Pages

Friday, March 24, 2017

School


Paloma starts school next week.  I started the special needs preschool placement process in May while still in Utah. I had visions of dropping Paloma off at school while I went off to yoga or sat in my car and read a book uninterrupted. We've had to learn many lessons the hard way the past few years, and it seems like navigating the public school system with a disabled child will be no different.  I'm no stranger to IEP meetings, as my oldest has a brain injury, but her needs have always been very minimal and for the most part, schools have been happy to accommodate her. 

I knew cannabis would be an issue.  When I called the head nurse for the whole district and asked her If I would be able to dose Paloma at school, she refused.  I knew better than to ask if the school nurse was willing to do it, but I thought because we live down the street from school I would just hop over during dose time or when she has a seizure to put the oil under her tongue like I've been doing for a couple of years now. The nurse stated she was concerned about losing federal funding since technically cannabis is illegal federally. A few months ago I probably would have called her out on that bullshit line, but hey in this current administration who knows what the angry little cracker will end up doing. 

I explained several times how THC has been almost miraculous for us, how before we got our hands on it we were having to use twice the recommended dose of Versed to stop a seizure and with that comes breathing issues and calling 911 on a monthly basis....I asked them if they would rather deal with me running over putting a drop of oil in her cheek and having the seizure stop with minimal side effects or the possibility of a large dose of benzodiazepines which will likely call for the  paramedics to be called and the spiral of awful behaviors that happens every time she gets it.  They didn't care.

  A few months ago I asked the preschool IEP coordinator if I could possibly go to school with Paloma for an hour or so, just to see how she does and if she has a seizure I could whisk her seizing body up and drive home before giving the oil. Oh no, she said. That would be out of the question.  So I agreed to homebound care. I felt defeated but I wasn't ready for a legal battle or trying to change the law here.

At our IEP meeting last week the preschool coordinator suggested we let Paloma come to school for an hour or so with me, you know, just to see how it goes......I agreed and felt sense of peace. Before I go off ordering the school to give us a permanent aide for her or trying to change the cannabis laws I need to see if she can handle a school setting. With the over excitement, heat (the school is in a trailer with only a swamp cooler) the germs, the outside recess, etc. I honestly don't know that she will be able to handle it. 

I was feeling pretty good in the meeting until I looked over and saw the preschool teacher's face.  She was clearly not happy about this placement and she made it known.  She's worried about being responsible for Paloma in case anything happens to her, she teaches 11 special need preschoolers by herself already and wasn't looking for one more and she's not thrilled about me being in the classroom with her. It’s a horrible feeling knowing your child’s education and wellbeing is in the hands of someone that views them as an inconvenience. 


I don't know the answer right now.  But Monday morning, I'm going to put Paloma's backpack on and we're going to walk over to the school and start this new journey.  



Thursday, March 2, 2017

A long overdue update...

I'm on break from school this week so I thought I would do an actual Dravet Syndrome update for anyone that actually reads this thing still.  I vividly remember trying to find any glimmer of hope that first year of seizures and how much Charlotte's Figi's story inspired me. I've been taking a much needed social media break and it's been very peaceful.  I briefly look at Instagram in the morning and have my  Facebook deactivated unless I need to ask something in one of my groups.  I realized I haven't done an actual update on Paloma since we moved.  (Please excuse my poor writing skills today. I've been writing papers for three months straight. I'm exhausted.) 


This past summer


We moved from Utah to New Mexico in June for several reasons but mostly because we needed access to legalized medical cannabis.  We fought to have it passed there but we were no match for the corrupt Mormon church coming out against the bill.  I don't miss Mormon land much to say the least.  

I immediately got Paloma's cannabis card when we arrived in Albuquerque. The law here on paper looks really great. I figured we'd easily stroll into any of the local dispensaries and get what we needed and all would be well with the world.  Of course it never quite works out like that.  After visiting nearly every dispensary between here and Santa Fe I realized no one knew anything about pediatric dosing and I was pretty much on my own (again). Armed with an empty bottle of high thc oil I'd been using to stop seizures, I asked around if anyone had anything similar or if they could make it for me.  Almost every place in town turned me away telling me they didn't know where to begin making this specific oil.  This thc oil by the way works to stop seizures 75% of the time.  On the rare occasion I do have to give nasal versed, I have to give a small amount. Before we left Utah we were up to 20 mgs and having to call 911 at least every other month.  The paramedics knew us all very well.  So I found one dispensary who agreed to make this thc oil for me from a specific strain called Blue Dream.  They first refused but a mutual cannabis friend who knows way more than I do on the subject called them on my behalf to tell them what I needed and how to make it.  It would be ready a week later they said.  Well two months later I finally got my hands on it and it was still in the sticky form (they didn't bother mixing it in MCT oil like I'd requested and they couldn't even tell me how many mg of thc was in it or how it was extracted. No lab reports in sight.  I bought it knowing I wouldn't be able to give it to her.  

We've tried several strains of local cbd without success and I finally gave up on getting what we needed here.  Six months ago I decided to try Haleigh's Hope which ships legally out of Colorado.  Paloma has responded well to it.  Her seizures are still occurring about once a week and sometimes once every two weeks but they are normally small seizures that stop on their own now.  I still use thc for rescue by placing a few drops in her cheek.  I have to get very creative in order to obtain the thc oil (don't ask)  

In most areas she is still on track developmentally. She needs help in maintaining attention so she will be starting speech therapy soon.  Our biggest obstacle right now is school.  We bought a house walking distance to a good school with a special needs preschool program.  I knew cannabis would be an issue, but I hoped since we are close I could walk over and give her cannabis when she has a seizure.  The school is refusing to let me dose her at school. They cannot understand why I will not consent to just using versed at school.  I've tried to present them with her progress these last few months. I have no doubt that her seizures are stopping on their own now because she has not been getting the versed at the same dose as before.  Versed makes her breathing get dangerously low, but they are worried about me running over and putting a few drops of oil in her cheek to stop a seizure?  We have an IEP meeting scheduled next week and honestly I don't know what will happen. I'm tired of fighting so part of me wants to just keep her home.  But I feel cheated and defeated.  She would love school and with the right circumstances, mainly a one on one aid, I think she would thrive.  

I have no regrets moving.  It's been somewhat lonely having to start over all again.  We still don't know a lot of people but it always takes me about a year to feel fully settled in a place. Paloma has improved so much that we almost feel normal again.  I go to the store and the park without fearing the worst most days.  Maybe it's the peace that comes with time too. I don't fear big seizures in public anymore.  I know if she has one I can pull out my legal cannabis and give it to her.  It's such a relief knowing I can medicate her without fear of being thrown in jail (for now anyway. Who knows what will happen with cannabis in the next four years, God help us.)   

A recent selfie

Tuesday, February 14, 2017

Happy Valentine's Day...

Sex Without Love by Sharon Olds
How do they do it, the ones who make love
without love? Beautiful as dancers,
gliding over each other like ice-skaters
over the ice, fingers hooked
inside each other's bodies, faces
red as steak, wine, wet as the
children at birth whose mothers are going to
give them away. How do they come to the
come to the come to the God come to the
still waters, and not love
the one who came there with them, light
rising slowly as steam off their joined
skin? These are the true religious,
the purists, the pros, the ones who will not
accept a false Messiah, love the
priest instead of the God. They do not
mistake the lover for their own pleasure,
they are like great runners: they know they are alone
with the road surface, the cold, the wind,
the fit of their shoes, their over-all cardio-
vascular health--just factors, like the partner
in the bed, and not the truth, which is the
single body alone in the universe
against its own best time.

Sunday, November 20, 2016

I believe...I don't believe

I write the following for anyone who has ever questioned their Christian faith...My faith started to crumble soon after it started.  I've written many times about my struggle with faith in the face of having a sick child.  Since we moved, I've visited several churches and have finally given up on finding one.  There is no shortage of liberal, progressive churches in the area. For the first time in my life, minus the year I lived in Austin, I'm surrounded by open minded thinking people.  I don't have to fear people flipping me off for my bumper stickers, or harassing me for believing the earth is in deep distress.

But back to my faith, nothing has felt right lately.  I'm big on feelings when deciding on a church.  I've always had a feeling that each church we've been a part of was the right one.  And we have been a part of many denominations, Presbyterian, non denominational, Pentecostal (that was fun.) Last week I went to Episcopalian church for no other reason than I wanted to sit with people who I knew would be equally as devastated by the election results as I was, and they were.  There was a community of heavy sighs as church began and the pastor spoke about how when so much hate has been let out of the bottle it's hard to be put back in.  But we in this faith community have to keep doing what we've always been called to do. Loving those who are in fear right now as well as those who we may not agree with.  The latter is much harder for me.  I don't get how someone who professes to be a follower of Christ could ever vote for such hate.  I get there was a lot of fear on their part, for the economy, for what they view as the declining Christian values in this country. This past year I just kept thinking, they won't fall for it. They'll see through it.


I think it's easier for me to say what I don't believe in than what I do at this point.  I don't believe the bible is meant to be taken literally or that it's infallible.  I don't believe that Muslims, Buddhist or my atheist parents are going to some place to burn for eternity. I don't for one second believe that I or any one else, even the most holy, have everything about God figured out. I picture God as a beautiful, glowing, big bosomed, black woman like Toni Morrison.  If Mormons can have their Kenny Loggins Jesus I can have mine too.  I believe in Jesus. This Jesus. I no longer feel comfortable calling myself a Christian and I think the average American Evangelical Christian would probably appreciate that.



Monday, October 3, 2016

At war with myself...


I've written about my drinking before. http://weavingthethreads.blogspot.com/2016/05/the-truth-is.html
 Many of my favorite writers are recovering alcoholics, so I'm no stranger to the struggle. They have great stories about how they knew it was time to get help.  For years I've read about Anne Lamont's journey with sobriety http://www.nytimes.com/1994/12/01/garden/at-home-with-anne-lamott-laughter-death-lollipops.html?pagewanted=all and just recently reread Mary Karr's Lit which details her divorce and recovery.

I had a close friend who was a recovering alcoholic and I asked her how she knew it was time to quit.  Her husband had caught her drinking in the bathroom out of a coffee mug before she was about to take the kids to school. I don't have a dramatic story but the truth is I've been drinking frequently for two years now.  In that time I've spent nearly every weekend drunk and the week after trying to recover only to do it again the following weekend.  This past Monday my husband was out and we had two beers left ( I know this because I hid them)  as soon as I got the kids to bed I downed the beers and then passed out. I woke up in the middle of the night so sick that the only thing that brought relief was to lay face down on the wood floor.  I knew right then I had to stop drinking.  I've never driven while drunk, I've never gotten so drunk I've thrown up or blacked out but I've been unable to stop the last year. I hide alcohol and I look forward to it all day long. I'm embarrassed to say I send the kids off to bed early so I can sink into my chair and pour glass after glass of wine.  I panic at the thought of being in social situations without drinking.

 I don't know whether I should use the term alcoholic but I know I'm walking a very fine line and I can't have a normal relationship with alcohol ever again. I tried telling my pastor last year I was worried about my drinking and she said she would be worried if I wasn't drinking, because how could anyone in my shoes handle everything I have to endure.  She meant well but I really wanted her to tell me she was worried too and that it's not healthy to want to be drunk all the time.


I made it all weekend without drinking.  I prayed, did yoga, drank soda (which I never do) and I tried to stay busy.  This is a small step I know but I'm looking forward to getting through the next few months clear headed and making peace with myself.

Sunday, August 28, 2016

Goodbye summer...and a poem from Sharon Olds

This summer has gotten away from me.  After sort of unexpectedly moving to another state, I feel like I've been to hell and back.  I've battled some serious depression and won (for now) I've battled alcoholism and lost (for now.) But fall, fall is now my favorite season and I look forward to the change.  I've been working on my finishing my degree in creative writing focusing on poetry. It's not the great school I hoped for, but it's better than nothing and I'm writing nearly everyday so I'm thankful for that.  Sharon Olds has become my poetry muse.  I found this poem recently. I've tried to write about seizures but it's still too raw for anything other than emotional gibberish to come out. But this pretty much sums it up.  




Prayer During A Time My Son Is Having Seizures

Finally I just leaned on the door-frame, a
woman without belief, praying
please don’t let anything happen to him.
Don’t let him stand there and his gold
jaw lock while he watches the burning
mountain falling slowly through his mind and
no word comes to him.
Don’t let him stand there like a tree with its
green branch lopped off and
falling slowly away, the tiny
amber cones already darkening,
don’t let him fall like the lip of a
cliff coming off, a heavy tuft
stuck with white berry blossoms
sliding down the raw bluff of his life,
don’t let him stand on the curb watching his
mind get hit by a blue car
over and over, there is nothing he can do about it.
Don’t hurt him, I cry out,
don’t take his thoughts away as a
kid will rip toys from another kids hands,
don’t go up to his small dazzling
brain in spangles on the high wire
and push it off. There is no net.
Don’t leave him in a wheelchair drooling into
cereal, not knowing the dark
holes are raisins. And yet if that’s the
only way I can have him, I want to
have him, to look deep into his face and
see just the avenues of light,
empy and spacious, to put on his bib
as I once did, and spoon brown sugar
into the river of his life.
I’ll change his dark radiant diapers, I’ll
scrape the blue molds that collects in the creases of his elbows,
I will sit with him in his room for the rest of my days,
I will have him on any terms.








Sunday, July 10, 2016

Ode to the Hotel Near the Children's Hospital


Related Poem Content Details

Praise the restless beds
Praise the beds that do not adjust
     that won't lift the head to feed
     or lower for shots
     or blood
     or raise to watch the tinny TV
Praise the hotel TV that won't quit
      its murmur & holler
Praise the room service
      that doesn't exist
      just the slow delivery to the front desk
      of cooling pizzas
      & brown bags leaky
      greasy & clear
Praise the vending machines
Praise the change
Praise the hot water
& the heat
       or the loud cool
       that helps the helpless sleep.

Praise the front desk
       who knows to wake
       Rm 120 when the hospital rings
Praise the silent phone
Praise the dark drawn
       by thick daytime curtains
       after long nights of waiting,
       awake.

Praise the waiting & then praise the nothing
       that's better than bad news
Praise the wakeup call
       at 6 am
Praise the sleeping in
Praise the card hung on the door
       like a whisper
       lips pressed silent
Praise the stranger's hands
       that change the sweat of sheets
Praise the checking out

Praise the going home
       to beds unmade
       for days
Beds that won't resurrect
       or rise
that lie there like a child should
        sleeping, tubeless

Praise this mess
         that can be left