'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 15th, 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.