"How's Claire?"

I never know quite how to answer this question. And I get asked it a LOT. We're lucky we have so many people concerned about Claire's welfare but the reality of how Claire IS is kind of a bummer.

Claire has progressive, incurable brain disease. Couple key words there. "Progressive" means it's going to get worse, and "incurable" means there is no cure. While there is a treatment for Moyamoya disease - surgery - Claire currently isn't a candidate. The disease is progressing in Claire's middle cerebral artery at the moment, which isn't exactly accessible for surgery. There's really only one of two ways this could go: the disease could begin to progress outward, in which case surgery may eventually be a viable option; or it could progress inward, in which case it will be fatal.

That's it.

We had a pretty good run for a few months. Claire went the entire summer without having a single TIA (that we knew of). We've been told that she has them in her sleep so, the days she didn't wake up all wide-eyed and bushy-tailed as usual, it's possible she had one during the night. But she did not have any observed incidents for three months.

She had one four days ago though. A scary one. One that lasted longer than some of the previous TIAs and one that had me thinking maybe it was time to take that helicopter ride to the big hospital. She came out of it eventually, but she's still not quite back to full Claireness... and maybe she won't ever be.

Because... progressive. Incurable. Not a surgical candidate.

Claire is not going to "get better". In fact, she's going to get worse, and worse yet until hopefully she gets bad enough that surgery would be an option, but not bad enough that she dies. And while I don't spend a lot of time thinking about that - some days it just reaches up and smacks me in the face.

Claire does a wonderful job of living each day in the moment, and as much as possible I try to follow her lead. I don't like to think about the stark realities of what her future holds. 

~~~

How is Claire? Today she is smiling. She is happy. She is alive.

There is no God in this

The text came through at 10:10 this morning. One line: 

“The judge decided to send the kids back” 

I read the notification in disbelief. Clicked through to open the message itself and stared at it, dumbfounded. What. The. Fuck. 

Reunification. It’s a “goal” of the court and child protective services of Michigan. A lofty one. Perhaps it is a good one. The statistics the state provides say that 85% of the families exiting the reunification program are satisfied. I find this hard to believe. I wonder if anyone talked to the kids. Because it seems like no one cares what they have to say in this situation.  

The children the program is tasked with protecting have no voice. 

In two days, a family will be handing back the terribly damaged and traumatized child they have worked their asses off the put back together for the past two years to the very people who damaged and traumatized him, and we are to applaud the success and be satisfied. 

I can’t. I won’t. This is wrong. This happens, over and over again, and it’s WRONG. 

Biology does not a parent make and just because a child shares your DNA doesn’t mean you are qualified or capable of caring for that child. When a mother or father chooses to allow their new love interest to beat and torture their child, to look the other way as their child’s spirit and body is broken because they themselves are broken – their rights should be terminated. Period. There should be no reunification. There isn’t therapy that can fix what should be intrinsic to creating a child – the desire to protect that child with your life. Spiritually. Emotionally. Physically. 

To take this child away from the family who has worked tirelessly to glue the pieces back together to make this child whole again is utter and complete bullshit. It makes me physically ill. I want to scream. I want to throw things. I want to run and grab this child and run away. I think that’s why the courts demand the child be handed over so quickly – so the people with normal, protective instincts don’t have time to cobble together a coherent plan to steal the child away to safety. Because people with normal, protective instincts make the mistake of believing the system will work. 

It doesn’t. 

I am powerless. This family is powerless. This child is powerless. And it sickens me. Children have voices. Why won’t the system listen to them? And when this child ends his life when he is turned over to his abusers, as he has clearly and emotionally stated he would for the two years his foster family has had him, will the system listen to his voice from beyond the grave? Will they care? Or will they still say that statistics prove the majority are satisfied, and those 15 out of 100 children who aren’t really don’t matter. 

This child matters. Every child matters. He wants to be a trauma therapist when he grows up, so he can give the children who bear the same scars he does learn how to get beyond them. I fear he will never be given that chance.  

I, the agnostic, told the person who has loved him for the past two years of his life and did her best to put him back together again, that I would pray for them. I would find a way to send my thoughts to a God I’m not certain I believe in and beg for this child’s protection. Her response? 

“There is no God in this.” 

On that, we can agree.

Well - That Was Awkward

Let me preface this by saying - I am not humble bragging. Like I've said before, I write to get things out of my head. What happened on Saturday has been keeping me up nights and I figure once I get it out - it will go away. J

~~~

I don't know what made me think going back to college was a good idea, especially since I was in the midst of the biggest crisis I've ever experienced. But... I did.

Friends have seen (and laughed) at my various posts about my college experience ver. 2.0. If only I had worked this hard the first time around, I wouldn't be doing it now.

I still suck at Algebra, but discovered I'm not too shabby in Statistics. I still love all things Psychology (yes, I am diagnosing all of you in my head) and I am mad my Sociology professor reverse psychology'd me into accepting a B in his class by teasing me and saying I wouldn't be able to not get an A. Every time I see that grade it grates on me.

I've managed to strike the fear of God into anyone who has participated in a group project with me. But I bet they're thankful for the A's we've always gotten on them.

I've had high honors in every term except one (curse you Algebra!!) and still managed to make the honors list that term. One term I decided to set the bar to not only get all A's - but to have more than 100% in each class. I met the goal too. Yes, there is something wrong with me.

I think it has been tremendously valuable for my kids to see me working so hard in school. Unlike most parents who are done with their education before they have kids, mine are seeing me practice what I preach. Of course, since they are my children, they will ask what I got on an assignment or a test and if it's anything less than 100% they will tease me horribly.

Ahhhh, my little mini mes.

As proud as I am of my accomplishments, it still makes me incredibly uncomfortable to get outside recognition. When I post my grades on Facebook it's more so my friends who know me best can rag on me for being an overachiever than for people to tell me I'm doing great. I don't think I'm doing great - I think I'm working hard. It's weird, but in my head what I am doing isn't worthy of any special recognition.

Since I've gone back to college I've won several scholarships. It has been somewhat of an impersonal experience mostly. I applied for a bunch, was sent a letter that I won, had to write a thank you note, and the check was applied to my tuition. Easy peasy.

For one scholarship, I had to be interviewed. That was a little more intimidating but, at my age, I've been on enough job interviews that even that was a walk in the park.

A few weeks ago, I received an email from my professor with the subject line "Hey Loser" informing me I had been nominated for, and won, the outstanding student in education award. I didn't know there was such a thing, and was humbled and honored to have won... but I really focused more on the way in which my professor informed me. It makes me laugh every time I think about it.

Last week was my "award acceptance" week. I had a banquet on Thursday to accept my recognition award, and then on Saturday I had to go to another banquet to accept a scholarship I had been awarded. My teacher, advisor, mentor, and friend Professor Lisa Morley presented me with the recognition award. Her speech was hilarious, she embarrassed the heck out of me, but I was also stunned to hear the words of praise from three of my peers, as well as another professor, one I regularly butted heads with. I wasn't expecting that, and still can't quite get my head around it.

On Saturday we had to drive to Ferris to attend the awards banquet. It's not like I wanted to go - but if you don't, you don't get the scholarship. So if I have to waste most of a sunny Saturday to get a few grand, I'm going to do it.

This was a more formal affair than the ceremony I'd attended on Thursday. A few awards in it dawned on me - holy crap everyone is making thank you speeches. Oh hell no. I wasn't prepared for that. But... okay. I'm pretty good at public speaking. I can do this. I jotted down a few notes, and with growing anxiety, waited for it to be my turn.

When the time came, I walked onto the stage feeling fine. The presenter read the blurb about who provided the scholarship and what it was for. They gave a bit of background information on me, and then it was time to say my thank you.

"I am what they call a 'non-traditional' student, which is a polite way of saying old."

(audience laughs)

"All I ever wanted to do was be a mom..."

...and my voice cracked. I started to cry. Those who know me best know how much I hate to cry. I don't know where the tears came from but once they started I panicked and couldn't find a way to make them stop. I choked out a quick thank you, and practically ran off stage left. They made me stop for a photograph. Ugh.

I grabbed Peter and we left. Immediately. It was horrifying. Embarrassed doesn't begin to cover it. But what is bothering me most is that I didn't thank the people who gave me this scholarship, and the people who supported me to get this far. So this whole long-winded blog post is just so I can do this:

"I am what they call a 'non-traditional' student, which is a polite way of saying old. All I ever wanted to be was a mom. Then two and a half years ago my daughter was diagnosed with a serious disease and I realized I wanted to be an advocate for children with differing abilities within special education. Thank you to Dr. McCorriston's family for providing me with this opportunity. Thank you to the Ferris faculty and advisors for guiding me. And most especially thank you to my children and Peter for supporting me and what I really want to be when I grow up."

Just Breathe

'Cause you can't jump the track, we're like cars on a cable

And life's like an hourglass, glued to the table

No one can find the rewind button, girl.

So cradle your head in your hands

And breathe... just breathe.

      ~ Anna Nalick “Breathe (2AM)”

I always liked that song. There’s a line in it about getting all the words down on paper so they’re no longer inside of you, threatening the life they belong to. My words are my diary, screaming out loud. I’ve always written, was writing Young Author’s books in kindergarten. I write to tell stories sometimes, to memorialize other times, but mostly I just write to purge. I live in my head so much that sometimes I just need to get it all out so I can move on.

About a month ago, we got news that made me drop out of life for a while. Those words have been in my head, screaming, and it’s time to get them out. So this post is going to ramble, may not even make sense to most. Heck, I don’t know if anyone will even read it. Which is okay, it’s not for anyone but me.

Since Claire first had symptoms in August of 2012, my focus has been putting one foot in front of the other. I dealt with the immediate: getting her in front of the right doctors, getting tests, getting diagnosed, getting surgery, recovery... Although I would consider myself a realist more than an optimist or a pessimist, I just always focused on her getting fixed – getting better. I didn’t look to years in the future – I was dealing with the now.

In the months and years since Claire had surgery, I mostly keep the focus on the positive. How happy she is. How well she handles things. I don’t often go into the scarier parts of what’s happening in our lives because, honestly? No one really wants to know. If I told the kind-hearted person who inquired about Claire all the terrifying details of what we deal with day in and day out, it would just make both of us uncomfortable. So I skip it usually.

Occasionally I drop the bombshell on someone. When it’s been a long week. When Claire has had too many episodes. When I consider the what ifs of the future.  Then that poor person is shell-shocked and I feel guilty and I either retreat from the conversation entirely, or go back to focusing on the positive for everyone’s sake.  Except, sometimes it makes me mad, irrationally, that no one knows or understands how bad things truly are. I want everyone to know, but I don’t want to talk about it.

So here we are.

When Claire had her first TIA four months after surgery, no one was more surprised than me. I thought she was past the point of needing to worry once we got her home from surgery. But still, dealt with that first one, and the second, and the fifth, and the 15^th, and now she’s had 25 strokes or TIAs since August of 2012. I’m not dealing with it so well anymore.

Last month Claire had her appointment with her neurologist. All of those strokes, or maybe the surgery, or maybe the disease itself have finally caused noticeable damage in Claire. It shows in her scans, and it shows on her.

The doctor’s words are screaming in my head. “Transient ischemic attacks are just that – transient. They are the warning shot over the bow. Typically someone with one TIA would have a catastrophic event within a year of it. Her having so many – she’s on borrowed time.”  Words like “fatal” and “vegetative state” and “non-verbal” and ‘paralysis”. Screaming.

Claire’s neurosurgeon has added more restrictions to Claire’s life, and the neurologist wanted to reiterate one. When Claire was in choir class this year, during vocal exercises she had a TIA. When her neurosurgeon suggested she not participate in choir anymore, I said no. Her neurologist brought it up, and again I said, emphatically, “no.”  The doctor asked for an explanation and I gave him the following one. She is a 12 year old girl who just wants to be “normal”. She’s had so much taken away from her already, gets told no too much. She’s a 12 year old girl. So if she is going to die singing along with her favorite song – she was supposed to die. I am not taking that away from her.

I would rather her spend six months, a year, two years -- whatever -- living her life rather than living in a bubble. When she was told, at age nine, that she wouldn’t ever be able to skydive she was devastated. I didn’t quite understand because skydiving doesn’t seem to be on the average kid’s bucket list but okay. Skydiving. In March I took her indoor skydiving (we got approval from her neurosurgeon) so she could have that experience.  Because I want her to pack in as much living as she can into whatever time she has and if that means giving her that dream, I’m going to do my best to give it to her.

On the way to the neurologist’s appointment, Claire and I spoke about her feelings about death and heaven. On the way home, I couldn’t say much of anything. My words wouldn’t come. They swam in my head, unable to find focus or direction. Unable to find purpose.

In the days before Claire’s surgery, we had appointments with a lot of doctors. One of them, I can’t even remember which one, informed me that it’s a good idea to “think about making arrangements” just in case. They didn’t go into detail and I didn’t ask, because I knew what they meant. No one wanted to discuss these “arrangements” with me because no one wanted to consider what that would mean. I did. Because making those arrangements, even in a hypothetical, was something I could do. This entire situation is out of my control – out of anyone’s really – and having something I could do gave me a sense of control. So I asked Claire what she would want.

Consider, for a moment, being tasked with asking your nine year old daughter what she would want for her funeral. Look into your child’s eyes and imagine wanting to do this, because it would be the last chance you would have to give your child what they asked for. Your last chance to grant them their wish. Imagine that.

Claire didn’t know at first because... what nine year old would? But we talked about it and she considered it and finally this is what she said. She wants it at the outlet – because she loves it there. She loves the point where the river flows out and the lake flows in. She thinks the waves there are the best. That's the spot. I think Claire pictures 100s of people being there. My girl – she loves herself a party. And there would be food and swimming and fun. Then, when it got dark, everyone would light a Chinese lantern and send it into the sky to say goodbye to her.

When she described this to me I thought it sounded perfectly Claire. Just knowing this is what she wanted, and that I could give that to her – I made the arrangements in my head and it gave me a sense of peace. She had her surgery, came out like a champ, and we’ve been moving forward ever since.

The day before Claire’s latest MRI, a member of a local group notified me Claire had been unanimously nominated to be the recipient of a benefit. I had no idea we were even being considered until I got the message. I was honored, touched, and grateful. It made me cry.  When I accepted, my first thought was how I could put the money away to fund Claire’s funeral in case the worst happened.  I hadn’t thought about the arrangements for months before that.

The next day I was sitting in the waiting room of the hospital, watching a movie that only a second before had me giggling, and suddenly I am crying and can’t breathe.  See - once they took her back to the MRI room, I sat in the waiting room watching the second half of Tangled. I haven’t seen that one since we’re more than a few years past me sitting with my kids snuggling, watching a Disney movie. I was entertained. The story line was cute, and I liked the horse. I was just trying to not think about Claire’s test and what all this means. Then the part in the movie with the lanterns happened and I had a full-blown panic attack.

I don’t know if Claire got the idea of the lanterns over the water from Tangled.  If she did and doesn’t realize it or if she thinks it was all her own idea.  I don’t know and I will never know because I will never ask her, but watching on screen what my daughter had described to me 28 months before sent me into a tailspin.

All the fears and doubts and worst case scenarios I’ve kept locked in my head have come out of the deep dark spaces of my brain and flooded me. Things like, my biggest fear isn’t Claire dying. My biggest fear is her having a catastrophic stroke which leaves her in a persistent vegetative state. Which is a very real possibility. My fear is how will Quinn survive it if he loses his sister? How will I?

And beneath all this, lurking like a poisonous spider, is Peter’s ex-wife and what will she do to make an already unbearable situation worse. Because throughout all of the hell that has been the last two years, there she has been. Lying. Scheming. Manipulating. Gossiping. Some highlights:

She trolled Claire’s Facebook page claiming there is nothing wrong with Claire.

She attempted to subpoena Claire’s records from DHS.

She attempted to subpoena information about Claire’s fundraisers.

And that's just the crap she's done to CLAIRE - a 12-year-old child - in her relentless vendetta.  Tack on the crap she's pulled on Quinn and me and this list goes on and on. This is a person who is envious of the “attention” Claire, and ultimately I, receive because Claire has incurable brain disease. When I was told about Claire’s benefit, my second thought was what kind of stupidity would follow from this monster.  I can just about imagine the phone calls and emails and messages and gossiping that has occurred since the announcement came out.  And that’s just one more thing I cannot deal with anymore. I just can’t. Instead of being happy with her life, and her health, and her TWO HEALTHY CHILDREN, she's insinuating herself into the medical crisis with my child at every possible turn. I shouldn't have to spend one second worrying about what she's going to do next, or imagining what she's capable of.  I've had it with her ignorance and hatred and conscienceless bullshit too.  After awhile the high road starts to feel like a doormat and I've stayed silent on the topic of this thing long enough. What a horrible, miserable, disgusting excuse for a human being.

My life is trying to further my education so I can act as an advocate for families in situations like mine. It's teaching parents how to navigate the special education world so they can learn how to advocate for themselves. It's being a member of the governor's council on developmental disabilities so I can be a voice for those in situations like mine. It's parenting two children to the best of my ability. And it's trying to keep my daughter alive.

In between school, and job, I have decisions to make like, is it time to apply for social security disability for Claire? I've been told for over a year by her caseworker, and therapist, and doctors that it is. But I just can't seem to check that first box. The one that says, "The child’s condition(s) must have been disabling, or be expected to be disabling, for at least 12 months; or the condition(s) must be expected to result in death."

I'm not ready to say she might die, despite being told that she could. I just can't click that box.

It's avoiding the phone calls from the Make A Wish foundation. They sent me the application back in February. They call, wanting to know when I'm going to fill it out.  The envelope remains on my desk, unopened. It's not that Claire doesn't have a wish - she does. She wants to go to Le Cordon Bleu Paris and be a Cordon Bleu chef for a day. But, again, I can't bring myself to click the box that says my child is dying.

I've hit the wall. My ability to soldier on has faltered, and I need to check out for a while. So that's what I'm doing. This is my explanation and my purge. This is my diary, screaming out loud. As a friend advised me today, I need to close my door. Only deal with what I can, and let the rest slide for a while. We appreciate all the thoughts, and prayers, and well wishes. We do. I just need to take a break for a while, close the door, and focus on just breathing.

Conversations with Claire

Most of my meaningful conversations with my children occur when we are driving from one place to another. It could be as short as a drive home from school, or as long as a trip to the hospital(s). No topic is off limits. No question is avoided. Whatever they ask, I answer, to the best of my ability.

We have talked about sex, and drug addiction, and child abuse, and domestic violence, and masturbation, and first kisses. We discuss science, music, art, theater, literature. If Quinn is in the car, we talk about video games. A lot.

Yesterday, Claire and I set off just before daybreak for another appointment at another hospital. We received less than 24 hours notice, and because of that, Claire was anxious. She has reached the point of understanding urgent things in her life are usually not good things.

We talked about a bunch of different topics for the first part of the trip. She wanted to know why Kurt Cobain killed himself. She's recently discovered Nirvana and wanted to know what happened to him. This led to a long discussion on creativity, and drug addiction; heroin, and detox. She still couldn't understand why and the best I could offer her was, he probably just wanted to stop hurting.

Not long after sunrise, Claire quietly asked me if she was going to die.

Before I tell you, dear Reader, how I answered that question, allow me to back up for just a moment.

When it comes to issues of faith, my friends run the spectrum. I have friends who are strong-believers and can quote Scripture on demand. I have friends who are, as they term themselves, raging atheists. I have friends who are somewhere between all of those points. I feel lucky to have friends who cover the spectrum. I respect and appreciate all of their viewpoints.

When it comes to faith in our household, we cover a spectrum too. Quinn is a non-believer. He is just too analytical to accept there's a supreme being who created and is controlling the universe. I accept that position, but have taught him to respect those who do believe, and he does.

I am a true agnostic. I do not believe nor do I disbelieve. I accept that I do not know.

Claire has always been my believer. She embraced everything she was taught in Catholic school. She took it to heart. I accept her beliefs, but have taught her that not everyone shares them and she understands.

When my normally bubbly, enthusiastic, happy-go-lucky child quietly asked me if she was going to die, I blurted out the first thing that came into my head, "You are. Everyone does."

I asked her if she believed in heaven. She said she didn't know in a way that showed she wanted to avoid the question. I told her there was no right or wrong way, however she felt was right. I told her I was just curious.

In between breaths, I will tell you, I wanted to give her the fairytale of heaven, if that's what she needed, because, she's my baby. She's my baby and she's scared and panicky and anxious and if the thought of a heaven I don't know if I believe in or understand gave her one millisecond of peace, I wanted to give that to her.

She got quiet in a way she never is and thought deeply in a way she never does and said, "I don't believe in heaven, but I do believe we all have a final resting place that is peaceful."

I think that's the most perfect thing I've ever heard. It feels right to her, so it feels right to me. I grabbed her hand, kissed it and said, "That’s probably the most brilliant thing anyone has ever said ever and you're 12. I love you."

She smiled, and I smiled. We turned our faces to the dawn and drove on.

Skinny Bitch... Please

I haven't been writing much lately because, well. I've been busy. Job, kids, 22 credit hours of higher education - I don't have time. But I read this today, and I was compelled to write. Absolutely compelled.

Being Thin Didn't Make Me Happy, But Being "Fat" Does

I love this. LOVE it.

I was thin my whole life. Like, 89 lbs. when I graduated from high school thin. Like, back down to a size 6 at my 6-week postnatal appointment with my son thin. Thin to the point that I thought the bones sticking out through my skin was pretty. Hair falling out was normal. Bruises everywhere were just a fact of life.

And then, after the horror of Claire's pregnancy and delivery, after postpartum depression and anti-depressant meds, after a psychological breakdown *because* of those meds, after divorce, and moving, and death, and losing my job, and having my kid diagnosed with an incurable and critical illness... I'm fat.

Oh, I say chubby, but let's face facts: I'm fat. Fat to the point that I had someone say, TO MY FACE, "What happened to you? You got FAT!" (Well, you still have no chin, and I see you're still the same dickhead you were in high school, Mr. S.)

But you know what? I'm happier now. I don't obsess about how many days I can go without food. I don't randomly pass out. 

I eat homemade mac and cheese and I *enjoy* it. And my man thinks I'm sexy as hell. To the point I can feel him watching my butt as I walk down the aisles at the grocery store. To the point he can't keep his hands off of me. TMI but there it is.

To the point I'm having boudoir portraits done before my 45th birthday next month. How's that for TMI? And my man? He can't. freaking. wait.

So yeah. That article? I so totally get it. I embrace it. I celebrate it. Good for her. Good for me. Good for all of the chubby girls in yoga pants who are GORGEOUS.  I'm fat and happy. Deal with it.