I’ve been remiss in posting, I know. Things have been busy, and hard, and hard to write about. I am fully immersed in the world of special needs parenting, with all the very hard sadnesses and all the surprising sunbeams of grace.

We have had insults from strangers and not-strangers – someone at a restaurant actually gave Gracie a dirty look the other day, for no apparent reason other than her special needs. Thankfully, Gracie didn’t notice, but I did. Then, someone very close to me told me a not-too-subtle story about special needs kids. That one hurt my heart; it’s one thing to have someone you don’t even know shoot a snarl at an oblivious child, but it’s quite another to have someone who knows her well criticize one of the things she’s worked hardest on.

And then there’s school… She goes to an amazing school for special needs kids. She has thrived there – she learned to walk because of the attention they gave her. But last Friday, her school told me her medical needs are too great for them to accommodate. We would have to set up a meeting with her doctor in order to have her continue there. This is the school we have praised up and down, we have been grateful to for over a year, we called a godsend. Godsend – ha! The Lord giveth and the Lord taketh away, I guess.

We had the school meeting today. It was hellacious, and my heart is heavy. I hope to find out tomorrow what they decide; it did not go well today and I don’t expect them to allow her to return to school. What am I going to tell her? How can I tell her that the school she loves so much won’t take her back? It’s like being stabbed in the back, like having your best friend walk away with a sneer. How will she take this unnecessary slight?

One little sunbeam, though, was her doctor. She shone through for us. She said exactly the right things, she was calm and collected, and she truly was there for us. This little kindness makes me want to collapse in gratitude – the hand reaching out to grab someone who is drowning is truly a nicety indeed.

I wish Grace could just be accepted. I wish she didn’t have to deal with this too, on top of all the medical stuff. She is Amazing Gracie – I wish everyone would just look past the potential lawsuit and see her for the beautiful, sweet, smart, loving, good girl she is.

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Mystery Diagnosis

Medicine has always intrigued me. As a child, I would pretend my play horses had elaborate injuries, then cast or splint them like a good doctor. When I was in high school, though, we dissected a cat in my A&P class, and the bleeding heart liberal in me could not dismiss the thought that someone loved that terrible, terrified cat. Any dreams of being a doctor screeched to a halt with the same immediacy as they did for that cat.

Medicine still interests me. I watch Discovery Health any chance I get, after the kids and hubby have gone to bed. The shows are too graphic for the children, and Chad doesn’t like to see people going through trauma. Although my heart aches for the parents of kids with medical problems, as Gracie’s mom I have a different perspective than I ever did before.

I pore over the “Mystery Diagnosis” type shows, hoping to see another kid with Grace’s strange constellation of symptoms. Occasionally, I will recognize the rare disorder by the symptoms – that happened with the episode about Lesch Nyhan Syndrome and the one on dysautonomia. It is scary to see dramatizations about children who have rare disorders that have been ruled out for Gracie; they always seem so terrible on TV.

The reality of what we live is also terrible, but we have good times, too. We have fun together. We sing, we laugh, we draw pictures and do crafts, we go on nature walks, we tell silly stories, we have a lot of fun. The dramatization about Gracie’s illness would surely be grim, but it wouldn’t tell the whole story. It’s true, her mystery disease is terrible so often; we worry so much for her. But she’s still a kid, a person, just like any other person. She is more than her illness, and I love her so much.

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My Girl

It’s so easy to get mired down by the worries that sometimes I forget to talk about all the awesome things that make Gracie amazing. She is such a gift. She has an understanding of the world that far exceeds her four short years. She is able to connect with people almost instantly, winning hearts wherever she goes. She is an old soul, a phrase that describes her perfectly and terrifies me because she might leave this world before I’m ready to let her go.

But back to the good stuff. For the past few months, Gracie has really been into making up songs. She sings in stream of consciousness – lyrics can include scenes from “Frozen,” talking about the dog entering the room, or made-up stories about anything and everything. She experiments with vocal modulation, first singing softly, then dramatically crescendoing to loud highlights, then backing off and singing more quietly again. She is a little superstar. I can just picture her throwing her arms out on stage, belting out the high notes like a blond Bette Midler.

Despite her natural musical abilities, Gracie does not want to be a diva. Grace has decided she wants to be a doctor. Although it’s hard to imagine her keeping up with the rigors of medicine, one thing Gracie has taught us is she is only limited by our expectations of her. Be it through medicine or music, some day Gracie will change the world.

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Arr, Matey

Today is National Talk Like a Pirate Day. Arr, ahoy, shiver me timbers! The kids went all out to celebrate this year – last Saturday, Jackson bit down hard on a Lego and knocked out one of his bottom teeth. Although there’s now an ugly gaping hole in his lower gum, I’m not too worried, because after all he’s almost 7 and it’s time for him to start losing teeth. It won’t be long before the new one comes in.

Gracie, never one to be outdone, decided that she wanted to lose a tooth too. At daycare Wednesday, she pulled out one of her bottom teeth. We’re not sure how she did it, but knowing her she listened carefully as we were talking about Jackson’s tooth and knew that biting hard on something could knock out a tooth. In the process of pulling out her tooth, she loosened the two on either side of the one that’s gone, so pretty soon she will have three missing teeth. Unlike her brother who will get his tooth back within months, she will have three missing teeth for two or three years.

It’s awful to see her smile. Every time I see the gaping hole in the bottom of her mouth, my stomach turns. The worst part of it, though, is that we thought she could feel her mouth. Turns out she can’t – she assured us that it didn’t hurt at all when she removed her tooth.

Either her condition is worsening or she has never been able to feel pain in her mouth. Although I believe her condition may be worsening, I am remembering how she was never bothered by teething and how she got a cut on her tongue once when she was about 1 1/2 and it didn’t bother her at all. We don’t really know whether she’s worsening or has always been this bad. Now, though, in addition to trying to keep her fingers from infection, we have mouth wounds to worry about too.

This kid is going to give me a heart attack.

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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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