation. Gracie was put on infection precautions because the last time she was hospitalized it was for MRSA and hospital policy requires three clean visits before the precautions can be lifted. Even though we’ve been wandering the hallways, getting water and juice and coffee from the nourishment stations, and playing in the playroom for the past four days, the precautions were added today, so now that relative freedom is a thing of the past. We are confined to our room. We are not allowed to use the nourishment stations, the playroom, or any other common areas. We are trapped—trapped, trapped, trapped like animals.

We have presented our case for discharge to the highly credentialed parole board. If Gracie responds well to oral antibiotics, we could be released tomorrow. If she does not, we will remain in segregation until further notice, losing all track of time and losing all sanity. Our fate is in their hands.

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The One

This latest hospital adventure has prompted me to think scary and unpleasant thoughts about Gracie’s future. She is barely 4 – she just had a birthday – and antibiotics are failing her. Her latest wicked infection is responding to the medicine, but not well; after three days of IV antibiotics, there is improvement, but not much.

It gets scarier and scarier. Which one of these infections will be The One? The one she can’t fight, the one the antibiotics won’t combat. Will she always make it home from the hospital, or will we someday have to return without our beautiful angel? I don’t want to think these thoughts but they are there. They creep up, whispering their terrible insults from the dark corners of my mind like gossiping housewives.

This infection is not The One, but it is getting closer. I can hear its heavy breaths in the shadows, can smell the putrid horror of its formless darkness. I hold my girl tightly, hoping to infuse her with my strength, hoping I can will her illness away, hoping her little light can continue to chase away the demon.

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Raw

Raw is the finger wound, rubbed open to the bone.

Raw is the reality of another infection not responding to treatment.

Raw is the fear for her future.

Raw is the fear of her death.

Raw is the damp trail of tears.

Raw is my love for her – ferocious and unwavering.

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Night and Day

We saw Gracie’s usual infectious disease doctor yesterday to follow up from the frustrating appointment with the surgeon Tuesday. As usual, I left feeling like my questions had been answered and Gracie would get help. The doctor thought her finger looked worse than when she last saw it, ordered blood work to check infection markers, and referred us to an orthopedist who works with our usual ortho doc to evaluate for possible osteomyelitis. She also prescribed antibiotics but told me to wait to fill the prescription until we knew what direction we were going to take with the finger.

Once again, I’m impressed with the lesser-known children’s hospital in town. As usual, I left the appointment feeling like my concerns had been heard and addressed and that we would get help. This is a stark contrast to the experience we had Tuesday at the nationally-renowned hospital, and a stark contrast to most of the experiences we’ve had at that hospital.

I am still worried about my girl. She is getting infections that are more and more serious, and the antibiotics are less and less helpful. She is allergic to one of the major players in the antibiotic lineup and the other two that are comparable are not as effective for her. She is so young – it is scary to think that at the ripe old age of 3 she is having difficulty with antibiotic effectiveness. It’s scary that she perhaps has another bone infection and the antibiotics are not working as well. It’s scary to think that she keeps biting her fingers – ripping off fingernails, getting blood blisters, and opening wounds – and introducing mouth bacteria into fresh wounds. (She tore off another fingernail Tuesday night and it is a pretty ugly wound. She also has a new blood blister on a finger, a deep purple bruise of unknown origin under a fingernail, she tore off a thumbnail a couple weeks ago and it’s not growing back, and of course there’s the red, swollen finger we’ve been evaluating.)

Although there is much to worry about for the future, I am relieved that we have a good team of doctors on our side. It is the scary infection cloud’s silver lining.

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Frustration

Gracie had an appointment today with a new doctor, someone we’ve never met before. Ever since she had that MRSA infection in June, her middle finger has been deformed. The redness, streaking, heat, etc. is all resolved, but the tip of the finger is mega swollen and red. I’ve been concerned that the infection didn’t resolve, but her infectious disease doctor assured me that it did – her x-rays were normal and her blood work was normal, and if she had a bone infection one or both of those would be affected. But I was still concerned about the redness and swelling in the tip of that finger. I thought perhaps the fingernail was ingrown – it is growing in perpendicular to how it should be – so I asked her primary care doctor to look at it and perhaps remove the fingernail. Little did I know that fingernail removal is a very specialized procedure!

After many days calling specialists looking for someone to remove her fingernail, we were referred to pediatric surgery at the nationally-renowned children’s hospital in town. This is the hospital we switched from – the hospital where the infectious disease P.A. lied in her medical report. The doctor looked very professional in his online profile – the kind of board-certified physician with a long and distinguished CV – but I was nervous to meet him. Physicians with long and distinguished CVs tend to think they’ve seen every possible condition and do not attempt to understand Gracie and her unique issues.

At the appointment, the doctor examined the finger and said he thought it looked infected. He did not want to open up the finger, certainly didn’t want to open the nail bed, unless the possibility of osteomyelitis was ruled out by MRI. He offered to refer us to infectious disease at that hospital, but I declined, saying (perhaps foolishly) that I trusted her ID doc from the other hospital much more than the docs there. He was shocked; I could see the surprise behind his calm demeanor. I told him that she’d had x-rays and blood work two weeks before and it was normal. He told me I could come back if I got the films and he’d go from there. I left his office frustrated – it felt like a total waste of time. I don’t know what he could have given me other than what he did, but I felt like he gave us nothing. And now I’m second-guessing each minute detail, wondering if he believed that she doesn’t feel pain, wondering if he thought somehow I was causing all her symptoms.

The real sufferer, of course, is Miss Gracie. IS it infected? I have thought all along that it looked bad. Can I rely on the x-rays and blood work? Will she have to undergo sedation for an MRI? Is an MRI even necessary when the x-rays and blood work are normal? Is there another doctor out there who can help us, or do I just have to wait and watch until it gets worse and someone will do something?

The irony is that this is the reverse of the situation when the ID doc from the big hospital lied about me. At that time, Gracie’s index finger was swollen and red. We had gotten x-rays that showed osteomyelitis not only in the index finger but also in the thumb – a previously unaffected digit. The ID doc did not think Gracie needed IV antibiotics, and eventually she and I had what I thought was a sort of professional disagreement about the course of treatment – I thought Grace needed IV antibiotics, she thought the orals were sufficient, despite the worsening. I left her office thinking that, although we were both upset, it had gone okay. She wrote that I was yelling, insisting Grace be admitted and given IV meds despite the lack of clinical evidence requiring admission. I didn’t yell – anyone who knows me knows I’m not a yeller. I would never disrespect someone in authority by yelling at them. It hurt not only me, but Gracie – after all, these are her medical records, and it could prejudice doctors against her if they thought her mother would go ballistic on them.

But I digress. This time, I was the one with the clinical evidence, trying to convince a doctor that despite the way it looks there must not be any infection. I left his office so frustrated, so disheartened by the lack of help. I realized as I was driving home that I leave about 80% of all experiences at that hospital frustrated and needing help that no one will give. I leave the other hospital frustrated about 0% of the time. The doctors there talk to me, work with me, explain their reasoning to me. Even when I’m worried about the outcome, I leave knowing that we are a team, that Gracie is getting appropriate care and I can trust them.

So now we’re back to square one. I called Gracie’s ID doc and emailed her pediatrician. I’m sure one or both of them will want to examine her. And maybe good will come of it – maybe we’ll get someone to pay attention finally. But today was awful, and help has yet to come.

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