Three Months

Wednesday, January 9, 2019

It's been three months since my husband of fifteen years told me he wanted to separate.  It wasn't a shock. We were both very unhappy and had been for most of the marriage.  We stayed together initially because I was pregnant and then because we were Christian and it was the Christian thing to do and then of course because of Paloma and her needs.  I should be relieved its over but I've spent the last three months wallowing in anger and self pity.  How could he jump ship and leave me, leave us, to manage this thing alone.  Not only did he decide to leave but by the next week he was already in a serious relationship with a woman in my social circle.

So I've been angry and when life feels out of control I furiously obsess over things. Like what the hell will be become of me?  I've read so many find the right career for you books, taken countless career and personality tests to try and narrow down what I might be good at or what my interests are. Honestly, I've forgotten a lot of what interests me in the years I've been a mother.  My new therapist challenged me to stop thinking about it for a week, just a week.  The truth is no book or career test is going to tell me what to do or what job will accommodate for having a child who needs to be picked up from school probably twice a week for seizures, who catches nearly every illness that crosses her path, who has constant appointments.  I wish there was an easy answer.  There isn't.

I decided a month ago I was going to apply for several MFA programs and I began preparing manuscripts to send off. I've since changed my mind because goddamn they are expensive and it won't solve my dilemma. So I have no plan. I don't know the course of my life other than taking care of my children. People keep asking me what I'm going to do. One friend asked if I was going to have to get on food stamps as if it was the ultimate failure.  I don't know the answer to much of anything these days.  I do know that this morning I helped Paloma through two really awful seizures.  I was thankful I was there to comfort her and that I wasn't having to juggle some stressful, crappy job and rushing to be near her.

I've been getting up to write every morning at 445.  I've joined a local writing group and I'm getting a steady flow of rejection letters every week.  Everything in me says to focus on writing but then there is still that voice that says you better figure out what you're going to do, you need to be independent so you don't have to rely on his money the rest of your life.  I tell that voice to shut up and that I'm working on. I don't have a plan yet but I'll figure it out.

I've got so many of these selfies on my phone. I can't bear to erase them.

New Beginnings

Friday, October 12, 2018

I'm a single mother.  I keep saying husband and catching myself mid word.  It feels strange, exciting and more painful than I imagined to be alone after being with the same person for nearly sixteen years.  I know it's for the best and long overdue but the loss is frightening, especially with children involved. I've spent the last month freaking out about what will become of me.  Who would hire me, I have a worthless degree, I'm not a people person, I have a hand tattoo and special needs child who needs near constant care. I'm basically unemployable.

 The past week I've calmed down and stopped freaking out. I feel the universe overwhelmingly telling me to relax, not to worry and to write.  So I've made writing a priority.  I'm focused on writing my story of caring for two special needs children, my loss of faith and now divorce and who knows where the story will lead.  It's a story that has been nudging me to be told for some time.  I never gave it the attention it needed.  I thought I'll get to that someday and brushed it aside to focus on my poems or catching up tv.  I said after Mad Men I'll start, then it was Boardwalk Empire, Breaking Bad and so on. 

My ex is out with his new lover.  He told me I can move on too.  I could be happy just like him.  For years I told him I didn't love him or want to be with him. I wanted to be alone.  Now I am alone and I'm  not going to squander my time watching other people's stories. It's time to tell my own.  

Yes it's scary, and what I'm writing right now is garbage and makes no sense, and there are plenty of smarter, better writers out there, and I should probably go back to school and get a respectable career that pays well, I'm ignoring all of it.  I'm no longer talking about writing, my ass is finally in the chair doing it.  

I listened to this podcast this week with Anne Lamott.  It was just what I needed to hear.  

Another rejected poem

Friday, August 10, 2018

Five months old

Your eyes don’t meet
 mine anymore, your gaze is  
held on something I cannot see 
not your toys or your hands 
as it should be. The ER doctor with a
pen in hand, cast a spell over you
with one word — phenobarbital, I 
don’t let myself Google it, he 
assures me it’s safe. Confused by the 
repulsive, red syrup I shove down your throat 
and why it’s not the milk you’re used to 
you spit it out and I replace it 
until you surrender and sit still
slumped over in your bouncy 
chair, not even realizing the sleight 
of hand performed over you.

Bad Poetry

Friday, July 27, 2018

No one wants to publish my poems.  I get it, they are mediocre and too personal.  You're not supposed to publish poems online, even in blogger format, if you want them to ever be published. But, I'm tired of waiting for that email that is somehow supposed to make me feel validated.  I'll take writing bad poetry, at least I'm writing. I've always just wanted to write.  

Before I became a mother at the age of twenty-one, I was an impressionable girl in love with my boss, who was a priest, and I now realize also very gay.  I was a chaplain's assistant and everyday we would take two hour lunch breaks where we would go to restaurants that served food I'd never heard of. We'd stroll antique stores and art museums.  Needless to say my co-workers all hated me.  

When he retired I was devastated.  I spent the entire day of his retirement in the bathroom stall crying.  The rumor in the chapel was that we were sleeping together. He was the only person who got me.  

At the time I had a pen pal who lived in Paris, so I asked her for a recommendation for a  fancy, intellectual good bye gift that would impress him.  She insisted I give him a copy of the book The Lover by Marguerite Duras.  

So the month after he retired I drove from Las Vegas to Denver to deliver some bird paintings he'd forgotten and I handed him the book.  His face blushed and he said thank you and shoved it into the glove box. He took me Tattered Cover bookstore where he bought me Steppenwolf by Hermann Hesse.  I promised to read it.  It was only years later that I read The Lover for myself and realized the subject matter was an intense love affair between an older man and a young woman.  Now I am eternally embarrassed and so I write bad poems to remember my time with him.  

For Father:

When you asked me to join you for last rites
I wasn’t sure what it was
but I knew I wanted to be close to you
when they turned the machines off 
it was only us three
her eyes hurriedly looking around the room
as if she wanted to see everything
 one last time
and when it was done and she lay there
all of her gone 
I thought something holy & philosophical 
might come out of your mouth
 but you only said, let’s have dinner 
over our palak paneer I did not 
think of breathing in her soul 
as it slowly left her body
I only thought of you.

Moms get shit done

Wednesday, July 18, 2018

I had another coffee date with my Republican representative and senator this week.  I lost hope after our last meeting when my senator said one of her biggest concerns about allowing students to have cannabis at school was high schoolers having greater access to marijuana. Then my representative, who btw sponsored the Epidiolex bill here last year, suggested we write a bill only allowing it on school grounds.  I thought we were done before we even started.

I invited a Democrat to join our little party this time in hopes that he could sway some of these tired, old conservative fears in the other direction. He said matter of factly, I don't see why there is any question about this issue.  Kids should be able to attend school with their medicine, end of story. Great, we're all on the same page. Then my senator brought up the high schoolers getting high issue again.  Really??

I sent each of them the Colorado bill to read through. They didn't. I get it, they are very busy, but the Colorado law only allows for non smokable forms of cannabis and it's locked in the nurses office.  So can we stop talking about teenagers increased ability to get high at school. It won't happen as a result of this law.  At the end of the meeting, by some miracle, I think we all agreed to draft a bill based on the Colorado bill.  You never know how things will turn out when politicians are involved.  It could be amended so much that it will be useless to me, but for now I'm hopeful.  In the fall I will have to speak in Santa Fe in front of the committee that will likely get the bill.  Let's hope I can morph myself into a well spoken woman before then.

Aside from trying to change the law my lawyer filed a due process against the local school district on the basis that the school is discriminating against Paloma, and has not provided a free or appropriate education under IDEA.  The school of course is calling for the hearing to be dismissed.  Our hearing date is in late August.

My Dravet mom friend Jana will be on The Today Show any day now. She is fighting for the same thing in California.  Her daughter and Paloma are the same age and Dravet has progressed similarly in them, so we've kept in close touch with treatments.  She introduced the idea of cannabis as a rescue medication to me, so I'm forever thankful to her.  I'm hoping her story will give this issue a much needed push into the national spotlight.

In the many cannabis Facebook groups I'm in, I see this same question come up frequently. A desperate parent  who has finally found something to help their kid and then they find out they can't take it to school. This is an issue that parents all over this country are going to have to take on and change.  The mother who helped change the law in Colorado has been a tremendous help to me and I'm hoping to do the same for someone else someday.  For now, I'm focused on fighting for every child in this state who relies on cannabis and has a right to attend school.  This is not a path I wanted to take. In fact I'd rather poke my own eyeballs out than dress up and have to pretend to be a normal mom and hobnob with politicians.   But, I  can see the path before me and I know which way to go and what I need to do to get this shit done.


Wednesday, May 30, 2018

To my great surprise, my Republican senator has stepped up to help me change the law to allow medical marijuana on school grounds.  At our  initial meeting I went through our history, how horrible Dravet Syndrome is, and what a relief it is that we've found something that stops seizures safely.   At the end of the meeting I was hopeful until she said something to the effect, just to be clear we are talking about CBD only here, THC has no place in schools.  My jaw dropped open and I thought oh shit, I was so close.  I didn't tell her then that CBD only would not help us. I thought it was probably pointless to try and change her mind.  I let a couple of weeks go by and I emailed her several articles about how cannabis works and told her all the families I know in the state are using CBD at a higher THC ratio than what she was comfortable with allowing on school grounds. I didn't hear back from her and thought it was a lost cause.  Then last week I got a text from her, saying she had watched the Dateline special featuring a child with Dravet syndrome and she had decided she was on board with whatever helps our kids.  Wow thanks Dateline.  She also said we are probably going to become best friends through this process. Yay!

My senator and lawyer both advised me to make sure our neurologist is aware of what's going on with trying to change the law and let her know she might need to lend her voice to the cause at some point during this process.  I've been dreading calling her.  This is a woman who reluctantly signs off on our MMJ card and scoffs when I turn down Onfi at every sing appointment.  She doesn't take my calls so I have to leave messages with her nurse.  I called the nurse and left a message saying that I needed our doctor to be willing to say Paloma has improved on cannabis. I'm not asking her to denounce pharmaceuticals or lie, only to look at our medical records and use her professional opinion to say Paloma has improved.  That's it.  I got a call back from the nurse yesterday who said unfortunately our doctor is uncomfortable saying anything on the subject.  The nurse said I needed to talk to her in person on any further discussion on the subject.  Since she doesn't speak with patients on the phone, I asked her if I could get a sooner appt. She obliged then added, "just so you know if you take a sooner appt that means you are taking it away from a child that really needs it."  I yelled into the phone, really do I not have enough guilt and reasons to not sleep at night already, I said some expletives, took the appt and hung up.

What good is this woman?  She signs off on our card every year but is unwilling to acknowledge in any way how drastically our lives have changed since we've started cannabis.  She's uncomfortable???

It might come down to her medical records having to speak for themselves.  I'm in the process of obtaining all of them from the various states we've left behind.

Today  I looked back through my half legible, tear stained seizure log from those first few years and counted twenty 911 calls and several  ER walk ins to stop seizures that would not stop with Valium alone. There were two life flights, one intubation and all the seizures ranged from five minutes to the longest being three hours.  Once in the ER there were massive doses of Ativan, loads of phenobarbital and keppra on top of the Valium. At one of the many hospitals, I forget which one, doctors and nurses gathered around Paloma in disbelief and the large amount of drugs they had just given her.  The days following our ER visits were always hell.  Helping a one, two, three year old come down off these drugs is one of the hardest things I've ever done.  She couldn't walk, would scream uncontrollably and there were days I seriously considered strapping her into a chair to keep her safe.  Her legs didn't work from all the drugs, and when she tried to walk as any toddler would do, she would topple over falling face first into the floor. Many days we drove around for hours trying to soothe her.  We were prisoners in our own house, afraid to leave, afraid of seizures in public, afraid of having to call 911 yet again.

Paloma's seizures now stop within minutes thanks to the cannabis I rub into her gums, afterwords she falls asleep and then wakes up fine and is ready to play. Most days she is out of the house enjoying life like a normal child.

This is why I won't stop fighting.  This is why I believe in the power of marijuana.  This is why I will never have faith in any neurologist ever again.

I think this picture sums up perfectly our lives before cannabis. In the ER once again, it had become just another day...

Change in coming...

Wednesday, May 2, 2018

I did an interview last week with our local newspaper about my fight with the school not allowing Paloma's cannabis.  I hate putting myself and especially my child in the spotlight.   I had to do it in Utah and it was horrendous.  In Utah, they tried to make me into their spokesperson and I am not well spoken.  I get nervous and forget what I'm supposed to say. When I had to go up before lawmakers in the Capitol to plead our case I totally blanked, and when they failed to pass our bill I took it personally. If only I could have given an eloquent speech like some of the other cannabis moms out there who have changed laws (I'm thinking Paige Figi)....

So I was reluctant to speak out here but I'm glad I did.  I knew it would force lawmakers to talk about it and I knew there were other parents out there like us who are facing the same thing.  I've been in contact with several people since the article came out, some in the cannabis industry, other parents, lawyers who have all stepped up and said they are here to help.  It's going to be a tough fight.  Ultimately, I would love to see a bill that allows school nurses to administer cannabis at school just like any other med.  We're going to need teachers and school nurses speaking out on our behalf to pass it.  It won't be easy.  New Mexico is not Colorado, I realize that.  I've told every lawmaker I've talked with that allowing minors to have access to medical marijuana and then not allowing a way for them to attend school with that medicine is cruel, unfair and a punishment they don't deserve.

Any time you put yourself you can't be too surprised at the criticism.  I knew it would come, but it stings just the same.  Just a few of the comments the story received online said that I was selfish, how dare I expect the school to give my kid a federally illegal substance.  One said something to the effect that kids like these shouldn't even be allowed in school, school isn't capable of handling severe kids. WTF?  One of my personal favorites by some dick who deleted it after I schooled his ass said, "I'm willing to bet seizure meds work just as good or better than cannabis for this kid."  Really?? Did you not read about what hell our life was before cannabis, the constant 911 calls, intubations, life flights, near death experiences.  I will never go back to the hell of benzos, not even if it means she can go to school.

Our next step is doing more media (kill me)  and lobbying (also kill me) and try and get it heard before the committee when the legislative session starts.

Wish me luck.

Here is the article if you care to read it.


Tuesday, April 24, 2018

My battle with the school system here in New Mexico to allow my daughter's cannabis on school grounds is never ending it seams.  I have resolved myself to the fact that homeschool is our best option at this point, but I'm still fighting because of the injustice of the situation.  When Paloma's neurologist suggested we try Epidiolex this summer when it becomes available, I reluctantly agreed because I thought it might be a way to change the school's no cannabis policy.  Like a lot of other parents in this community, I'm not a fan of Epidiolex. They lobbied hard here in NM last year to try and make CBD oil illegal.  At the time we were using Haleigh's Hope and if their bill had passed it would have been illegal to bring it into the state.  Thankfully, the bill failed but I've heard rumors they will be back.

I thought if I let the school know we would  be starting this new soon to be FDA approved drug they would certainly have to amend their cannabis policy.  I spoke with the health department at school yesterday and let them know we would be starting Epidiolex and asked them to change their policy to allow it on school grounds. I waited for a reply and held my breath.  The lady I've been going back and forth with for a year responded quickly and said, no need to change anything, if it's FDA approved we will treat it like any other medicine.

This was my response,

Just so I'm clear here, you're saying this new cannabis oil will be allowed on school grounds because of it's FDA approval but a slightly different oil that she takes to stop her seizures is still not allowed and I still need to be on campus with her at all times in case she has a seizure and then I need to pick up her seizing forty pound body, walk all the way across school grounds to the off campus parking lot before I can dose her with her medicine.

I use run on sentences when I'm pissed.

My next stop is going to the media. It won't do anything but maybe it can gather some support for the cause....

Four years after the diagnosis

Wednesday, April 11, 2018

I got an email from a new Dravet mother the other day. She thanked me for my blog and I thought she might say it helped her, then said it scared the hell out of her.  It wasn't my intention when I started writing this blog to scare anyone but mainly to document our journey and give a little glimmer of hope.  At the time, I found very few positive stories about Dravet Syndrome. So to that mom, I'm sorry I scared you, but those first few years were brutal and there's no way to sugar coat it. It scares me reading back on it. I honestly don't know how I survived.

Those first few years after Paloma was born, I was obsessed with Dravet Syndrome.  Obsessed with controlling seizures, obsessed with trying to cure Paloma.  Our world revolved around the next seizure.  There was very little sleep, what seemed like a monthly visit to the ER, life flights, intubations, endless rescue meds, doctors appointments, therapies, special diets.  It was hard to think of much else. Since our ability to use THC as a rescue medication things have turned around considerably.  I no longer fear seizures. They happen all the time.  They happen in the store, at school, when its too hot etc.  The other day Paloma had a seizure in Sprouts.  She was wearing her purple cape so I laid her out on the floor right in the middle of the store.  I gave her THC and waited for it to be over.  People asked if they could help and I said no I had it handled. Afterwords, I carried her in one arm and checked out my stuff with the other.  It sucked, but it wasn't a big deal.  It's just our normal life.

Those first few years I was so scared of going out of the house. Terrified of seizures out in public. Thankfully, those days are over. We've joined a homeschool co-op and we are out of the house most days now.

Our biggest issue now is trying to work on behavior.  We are starting speech and horse therapy soon and we are on the wait list for an autism screening which would open up a lot of resources.

So to those newly diagnosed who might be reading, it does get easier in some ways, or maybe you just get used to it and it becomes less heartbreaking.  Controlling the scary status seizures was our biggest turnaround.  It gave me a sense of security I hadn't had since before the seizures started.  I know that wherever we go I have a something that works quickly and won't maker her stop breathing or make her become addicted. Praise the lord for THC!

On Writing

Thursday, December 21, 2017

After I finished my writing degree over the summer, I started sending off the work I'd written in my classes.  The rejection letters have been slowly streaming in since then.  Yes, it means I'm trying but it also means my writing is not worthy of being published.  I sent off to big names as well as online journals that I thought would be a good fit.  My latest rejection letter said, with all the issues I wrote about it in my essay, it lost its focus.  Feels kinda like my life. I knew when I sent it off it wasn't ready, but I wanted to be rid of it.  It was dark, really dark and I wanted it out of my system. So I was relieved a little when it was rejected. I wouldn't have shared it with anyone.

I've been thinking about why I want to write in the first place.  I've always kept a journal and found pleasure in writing. The recent rejection letters have me wondering if maybe I should just keep my writing to myself and not seek outside approval.

Recently, when I wrote something about Paloma, I received a lot of comments that went something along the lines of, wow that's painful thanks for reminding me to appreciate my healthy kids etc.

I wanted to tell those people I didn't write it for them so they could feel better about their life.  I wrote it for myself, for other mothers living similar realities and not knowing how they're going to make it through another day.

My friend suggested I start writing fiction so I've started a few things but fiction is much harder than writing about my own life.  But I'm tired of writing about my life.  I'm still in the thick of it.  Maybe when I'm older and hopefully wiser I can offer something that isn't so dark it scares me.

under the influence

Thursday, November 16, 2017

Why don't you just use Versed at school, Paloma's neurologist says to me at her last appointment?  This after I've told her several times about Paloma's progress since moving to New Mexico.  I've told her how before we moved here we were using 20 plus mg of versed several times a month and averaging calling 911 every other month when the Versed didn't work. How the Versed caused aggression and caused her oxygen levels to drop lower than I safely felt comfortable caring for her at home.

I wanted to say, trust me lady, I wish THC wasn't the only thing that seems to stop her seizures safety with no side effects.  Instead, I just said, yeah I will think about it.  The truth is we've only had to call 911 once since we've lived here and that's when Paloma had a seizure at school and I had to drive home before administering THC (it has to be given very quickly to work.)  She is now going longer between seizures, she's for the most part able to enjoy a "normal" life now.  We are no longer scared to go anywhere for fear of having to call 911.  The neurologist never seems to be impressed by this improvement.

I've been going back and forth with the school for months.  First, they gave me the spiel about cannabis being federally illegal and therefore cannot be on school grounds because they could lose their federal funding.  Now they are giving me the school's drug-free policy.  The latest policy they've sent me says no student can be "under the influence of cannabis" on school grounds. The lawyer I've been talking to told me not to get in a back forth email with them but I emailed back and said something along the lines of Paloma being constantly "under the influence" of cannabis and needing more clarification on what this means for her. They are currently scrambling to give me an answer.

In the last year, I've talked with countless local cannabis activist, senators, other cannabis parents.  They all said they would love to help me fight this issue, but when push comes to shove no one is ever available to help me.

I reached out to a disability lawyer who has very little knowledge of cannabis laws.  A push to make the school pay for private school and a private nurse is an option but I think I've made up my mind to homeschool.

The lawyer said the school will clap and cheer when I tell them I'm homeschooling.  They don't want to deal with my kid. There's no easy answer.  The school nurse told me she doesn't understand why her medicine cant be locked up just like the other kid's life-saving medicine. I can only hope that someday this will not be an issue for our kids, that they wouldn't have to choose between taking a horrible drug that makes them stop breathing or homeschooling.