Here we go again…

Well, $#!+. We got some bad news today.

About a month ago on a Friday, Gracie’s hand mysteriously became swollen. I had put her glove on at 10 am and the hand was fine. I took the glove off at 12:30 for her weekly OT session, and the hand was grossly swollen. Weird. But, you know, she had had a couple of spider bites in recent weeks/months that caused a huge amount of swelling and they went down in a day or two, so I didn’t rush her in for x-rays – I wanted to wait and see. Well, by Monday, the swelling was a little worse, so I took her to her pediatrician for x-rays. The radiologist who wrote the x-ray report thought there could have been a fracture in one of the hand bones, but when we went to ortho the next day, the orthopedist didn’t think it was a fracture – he thought it was just a channel in the bone. We went back a week later for repeat x-rays, and at that time he showed me where the bone looked fuzzy on the side, which he said could represent a healing fracture. Still, he wasn’t convinced, and sent us home with instructions to keep the hand in the removable cast his office had made after the surgery.

Flash forward to this past Sunday (my birthday). The swelling in Gracie’s hand hasn’t gone down this whole time. On Sunday, my birthday, Gracie’s finger – the one with the recent amputation – became red and HOT at the tip. Actually, her whole hand was hot, and of course swollen. Only the tip of that finger was red, but there was so much heat. Worried (very worried), I texted her pediatrician (Dr. A) to see if we should go to the ER then, wait until Monday and see Dr. A, or just keep our ortho appointment Tuesday (today). She never responded, so I spent the whole day agonizing over whether to take Grace to the ER or wait until the work week when we could see Dr. A, who knows her and knows how she can be very, very sick and look fine. Eventually, because it was my birthday, I decided to wait until Monday and see Dr. A.

Have I ever said how awesome Gracie’s pediatrician is? She is AWESOME. Awesomely awesome. I never have to spend time convincing her that it’s a big deal – she knows I wouldn’t contact her if it weren’t. She was concerned, and wanted to do full labs and x-rays. I talked her out of the x-rays, knowing that Dr. P the ortho would want to do them at his office. She did blood work, which was normal. Of course it was normal. Even when her finger was mushy, her blood work was normal – it’s another unique and mysterious thing about Grace.

So, today, Tuesday, we had the ortho appointment. We walked in the room for what was supposed to be our discharge follow-up from the surgery, and the nurse asked how things were going, so I told her – Grace’s hand is still swollen and her fingertip got mysteriously red and hot on Sunday. That was not the answer she was expecting! We did some x-rays, and the doctor came into the room. He had bad news. “The x-rays have changed since we did them last time. There are two dark areas on her metacarpals that were not there a month ago. It doesn’t look like a fracture. Could it represent an infection? I don’t know. I think the reasonable thing to do now is an MRI. She needs full sedation, right?” Yes, of course she does. She can’t sit still for five seconds, let alone an hour or so in an MRI machine.

Bummer.

It’s not that I didn’t know – I spent Sunday agonizing over whether to take her to the hospital immediately – but this is so scary. It seems so certain that it’s an infection, that the infection spread when her hand was so red and streaky last time. After all, the streaking went halfway up her forearm, and her whole hand was bright red. It wouldn’t surprise me at all if the infection had colonized the bones in her hand as well as through that finger.

But what does this mean? Will she have to have surgery again? Will she lose more of her finger – will she lose her whole hand?? Surely they wouldn’t take her hand; surely they would do a bone graft or something, right? Right?? And, we were supposed to go to my sister’s house for Thanksgiving to see her & her family and my parents, who will also be there. Will we still be able to go? Are we going to spend Thanksgiving in the hospital this year? God, I hope not. I desperately hope not. And, there’s the big question – will the antibiotics work? Please, God, let them work. Please let them work. Please please please let them work.

Thank God we were able to catch our breath a little after the debacle with the school. We’re walking into the fire again.

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Independence

Yesterday, Jackson asked a question that stopped me in my tracks. While in the car with me and Grace, he asked if Gracie would have to live with me forever. I froze — Grace did, too. I carefully chose my response. “Well, buddy, Grace is certainly welcome to live with me forever. I love her and she is always welcome with me.” Then, after a second, “You are always welcome to live with me, too, if you want to. But when you grow up if you want to live somewhere else, that’s okay too.”

Holy crap! What a question! That caught me off guard. I knew what he was really asking, and I think Grace did also. I hope that she will be able to be independent as an adult. It’s hard to say; there are people who are blind and do very well and there are people who don’t feel pain and do very well. The problem is, there really aren’t other people who are blind and don’t feel pain. It’s a very rare combination, and the ones that exist are blind by injury and not genetics.

When Grace was first diagnosed with retinitis pigmentosa, the thing I mourned most was the loss of her future independence. How would she ever find her injuries if she couldn’t see them? Especially since her sensation is so poor; she may not be able to feel subtle changes on her skin. Now, though, what I know is that Grace’s biggest strengths are her intelligence and determination. She does not like to be told “no.” She never has — even as a little baby, she would burst into tears if anyone scolded her or told her no. This turned out to be an asset for her — and I think it will help her find independence someday, too.

This morning when Grace first got up, I talked to her a little more about Jackson’s question. I told her that she could do anything she wanted when she grew up — she could live alone if she wanted — but she would always have a place in my home because she is my family and I love her.

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Breakups

I’ve said it before, but this whole thing with Gracie’s former school feels like a bad breakup. Although I’m glad we are no longer dealing with the drama, I’m still reeling from the trauma. I feel sad that it ended, remembering all the good times we had doing school events and with school staff. Much like how you lose your friendships with your ex’s siblings and friends in a breakup, I will miss the friends we made at the school and the good times we had.

I have been broken up with once before and it was awful. My ex and I were together for about 6 years. We dated for 4 years, then he proposed (finally!) and we were engaged for another 2. He left me about 7 months after the wedding; he said he just didn’t want what I wanted but really he crushed my Cinderella dreams. I had been naive, innocent, full of hope and expectations for the future. I was a Charlotte, for sure. When he left, my world fell apart. No more dreaming of babies, no more growing old together, no more happily ever after. And no more friendships with his mom and sister – I’m sure they barely remember me but we had some good times.

Something amazing came from that awful event, though. I met Chad, and things are better with him than they ever could have been with the ex. Of course, it’s not always perfect – like any couple, we have disagreements and are not always happy with each other. But we love each other ferociously. We will never give up our love for each other. We will never walk away from our future – or our present. We really do have a happily ever after… even if it’s a work in progress. And it’s a good thing, too, because raising Gracie has rocked us to our cores.

This whole business with the school is just another event in our crazy timeline with Grace. We barely catch our breath between traumatic events - infections, school stuff, dealing with her disabilities, trying to get people to accept her, etc. We rarely have a moment of peace. To say our lives are stressful is like saying the ocean is a little damp. But you know, good things have come of all this stress, too. Chad and I have become better parents and better spouses through all this. We have found some amazing helpers in our journey. We have gotten through each trauma, shaken maybe, but still alive, still going.

Someday, I hope we’ll look back on the drama with Gracie’s school and think, “Gee, I’m glad that happened, because look what good came out of it.” I never thought I’d say that about breaking up with the ex but I’m so happy to have the life I have now. Someday, maybe I’ll feel the same way about losing the school.

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Exercise

As I explain to friends and family my perspective about what happened with Gracie’s school, I am picking apart all my actions, wondering if I did the best thing or the right thing or the wrong thing. And so, as an exercise, I am going to try to figure out how this would have gone down with a typical kid at a typical school.

It’s actually impossible to begin, since this whole thing began with a bone infection that was beyond anyone’s control. And I never would have undergone the arduous task of collecting medical reports to try to explain my unique child’s extremely rare medical condition. And really, it wouldn’t be a special needs school anyway – maybe a private school, though. So say she was a student at a private school, and she got sick, and the school called me to say “Gee, we didn’t realize she was going to be getting sick. We can’t handle that kind of medical condition here – you will have to go to a public school where they will be forced to accommodate her.” See, even with my exercise, it’s impossible to change the facts enough to apply to a typical kid. So this is definitely something unique to special needs parenting.

I left out an important part. The school believes it is liable for getting your child sick. They want you to sign a waiver of liability, which you say is unnecessary because you’ll never sue them. You toss in “and besides, those things don’t stand up when there’s actual negligence” just to be snarky; probably shouldn’t have said that. The preschool director is clearly shocked, but you don’t really care – your only dealing so far with this woman is this one where she makes it clear that her son has severe needs that are nothing like your child’s but doesn’t manage to get across that she gives one flying fuck about anyone or anything except herself. You are shocked that they think they are liable for her bone infection (let’s ditch the exercise for a second) since it was not preventable. You try to assure this awful woman that you would never, ever, EVER sue the school, but she doesn’t want to listen. She only wants to tell you what she wants to say and doesn’t care what you have to say. It’s clear that her heart is three sizes too small.

So the preschool director, that awful lady, calls and says, “your kid can’t come back to school unless we have a meeting with her doctor to clarify her medical needs.” Actually, she says a lot of things, and they’re all terrible. But you want your kid to go to school there, so you set up the meeting. And you have the meeting. And it becomes clear in the meeting that the school doesn’t want your child there – that they feel she is a liability and they worry that something else will happen and you will sue them, even though you assure them repeatedly that you would never, ever, EVER do that. And that there is no legal basis for you to bring any suit anyway. The teachers and school officials repeatedly say that they “want her in class, BUT…” – those words were spoken repeatedly in that meeting. As customer service pros advise, never use the word BUT, because no one listens to what was said before the BUT – they only hear what came after. And, it’s true. “I want her in my class, BUT…” – that says to me “I don’t want her in my class.” BUT, I digress.

Anyway. There’s a terrible meeting, in which it becomes clear that your kid is not welcome at the school you thought she was thriving at. You leave the meeting heartbroken, feeling terrible that this school you thought so highly of thinks such terrible things about your child. But then, after the meeting, you get an email that says, “Your kid can come back, BUT…” After that BUT, it said “we don’t recommend it and here’s why” followed by a bulleted list of reasons why she shouldn’t go to school there. You want nothing more than to give the school a big fat finger at this point. Here is where I made another mistake – I sent her back. I should have realized that it was over. I DID realize it was over, but I was thinking that if we sent her back, maybe she would have a chance to say goodbye, to separate from the school in a better, more productive, less painful way. I was wrong; I should have collected her belongings right then and there and never looked back. This was one of my mistakes in the process.

BUT, to continue. You send your kid back to school anyway, and it’s weird and awkward. You are uncomfortable there, knowing how everyone feels about your child. They are uncomfortable, treating your kid like some monster, or a china doll maybe – a bull in a china doll suit? – and it’s just weird all around. After three days at this school, you get a call to come get your kid because “she isn’t listening and it’s been 10 minutes.” You know they aren’t calling anyone else to get their kids for not listening – in fact, you’ve seen staff members walking the hallways with kids for the duration of preschool because the kid won’t listen – but you are summoned because the school wants to villify your innocent child.

While you are on your way to pick up your kid, you call your husband, who is equally deflated. He says, “I knew this was gonna happen. They are just going to call us for every little thing now.” You are crying. You hang up, but then call back and ask if now’s the time to pull her out of school. Your husband agrees. For the rest of the drive, you mentally compose your letter of withdrawal to the school. Your heart is broken and you feel guilty for ever sending your child back to the school.

When you get to school, the front desk person says the preschool director wants to talk to you, but you refuse. You quickly move through the school, gathering all her belongings. You see your sweet child. She is gutted – crying, angry, sad, miserable that it’s come to this. She knows she’ll never go back to the school. She grabs you and doesn’t let go as you go around collecting her stuff. You listen to the teacher’s reasoning for calling you, which does sound like bad behavior but doesn’t sound like anything earth-shattering. Certainly not anything she hasn’t done before, and not as bad as some of the things she’s done. And, it sounds like typical 4-year-old behavior – or maybe not, because she’s so smart that it’s more advanced than a typical 4-year-old. The teacher offers to give her another chance the next time at school. You ask your daughter, “What do you think? Will there be another chance?” And she grabs you tightly and shakes her head no.

As soon as she’s buckled in the car seat, you can see the relief flood her little body. A new wave of guilt washes over you as you realize that she’s been stressed about going back to her school – it was just as hard for her to be there as it was for you to leave her there. You drive her home and talk about her behavior. After all, she did misbehave. She should understand that what she did was wrong and she shouldn’t act that way. At home, you write the email you’ve been composing to the school’s executive director. You make sure to include the word “discrimination” – they did not force any other child out of the school, even though she is not even close to the most involved kid there. You also make sure to let the ED know that you won’t be supporting the school financially anymore, and neither will your co-workers. You feel a little pang of conscience – or whatever that is when you get butterflies in your stomach, maybe a little premonition that you are doing something life-changing. But you hit Send.

Does this sound terrible? Does it sound like an angry, spur-of-the-moment response? Or does it sound like what anyone would do after going through what we have? I am struggling to do the right thing. I want to be a good person. I want to be a good parent. I don’t want to hurt anyone or anything. Maybe that’s what the butterflies were for – maybe it’s because my conscience knew that email would hurt its reader. The words were calculated to have an effect, but that effect wasn’t really meant to be harm – it was meant to be shame-on-you-ness. There’s probably a word for that.

The thing that hurts my heart the most is knowing that she was stressed out to be there. I would never have sent her back if I’d realized it was having that effect on her. Poor thing – it’s no wonder she was misbehaving. She knew that if her behavior wasn’t perfect she would be sent home, so she misbehaved. She was trying to get sent home. My heart breaks for her.

Anyway. I totally failed at my exercise – it’s impossible to imagine this happening with a typical kid, because everything that happened was a direct result of her unique and hard-to-manage medical condition. I think it’s pretty much the definition of discrimination to exclude her because of an inability to manage her medical needs, but maybe I’m wrong there. Maybe it’s just another hurdle in this special needs life. And probably one that we’ll encounter over and over again. It’s just really terrible to hear that your kid’s needs are too much to handle at a school for special needs kids.

This blog is the only public forum where I’m telling the true events. I do not want to bad-mouth this school that we loved; it still does good things for “regular” blind kids that aren’t so ridiculously smart or don’t lack feeling in their hands. Even though I think the school’s actions were reprehensible, I cannot wish them harm. But my heart is broken… It should never have gone down like this.

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Ballerina

Gracie had her first-ever ballet class today. She worked so hard. She tried to listen and follow directions and do everything the teacher asked of her. She had a helper – it’s the only way she could have done the class – but she did great! She got tired about 10 minutes before the end of the class, which isn’t surprising since she has to work so much harder to do the things that are natural for the other kids. Overall, though, I am hopeful for her.

As optimistic as this sounds, I have to admit that it was bittersweet to see her with the other girls. The others were running around the room, twirling and jumping and standing on tip-toes, and she needed a helper just to stand up. She will never be a prima ballerina. She will barely be able to keep up with the other kids in the class, even with a helper. But she can try – she has a chance to do something that would be impossible for her without help and an open-minded owner.

And then, something else happened today too. Something terrible. Grace was at her school for blind kids, and I got a phone call to pick her up because she was having bad behavior. The teacher told me on the phone that she was not listening and it had been 10 minutes, so I needed to come get her. By the time I got to school, I had decided that she would never return. I cleared out her cubby, grabbed her walker and her diapers, and took her home. For good.

The whole thing with her school was like a bad breakup. The school broke up with us, and we were trying to make it work until we could find a new apartment, but we just had to get out of there today – this instant – we should have done it from the beginning. I sent a nastygram to the executive director about discrimination (don’t piss off a mama bear who can write!), said goodbye to the people who care about us, and left. We will never go back. NEVER. You can’t go back to someone who’s broken up with you; it’s just not healthy. So we will turn away from this school I once called a Godsend and start forging a new path. We will find a new way. It’s a relief to be done with it, actually. The healing can begin.

Things are starting to look up.

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Hope

It’s been pretty depressing around here lately. I have been dragging along, putting on a good face for the outside world but generally feeling like I could cry at any time, feeling sad and tired, feeling like no one listens or understands. Feeling hopeless. But tonight, I had an epiphany.

A few different people have told me lately how important it is to have hope. Hope. What a funny thing to say to someone in our situation. We are worried our kid will die, worried that she will get kicked out of her school for special needs kids because her needs are too special, worried that she’s so terribly disabled that we’ll have a hard time getting her through school, and worst of all, worried that no one will ever see her amazing-ness because they’ll be too focused on the disability.

But still, various people have implored me to have hope. Hope. Trust. Faith. Belief that a higher power is at work. Maybe it’s Facebook God. But hope in what? How can I hope, when everything all around is beating us down?

Tonight, though, I found a little hope. Or rather, I found a way to hope by providing hope to others. I shared a video with a group of parents of kids who don’t feel pain, with a caption about how one year ago we did not think Gracie would ever walk unassisted, but now she can walk on uneven surfaces for long-ish distances and she’s even working on standing still. This girl for whom we had no hope defied the odds and learned the un-learnable. She really is Amazing Gracie.

So my lesson was this: I realized that, if I had been watching that video a year or two ago, if it had been posted by another mother, shamelessly bragging about her child’s hard-won accomplishments, I may have still doubted that Grace could ever walk alone, but maybe, just maybe, would have found a little hope that if this kid can do it, mine can too.

My little Amazing Gracie… she fills my heart with love and gladness and – dare I say it? – hope. <3

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Tides

Sometimes, it seems like life is beating us up from every direction. Sometimes, it feels like we’re barely keeping from drowning. Sometimes, it feels like we are drowning – like the waves keep crashing over us but we’re too beaten down to care.

Everything in life is transitory, even the bad times. Eventually, if you let the waves wash over you enough, they will stop coming and the shore will appear. We have had some pretty hellacious things happen lately, but it seems that the tide has turned. Gracie is off antibiotics – it’s been 10 days already and she seems fine, no sign of infection at all. She is going to be part of a research study and the doctors running the study seem confident they can find a cause for her lack of pain sensation. (I’m less optimistic about the outcome but still intrigued.) My parents bought me a new car – thanks, Mom & Dad! – and although that is very humbling in itself, I am loving the luxuries I’d never give myself. And, Gracie will be allowed to return to her special school that she loves so much.

For as long as it lasts, I will enjoy the calm and sunshine. I will catch my breath, rest up, and prepare for the next tide. For now, though, I am enjoying the peace.

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