Perfer et Obdura, Dolor Hic Tibi Proderit Olim

"Be patient and tough; someday this pain will be useful to you." - Ovid


Randy gave me that. This brilliant artist I know who always seems to catch me at the right time with something profound.


One day, when this is all over I really hope I can look back and feel that way. I hope Ovid is right. One day when life is something closer to what I once remember - I hope with all my heart that this will be the case.


Maybe I am supposed to be an advocate for this disease? Maybe I am supposed to bring awareness?
That is a calling I can't even consider right now.


I don't think past the moment I am in anymore. I can't. As they say "the future is too uncertain for plans, and dreams have a way of falling down midflight." I don't dare anymore. It isn't worth the energy. If I did I would realize I should be Xmas shopping, and fretting over what color my tree is. Posting silly anecdotes on Facebook and worrying about who and what I will get people. And I would miss it. It would haunt me and I would feel even worse than I already do. I think it is a form of self preservation not being able to think ahead that much.


Usually I am asking Jason to be easy on my pocket this time of year. Of all the kids his taste are the most high class and champagne. His way of easing my pocket this year was to ask me for Invisalign; after I just finished my layaway plan over 6 years for his $3500 braces. Instead, of Invisalign I am pining over admission processes for "the best" rehabilitation centers for Jason.
As usual Jason is the most expensive child I have.


The good news is all the Ivy League rehabilitation centers are attainable. God has provided a way for Jason to get into the best facilities. The blessings are coming and they come in ways you do not necessarily expect but when the green lights start it is a pretty amazing feeling. Nothing makes me "happy" these days. But I am grateful. I am always humbly on my knees grateful for every gift I receive for Jason and when the news is good I will always share. I was worried, so worried and like always a prayer and positive thinking has paved the way for my exact request.


The bad news is, facilities can pick and choose who they want and it is based on availability. Praying for the best, praying for a good one and for God to make a way where there seems no way. His medical report card weighs heavily on where he goes. We need the best brain trauma center possible to curate my little nugget until he is back to himself. And he will be back to himself.


I have been selfless in this search. Only considering the best for him, no matter how far. In turn playing mental guerilla warfare with myself. There are places blocks from my house he is eligible for. But they aren't the best. They are just there. Like everyone we want the best for our children. Jason needs a place with intensive state of the art therapy, not a place with a bed who just got their paperwork. My mind will wander with insane imagery if I let it. Provoking me to the point of tears of all the "what-ifs" that could unrealistically happen at a place I cannot get to in 10 minutes. I am my own worse enemy, I know this. Like my own parent I tamp down the crazy and instruct the social worker to apply.


It is so hard to accept that this is life right now. I have cried so many times today for good reasons and some bad. The bad is mostly fear. How the hell am I going to manage a 2 hour drive away from Jason? Again, I can't think past the moment. Staying with him 24/7 in rehab is not really realistic - no matter how crazily I would attempt it. Again - I just can't think past the moment. The tears fall and the emotions rise up like a volcano, bringing on that maldita shake I just can't get rid of.


I have to do what is best for Jason. I have to figure out how to live through this. I have to figure out life now and how to get past this moment.


I will fry that fish tomorrow - when I fight with them again about how "fit' he is to leave the step-down unit.


I can't think past this moment.

Going Viral

To date this blog has amassed 22k hits since its inception November 14th. The ALS challenge was an admiral intention And so many engaged in it making the overhead of the organization rich. Here is a young man who just graduated high school and was a freshman in college trying to do the right thing and earn a college degree, making his family proud struck down by this debilitating disease. He has been robbed of 6 weeks of his life that he will never get back, He has a little brother and sister that ask for him constantly not understanding why he doesn't come home. And he has a mom, a mom who has cried her eyes out everyday and suffered a nervous breakdown because of this disease. Don't let this disease take any more from him and his family. This is an admirable cause where every dollar will go to Jason, his medical bills, rehab  and battle with this disease.

Many have asked how you can help and Now there is a way. It is difficult to ask because It is the holidays and we all work hard for what we have but the truth is Jason's recovery process is accelerated by the type of facility he gets into. A good rehab facility gives great therapy and gets him moving along faster. A nursing home tries their best but does not do the "extra" a great facility with state of the art technology could offer.


I am asking each of you to help me out with a much smaller task than ALS.. Help me get Jason into a good rehab facility by contributing to Jason's Gofundme page and or forwarding this on social media. Many of you have contributed and i thank you because your kindness is sitting in a pool waiting to pay a medical facility for him. Unfortunately they are truly expensive and we need more. The push of putting this blog and this Gofundme me page on your Facebook timeline or Twitter feed is just a few swipes of a thumb and cost nothing. It's easy to pass a joke or a viral
Video could you please consider helping me campaign for my son? It truly will help Jason  and future victims of this disease by drawing awareness to this cause and possibly rounding up people to pledge for him.
Please.
My boy needs help and I need to hear him speak to me again soon. Please give him a chance to win against all odds by helping him get into a facility that will help him excel. Any kindness no matter how small is appreciated more than you know. Truly more than you know.

As always a prayer is an amazing gift and the most expensive thing I could truly ask for. If you would take a moment of your life to address the powers that be and ask for my son's  betterment I could not dare ask for much else.

God always finds a way.

Thank you.

Que Sera Sera

Jessie helped me tonight. A young and pretty Asian nurse with a soft voice who thanked me every time I helped her do anything for Jason. It was a calm night today. Vitals were stable, with the occasional low blood pressure that makes my heart sink. Pressure too high causes pressure in his brain which is no good for the swelling. Pressure too low doesn't let blood fuse to the brain properly -still no good. It is a medical high wire act and I am the only spectator watching with baited breath. Jason's brain is my ace in the hole. It remains unscathed. It's the massive hard drive that contains my Jason. My baby Jason. No matter how ugly things get right now my beautiful boy is in there and he will show up when this is over. He might need physical therapy for being in bed so long, and maybe a few months of his life will seem a blur. But once this fog lifts he will listen to Drake and want Chipotle and want to argue about how he is the only one of his 18 year old friends with a curfew. 

It's so hard to see him like this. So many have asked to see him. 

My answer remains the same, not now, not yet. He is in no condition for visitors. 

You have no real Idea of what you are asking for. This imagery haunts you. It gets in your brain like a parasite and every time you close your eyes it's hard to unsee it. While you don't understand and maybe never will I protect you from it. From seeing this Jason that no one knows. I see him every day and I remind myself that My Jason is in there and one of these days he is going to look at me and call me mom and this will be over. It has to end right? I want to cry and scream and beg for this to stop already. 6 weeks of torture is a long time. 6 weeks of hitting me at my jugular as I watch my baby fight for his life, endure complications and become something out of this world. But it only just started. I could have many more months even years with this. My head needs to continue its lap to get around that concept. His recovery will be long. That's the one constant among all the doctors. They can't agree on how to treat him but they all agree no matter what this will take a LONG TIME. 

He was just reaching out in the dark at nothing. I had to talk to him to bring his arms down. My words muffled through my mask. I feel bad that if he has a clear moment what kind of imagery does he see. His mom wearing a mask? Talking to him With muffled speech? Imagine yourself waking up like that. Not knowing where you are and your mom wearing a mask like you are in quarantine? Things like This is what I think about. Things like this are what bother me. When I talk to him he seems to relax, tonight. He is now turning in the directions of the voices that speak to him. Not looking at the person directly but in their direction. He calms down only with me. When I touch him gently, tell him I love him and he will be okay. I guess that is my sign. The sign that he is in there and I was asking for. He is obedient to me even in this state. 

Nightcaps At the Hospital

This unit is for things that are neurological or psychiatric, so that patients here have varying degrees of psychosis. Jason is unique. He is sort of the quiet drunk. He can't speak so barring the occasional attempt at trying to sit up he is relatively low maintenance these days. Then there are others. The Asian man who screams all night and punches the nurses. The older woman who begs the nurses not to leave her alone. Then the brain surgery patient who sometimes remembers what year we are in and sometimes rambles about bizarre things. When you are around them too long you feel for them. HIPPAA prevents you from knowing too much but when you come back from the bathroom and the bed is empty you wonder what happened even if you can't ask. I have my zombie apocalypse contingency plan of where and how I would hide Jason safely, but I wonder for the others. The ones who never have visitors and are in dire straits and the ones who beg the nurses not to leave their side. We need to learn how to take better care of our people, our friends and our families. Hospitals can do but so much. That love component has to come into play. Everyone says the same thing:  the recovery process is so much better and faster when family and friends pitch in. I can't imagine NOT being here for Jason. I know not everyone can but somebody for at least a little bit can come for every person here can't they? You can't have no one. Not in this place. Lives depend on the component of love.

Me and My Boy

Another day, Just Believe...

Another Day, Just Breathe...

Subtleties of Life

 I am sick. Suddenly I am really tired all the time and my throat hurts. How? Who knows. Living in the Petri dish known as the hospital could do that to you. I'm wearing a mask with a windshield. My breath fogging up the plastic every now and then when I move just right. I realized I can't listen to music anymore. I drove here in silence. Xmas music makes me feel like I am in the twilight zone and the kind Jason likes makes me want to cry hysterically as soon as the chords start. This morning a car drove by blasting drake as I walked by his bedroom and I broke down. When he left for college he took almost everything and now it is all back. Everything except him. He was not in his bed, and I could not pretend he was away at school. That defense mechanism doesn't work in my head anymore. The kind that throws up pretty non offensive scenery to help me past the moment unscathed. The kind that quickly makes me think of something else so I don't give in to the anguish. Now every moment is real, I can't fake past them. Every moment whatever emotion I am in takes center stage and I have no control over it. 

He moved yesterday, almost getting himself out of bed. He started to sit up and move his hands to get off the bed which is amazing for someone confined to a bed for the last 6 weeks and terrifying because God forbid he hurts himself. He is on blood thinners falling out of bed could be catastrophic. But My boy is strong. So strong! You have no idea how strong this boy is. He looks like a lanky bag of bones but he exudes such force that can require me and 3 nurses to subdue him. 

He has looked around a little more purposeful in recent days. Nothing like what makes him my Jason. But noticeably different nonetheless. His long eyelashes looking like bat wings as they flutter to bring himself to a more conscious state. The specialist Dr Honig said that is how it starts. He will look around more purposefully and deliberate until one day he tries to communicate in a way we understand. It's working. At least we think so. I shaved his head because his hair was getting too long. I want him to be mad at me over it. I want him to wake up and want to argue with me. I would do anything for that. I talk to him, every single day. I can't remember talking this much. I told him about Grandma Vicky's dry ass Thanksgiving turkey and how Tristan won't stop talking. I told him how much we miss him, and how many of his friends are hoping to see him soon. Mostly I ask

Him to come back. To fight his way through the murky waters of psychosis and to give his mom a word, a knowing glance or a squeeze of the hand. Something to get me by again because I am running low. It's been a while since he raised an eyebrow for me and I'm clinging to the tattered threads of that memory for dear life. I need another hit Jason. I need another fix.

The Xmas tree is up in the lobby, it feels so strange to see the beautiful

Monstrosity there. Brilliant lights and bold metallic balls glistening in the lobby light, twinkling and inviting you to enter the euphoria of the season. The season for giving and family and everything else is upon us and my intended plans have flown out the window on fire. I will be here. Carmelo, family, friends and strangers taking Care of Xmas for my babies because their mommy is broken and she can only be one place at a time. I have to make sure Jason does not spend the holiday alone. I have to make sure that if there is a Xmas miracle I am here to see it. 

Almost Human

I have been here so long i almost forgot what it is like. To live like a human being that is. To not constantly be running the gamut of information, anxiety, stress. I got my friend Myriam to take a shift for me and stay with Jason during the day so I could go home. Nothing to do in particular just be at home with my feet up on my couch. Watch my kids tell me they love me and bicker over who can use the color yellow. To sit around with Carmelo with no errands to run, calls to make, people to ask me questions. I cleaned out my purse today and realized for the last week or so I have been walking around with Jason's tooth in a plastic jar. Why? I don't know. It was just there. I forgot. And living in the hospital does that to you. For a little bit I was able to pretend that life is not as harsh as it is. For a few minutes I felt better because someone I trained to look for things like me was sitting with Jason and was making sure he was ok. Sure there are nurses in the hospital and they are excellent. But Jason's condition requires that extra. Because when I have not been here that is when things happen. The person to realize he is rubbing his stomach and snagging his stomach peg. Someone to see that he is clenching his teeth and is pro-active in popping in his mouth guard. Someone who sees the map of his blood pressure is low and eyeballs the resident assigned so that they give the appropriate Bolus. Without someone these things go amiss and he clenches his teeth to the point that he breaks a tooth and winds up with pneumonia. It's not that anyone isn't doing their job, although I was upset and did think this was the case. But this is why he needs special attention. That is what a private nurse could do for me. but I can't afford one right now. This is what I would settle for. I would settle for a weekly "pretend" where I can be with my family and I know my son Is ok..

Jason still has a blood clot to worry about, pneumonia is not gone but under control. He bit his tongue yesterday and kept it clamped between his teeth until he bled and I made a desperate attempt to open his jaws

With a tongue depressor that worked.  Never a dull moment with this "new" Jason. I can't wait to have my old Jason back.

8 Hudson North Thanksgiving

When I thought m&m's and Milano cookies were my dinner the lovely crew at 8 Hudson North who know I am a stressed out maniacal mother who yells and screams and says slick things when she is pissed off came to my rescue with a plate of food. God is always providing and looking out for me when I do not expect it. Then my friends sent me food, thank you! And I got offers pouring in for a local delivery! Thank you to everyone who prays for me and Jason.  I was more than content with my vending machine choices but I do appreciate you all looking out for me when I seem to forget to look out for myself.

Thanksgiving Dinner

It's not the usual but I get to eat with my baby so I thank God for every bite.

#pray4Jason

Absolutely

Every Breath You Take

Every breath you take and every move you make
Every bond you break, every step you take, I'll be watching you
Every single day and every word you say
Every game you play, every night you stay, I'll be watching you....- The Police

I would have started cooking Saturday. Yep, that many days from the main event. There are desserts to prep, meats to season, special recipes to try and recreate and all of that takes time.

Jason would say,"you're crazy."

Carmelo will roll his eyes and second the statement.

Samantha and Tristan would drive me crazy and interrupt me a million times over until I finally concede to taking 10 of the probably 50 different things I want to make off the menu.

Thanksgiving had become more of a main event than a day of thanks. Even I would have to admit while I would definitely make sure we said Grace. Grace was not the biggest part of the day. I am always grateful, always. I never go a day without thanking God for what I have because I can still remember the times as a child that I did without. I can still taste dirt poor, hungry and unfortunate like dishes forced on your plate by a school lunch aide. I never liked them. I never like living that way, but sometimes when you are a child that is what is served so you don't have a choice.

I gave my kids better. In fact maybe too much. Jason has always known what eating good is, even if as he has aged his definition equates eating good by constant takeout. The kids have things they hate eating and choices in things to eat. While when I was a kid the choices were what was served or sleep for dinner.

On a day like today I always give thanks for my kids, my life as I currently have it and the food. The glorious food I am allowed to dress up and manipulate however I want.

Today I don't want to wallow in what I don't have anymore. I don't want to ask God for anything because I ask every single day. Today I want to say Thank you to the powers above that have kept my son alive. Have given me the will. Have bestowed upon my family the gifts of help. Just thank you for everything. I hope that everything is paused so no new developments arrive and Jason remains safe. I hope that while everyone enjoys the wonderful meals splayed out before them they also take a moment to be thankful for the things we take for granted like or health and our family. We could have been born in war torn Syria and in fact we are here. Free and in a modern country where my son was diagnosed in 5 days with a rare disease. 

Jason is enjoying his Thanksgiving meal early Gevity 1.5 in a tube directly into his belly. He is on the trach-collar, which means he breathes on his own. Humidified oxygen gets blown his way from a tube but every breath he takes is his own. This is good news. One complication under control and a few others still to deal.

I miss my babies. All of them. I miss my husband. I miss my bed.

Right now this minute I will say that while I wish my life was very different than what I am going through currently, there are plans bigger than my own at work. I actually joked recently that I must be some serious entertainment value for the powers that be. God gives his fiercest battles to his strongest warriors, right? At least that is what they tell me.

From our family to yours: Happy Thanksgiving 

......Since you've gone I've been lost without a trace

I dream at night, I can only see your face
I look around but it's you I can't replace
I feel so cold and I long for your embrace
I keep crying, "Baby, baby, please"

Oh, can't you see you belong to me

How my poor heart aches with every step you take .... The Police/every Breath you take

Reminder

Better Days

Better Days

They Tried To Make Me Go To Rehab...

This flying by the seat of my pants does not work well. I don't like it. But who cares what I like these days. The moral of this story is we all want Jason better. But getting better comes in stages. The crazy Las Vegas stage we are almost out of. It still happens! Just not as often as before. He is heavily sedated. "Calm" as they say. Sometimes they try to attribute this calm to his "new" natural personality for which I look at them sideways and we end the discussion by admitting the calm is because of the meds.

His IV drips have been discontinued. Everything that was constant infusion, are being transferred over to more bolus and injection style application. This is all in preparation for the next big step.

Rehab.

Jason doesn't speak. He lost his ability to swallow. He does not recognize me. He lays in bed most days and stares off into space. Rolls his eyes in the back of his head and does these movements that any other person not versed on his condition or in the medical field would look at perplexed. His motions are not his own. It is the malfunction in his brain caused by the disease and the swelling. When they begin to subside these things will become less and less until eventually he wakes up one day as Jason.

When I walked in here Jason was talking to me and texting on his phone. When they walk in and tell me how good he looks, I smirk at them. A smirk that says a million words at one time, none of them in agreement. Yes, he is better. Better than yesterday. But by what measure are we asking if he is better? Better as in closer to the day we walked in here? No. I even tested it by putting his cellphone in his hand, and I watched it fall through his bony fingers. But better than yesterday and so we need to discuss moving to another place where new doctors and nurses will handle him and help me.and I have to find a new uncomfortable chair.

I wish I could just take him home. I wish I could have a nurse take care of him twelve hours and I can go to work and come back and take care of all my kids in one place. But even if I could afford it right now he is too sick for that. They did say if I could afford it he could eventually receive care that way. But he is not yet at that place, and I still can't afford that. 

Now with the three brain cells I have left. The lazy one that forgets to breathe, the emotional one that makes me cry all the time, and the angry one that makes me run my mouth off when I am pissed I have to figure out what Rehabs/Nursing Homes are good for him and his condition. How do you make those phone calls? What do you say? I have no idea what I am doing.

Feeling Guilty

I went home yesterday to shower and change and come back. The panic attacks are not better. It still takes several blocks away from the hospital before I am able to pull it back. I still call every few minutes to remind the nurse of something, or tell them something I forgot. But I needed to go home and shower and grab a few things and visit my little ones. I saw my babies. My sweet faced babies. My big girl who can never have enough attention and my baby boy who kisses me open mouth so our kiss echos in his gums. I love them and I miss them and I broke down again holding them in my bed and kissing them all over. They deserve a real mom who is present and their for them and not falling apart at the seams trying to care for their brother. I wish I could split myself in two and give them what they deserve while continuing to advocate for Jason. I wanted to stay there and spend every moment with them and the last thing I remember was holding them...

I fell asleep. After days of living in my chair - I collapsed in my bed.

I woke up in my big comfortable bed panicked because I left Jason. I gave in to going to sleep when I promised him all I would do is shower. What if he woke up out of his stupor looking for me? What is something God forbid happened? I was angry that Carmelo and Shana let me sleep. I called and the nurse told me what they always say in an even tone, "It's okay he is fine." I wanted to believe her. I wanted to. But I didn't. I started to get ready when Carmelo came into the room. He tried to calm me down. Calm does not come so easily anymore.

Because Sometimes I Am A Little Slow

Sometimes it is an exercise trying to find the words for the indescribable. The best way to do it is to not try to be profound or astute - but to be real. If that means spelling mistakes, and grammatical errors - forgive me my Grammar Nazi's but it will happen. Two nights ago when we got moved to Step down the elderly white woman across from Jason was visited by a young and pretty black girl who sat there and watched all night. Assisting with anything she needed and happily running to get anything asked of her.

The next day when another older looking black woman showed up. In my head, I imagined Jason's bunk mate must have mixed children, or maybe foster kids? I did not think too much of it, because as blended families go I think it is wonderful that when grandma is in the hospital so many feel so inclined to help. That's what sleep deprivation does to me. It makes me a little naive. In my head I put together their family dinners, and imagining grandma in the bed with corn rows or maybe even her doing corn rows on her sweet looking grand kids.

Then the new older woman began complaining about her agency. And the world came into a little more focus. There are private nursing services - I looked into one and at $700 a shift I started a GofundMe to try to afford. Amongst all the chaos and nonsense I completely forgot about it. Forgot about everything because Day In and Day Out I think of Jason. I am present in the minute and when it fades away I am in the next moment not looking back.

After discussion I got the number, and the aide who gave it suggested I could ask for her in particular to watch Jason for me. I watched her sleep for 4 of 12 hrs of her shift and complain about her agency on her cellphone for most of the morning. That's Ok...I think I will keep looking.

Patience

I sit here on the stairs
'Cause I'd rather be alone
If I can't have you right now
I'll wait, dear
Sometimes I get so tense
But I can't speed up the time
But you know, love
There's one more thing to consider

Said, woman, take it slow
And things will be just fine
You and I'll just use a little patience
Said, sugar, take the time
'Cause the lights are shining bright
You and I've got what it takes
To make it, We won't fake it,
I'll never break it
'cause I can't take it

[whistle]
...little patience, mm yeah, mm yeah
need a little patience, yeah
just a little patience, yeah
some more patience, yeah
need some patience, yeah
could use some patience, yeah
gotta have some patience, yeah
all it takes is patience,
just a little patience
is all you need *
 - Guns N Roses

Remember Medicine is a practice. We are in an excellent place. They are all doing the best they can.
Trust and Believe everyone here is doing the absolute best for him.

Just be patient. Please just be patient.

Land of Confusion

I remember long ago -
Ooh when the sun was shining
Yes and the stars were bright
All through the night
And the sound of your laughter
As I held you tight
So long ago - Genesis


Every story needs a villain. In my story my son is the victim and aside from the disease I have demonized his medical team. The medical team who advises me and gives me all the clinical outcomes in matter of fact tones with little to know emotion and who frustrate me to no end. I like a lot of these people. They attempt friendly, always cordial, with the exception of a few, and Another time, another place we may have even have been friends. I can sometimes catch a swatch of the human they are outside of this place. The one who understands every tear drop I cry over this boy.


I spoke with a nurse in ICU about the crazy. The kind she had to even admit she can't go home to explain. You don't get much sympathy from family or friends when you detail how you tied another human being up, or muzzled them onto a ventilator for their own good. Because although there are technical terms, and there are very valid reasons for why these actions take place, and here the actions make the utmost sense even to me: the actions remain actions a lay person could not properly understand or appreciate. So while every medical professional here has done everything right by medical standards, they are judged by lay people that no matter what could not understand.

Even I get tired of explaining. That's why I don't answer all the texts and calls. I get tired of having to explain from the beginning the whys and wherefores. I am just tired period.

Jason's blood clot threw me for a loopty loop. Dr. Honig gave me a roaring review of how great a candidate Jason was to get over this disease, but his voice dropped and his quick smile faded when he mentioned the complications. The complications are what make the sinister Michael Myers music start and makes the panic rise. Jason was in ICU and the attending doctor and his team concluded that he would undergo a particular regimen which would thin his blood and eventually dissolve the bloodclot. Now in the step down unit the doctor's have a difference in opinion. Now they want the PICC line removed which poses a chance that Jason's blood clot could migrate. If I don't move it, they advise that the blood clot might not dissolve.

This difference of opinion is what makes me look for a villain. They each come to me like an x-boyfriend, playing on my emotions trying to get me to concede to their form of treatment so they can have their way. I want to believe them, but they completely contradict themselves and offer me the most soundest of logic. Each team presents a case that counters the recommendation of the other. The very stark "Listen this is what we are going to do" one morning to the less than 24/hr "This is what we intend to do now" with no change in Jason is the contrast that keeps me on the edge of my seat, panicked and afraid. Staring at Jason with tears in my eyes, hysterical over the exposure he has to the unknown. This professional advice from people who I have no choice but to trust and believe - terrifies me. Who is right?? Who is wrong?? How do I decide this without hurting Jason. It's all opinion. It's all based on preference. None of which is mine.

Wanted

Sometimes I sleep, sometimes it's not for days...

The people I meet always go their separate ways...
Sometimes you tell the day
By the bottle that you drink...
And times when you're all alone all you do is think...- Dead or Alive /Jon Bon Jovi

We are back to pseudo-critical. In the step down unit with a bigger patient to nurse ratio. They know I am here, so they can do that. The nurses here are all very nice, most hugged me and welcomed me back. Others smiled and asked if they could get me anything. It takes a special person to dedicate your life to helping others. When you come here Anxiety gives you a measure of expectation towards everyone. They should be more knowledgable than you and they should be perfect. No mistakes. But being here as long as I have you realize that is not true. Everyone here is human and they make mistakes. The hope is that someone is around to correct them and no mistake initiates the ultimate consequence.

As soon as we got here things were lost in translation. Unnecessary X-Rays were almost taken, bloods that have already been done, catheters were intercepted. Now when they try to talk me out of a firm "NO", they don't scare me with their reasoning. I have been here long enough that I picked up a little education and I can argue back in their language with sound logic. I have to be more hands on here because people are busier. I do pillows under his butt, oral care and they come around once a day to catch up. When all was re-evaluated the unnecessary probing that almost happened was sorted out and I thank God that I am here. By all accounts this is a great hospital so getting annoyed is futile. I am blessed that I do not have to know what it was like at a bad hospital. 

I restrained Jason to the bed myself tonight. No tears anymore, I am still pretty numb. Either his hands remain forced at his side or he will grab his trach-color again. The things we do for love...

Through 6 degrees of separation I was introduced to someone who has lived this nightmare already. Here in this very hospital with her own child I met the general of the war with this disease. This ridiculously strong woman who lived and survived this ordeal and is now on the other side. You never realize what you sound like until someone else says your words. Two years after: her child is better, recovered, normal. It just took two years.

Two years...

I know what they tell me to expect. I know what I say I am prepared for. But I don't know how much of that is actually tangible. I miss my son. Thanksgiving his 2nd favorite holiday after his birthday is this week. He loves my ham. He always asks every year who is coming and what I am making and the ham is always his  favorite. I'll be here in the hospital with him. Not eating my ham right alongside him.

My mom is cooking this year because my little ones deserve a holiday too. While their mom can't function I am asking others to step in and make sure they don't skip a beat. This sorry life has me missing my kids-all of them. I stay here to protect my older son and I miss my babies at home something serious.

I don't know what to do. I am trying. I don't know holidays without Jason. I grew up Jehovah's Witness. Making a fuss about the holidays have always been for and because of him. Do I buy him Christmas gifts this year? Do I hold on to them and give them when he wakes up reminding him of how much time will have probably passed?

My new friend told me the great part of this whole thing is that Jason won't remember. Her daughter didn't. To Jason this will all be a blur and he will be able to continue his life.

What about me? I will remember everything.

Thank you

I want to thank Lilian Bayron and Alexa Rosenth for their selflessness and everyone listed below. It was unexpected and appreciated and will go towards Jason already mounting medical bills.

I Ask Myself, "What Am I Doing Here?"....

On this date seven years ago it was hot surprisingly, I am not sure where we were exactly but it was definitely a lot closer to the equator than where we came from. The smell of salt water was amazing! It makes you feel fresh and alive. It scrubs your lungs a little. We cruised in a large group: I with Carmelo, Manny and Tony, Nando and Denise, and Jason shared a room with Tita. He was such a good kid. Loving the sub zero temp of the salt water pool and going along with anything and everything we wanted with little to no resistance. He let me take this picture of him, with fake moustache and flamboyant hat just before we hit the Mexican coastline.

He loved breakfast buffet because the bacon was endless. He loves bacon, egg and cheese to this day. I remember watching him eat and thinking a good mother would say something about the ridiculous portion of bacon he gave himself. But he has always been thin and I love him so I thought I Would let it slide for now and try and basic food group him next meal. The day was perfect, and I remember thinking how lucky a kid Jason was being pulled out of school for a cruise vacation. Jason has known what I never did, a vacation for me as a child was going down the block to sleep over grandma's house. But look at Jason, cruising the Caribbean and the Mexican coastline!  I had a mimosa, the frothy sweat from the glass masked the color of my drink until I wiped it away and eventually the moisture beaded off...

Like the beading sweat on his eyebrow right now. The storming in full effect. Heart rate, blood pressure, respiration rate and temperature all up and climbing. It's viva Las Vegas again. His tracheostomy has been downgraded to a trach-collar. I should be happy about this. I am not. But I am told I should be. Jason is breathing on his own with just a constant flow of humidified oxygen blowing toward him. Every breath his own. We are being moved to the main floor today. Everyone is afraid of me today. I can see it in the bashful way they approach me to tell me about the move. They don't look me in the eye and tell me "how good" this is for him. I guess I am supposed to react a particular way about this. But I haven't. I am uncomfortable about the move. I am tired of the uncertainty and change but that is the thing about this disease: it has taken me completely out of my comfort zone. 

He is sedated again, compromised immune system and complications and all and we are going to the germy floor.

What am I doing here?

Stressed Out

I really know how it feels to be, stressed out, stressed out

When you're face to face with your adversity

I really know how it feels to be, stressed out, stressed out

We're gonna make this thing work out eventually - Tribe Called Quest-Faith Evans

I don't leave Jason alone. I am too afraid to. During the day even in ICU with a nurse watching him and doctors walking around no one watches him the way I do.   I try to leave in short stints while someone is there with him to go home to shower. No sleep, just a shower and maybe to eat and kiss the kids. I have to run back to Jason.

Leaving has not gotten any easier. The panic attacks take over every time we pull away and I can't control them. What has gotten better is my understanding. I realize I have panic attacks. That part of me that is broken plays a montage of tragic and crazy images and scenarios in my head as I step into the car and I become hysterical. Carmelo rubs my back or holds my hand and assures me it's ok. I don't believe him entirely but I pray and keep telling myself to trust God until the calm comes. 

The little ones have school and poor Sammy has been late almost every day since school started.i have to take her to school in the morning which leaves me struggling for an awkward timeframe for coverage for Jason. 

It's all too much. To too much to think about.

God I trust in you to find a way where there seems no way. I trust that your healing hand is on Jason and you will see him through, healed and happy.

I am too stressed out to believe otherwise.

Amen

Walking On Broken Glass

"Because all I ever wanted
It's in your eyes, baby,
And love can't lie, no
(Greet me with the eyes of a child)
My love is always tellin' me so
(Heaven is a kiss and a smile)
Just hold on, hold on
I won't let you go, my baby"-  Father Figure/George Michael

I feel like a tread through shards of glass dealing with this situation. It's dangerous  if I am lucky nothing will Nick me but I am always on edge and when I feel a shard of glass cut through my skin a half expect it and am upset by it at the same time.

There is a blood clot in my life right now. A horrific blood clot threatening my son, as if he does not have a world of threats on him already. I can't blame anyone, so I am told, these things happen. I can't get rid of it myself or help it along. It is something medication will help and Jason's body has to resolve on its own.

I have to remain optimistic. I have to be a fucking care bear who has no clue what disappointment, upset or sorrow is. I have to go around and blow sunshine out my ass and rainbows in my smile

Because positivity is a finicky bitch who won't be your friend if you have a stitch of drama. 

"You know you are the only mom who stays here in ICU." The heavy metal guitarist looking male nurse told me, as he and Jason's nurse Elyse changed his bed. "You have to understand he is getting the best care and there is nothing more you can do." 

I didn't answer him. I wanted him to shut up. My baby is still not fixed there has to be more I can do. His matter of fact tone told me he sipped the Kool-Aid for this place. I am still not so easily swayed. I  not the kind of mom who can go home to sleep at night while

Her first born is in the NICU.

Mommys always fix booboos and things that hurt and take care of their kids when they are sick. But here is my kid and he is  in need of help and he gets these crazy complications and is somehow better AND worse. I wish I had an answer. I wish heaven had a phone so  I could call God directly and plead my case. 

I am not giving up, I am not going to collapse into the pool of jell-o I want to become and quiver in my own grief. I know I need to be more faithful. I know I need to be more patient. I know. But I am broken and wading through shards of glass and I have all these variables that need constant attention.

I need a break. 

I need Jason better.

I need a smile, I need a sign that he is going to be okay.

Imagine

I did not cry today. I did not feel sad. I was dealing, I was trying, I was present. Jason's situation is no longer a surprise and the freak out I have over his tracheostomy is beginning to wane. I accept that this is life right now. It sucks. I hate it. But it is here and it is real and I have been dealt my cards so I have to play. Yesterday was an odd day. Jason did not really storm. He was calm and quiet - where the night before he suffered low blood pressure for the entire night and had to keep getting fluids via IV. I was on edge all day because it felt like the calm before the storm. Nothing comes easy. An easy day means something more sinister is coming. I kept asking to have him checked because his calm day unnerved me. Familiar to me is chaos, and as much as I hate it- chaos is the new normal.


I have become the type of person that looks at nice things and instead of saying thank you, I ask, "why?" I am afraid to believe that there is "nice" left. Because anything "nice" for Jason comes with a consequence.  Yesterday's beautiful day was brought to you by this terrible morning. The morning that has me bawling because I just need for Jason to catch a break. I'll take the pain and anguish but I just want my Jason to be spared, and healed and NO MORE COMPLICATIONS!!!!


The Doppler test came back. There is another serious complication.


God I beg you to please see Jason through this.
Lord please don't allow any of these complications to cost me Jason.
Please see him safely through this disease and his complications with
no new ones to arise.
God please I beg of you, please.


Amen.

Reach Out and Touch Faith

"Your own personal Jesus

Someone to hear your prayers

Someone who cares

Your own personal Jesus

Someone to hear your prayers

Someone who's there" -Depeche Mode

Anti-NMDA-Receptor Encephalitis has so far robbed my son of a month of his life. Jason has over 30 days he will never remember. In this time of blank space, I sit here watching, a maternal centurion wrapped in battle armor of love, sharp intelligence and resolve completely determined to see him through this. I have no idea what I am doing, I have no idea what to do next. My own paranoia and emotions chipping away at my psyche Forcing me to live an anxiety riddled nightmare where every day my son is in a bed, completely incoherent and unable to wake up.

The good news is the swelling in his brain has gone down. We are approaching goal! 

The not so great news is that his "titer" in his spinal fluid has remained the same. In remedial teachings of this disease I was informed that once the swelling goes down Jason is back. The real deal is once the swelling goes down AND the antibodies in his brain begin to lower he will be back. The backward receptors in his brain are sort of like a plaque. They prevent him from functioning normally right now. They need to wash out of his brain and it takes time for that to happen.

The chemo is currently walking around in his body and turning things off in his immune system. Stopping the production of B cells will begin to dwindle the load in his blood which will pass the blood brain barrier and begin to perform a brain cleaning with industrial strength pine-sol.

This new information is disappointing and upsetting and I know that I should feel all these things like angry and sad and mad. But right now watching him sleep peacefully I am Just numb. I can't get excited anymore and I can't get upset. I just have to exist. If I can exist long enough to take Jason out of this I can worry about what has died inside me later. 

Right now I am going to trust that greater things than I are at work on Jason. Karma is reviewing all the good I have ever done or attempted to do and will bestow her justice on my son. God is going to hear my prayer and the chorus of prayers of countless others and not allow complication, and will heal and restore Jason to the person he was before October 18th.

I have to continue to reach out and touch faith.

Beyond The See

In times when we as humans lose control we always look to God and things that are bigger than ourselves. We have to. To believe that this tangible life is all there is especially in time of crisis is cause for us to Go Mad. In times of crisis we need our sanity, circumstances can chip away at it, the more you have the better.

I was upset with God for a long time. My cousin Zahira who had a hard life died and I could not understand why God let that happen. It took days before I approached him with Jasons situation because my anger towards him has been 15 years strong. I never liked church because I hate the hypocrisy. I don't think  there is a religion that really teaches what Jesus did when he was here. Jesus walked around w/ people who would be deemed "unsavory" and saw the promise in them. Never judging, never condemning, and yet our imperfect selves always seek to exclude people. Calling someone out for their sexuality, religious denomination, or beliefs. 

There has to be something beyond the "see" because there is no way we are just here alone. Left to our own devices. I

I am not committed to any one religion, but I do believe in God. I don't know what he has in store but I am learning to trust him. I am learning to try to let go. It's a process that does not always go as planned, but my willingness to try is some cause for celebration.

I am here again, in my big uncomfortable chair, playing bootleg MD. Requesting the necessity for fluids because his blood pressure is too low. 

I am tired. I have a long way to go before we are at goal. I don't know how much longer I can put up with this, but I am going to keep trying. 

All I can do is try.

Holding on...

Not Having It

Last night was bad. Jason "stormed" all night. He shrugged out his "PICC" line and his fentanyl patch and now they are brainstorming new ways to treat him. The  doctor approached me about Methadone.

Methadone. The drug my 80's childhood knows well because it is the go to for all the crackheads I knew who seemed to defy gravity and never fall over. The drug that clinics pop up for that no one wants in their neighborhood. 

I can't let them give Jason methadone. Call me dumb, call me uninformed, call me naive and closed minded. I will be all those things. But the marketing campaign for methadone is emblazoned in my brain and the crackhead poster children I once knew smile at me with big toothless grins and Polk marked cheeks and wink on big blue banners in my head. 

I have conceded a lot. But not on this. Not my baby. Marketing has gotten to me. We have to find another way. I have put up with a lot here. Jason is restrained in bed. He wore a muzzle for almost 2 weeks, and I still have not gone to jail for jumping across the bed to kill the person with the needle when they sedate him to sleep.

They will not give my son the itchy-achy-can-i-get-a-dollar crackhead medicine -not happening.

We Have Two More Graduations Left

Jason has his Bachelors and Masters to finish before his school days are done. There are big plans for you yet Jason!

No One Understands

He is my heart walking around outside my body.

I love this kid.

My CoCo Brain

I Love His Face

Prayer 4 Jason

Dear God,

I approach you now in prayer. Tonight I come to you as your daughter who has often needed guidance. I beg you humbly to please protect Jason tonight and continue to pass your healing hand on his mind and body restoring him to his original self. 

Please grant wisdom and guidance to the nurses and doctors who are in charge of his care this night. Please make their response times for his needs quick and please ensure that they choose the best forms of care for him with the least harmful effects.

Nothing is impossible through you.!

Thank you for all the things you have already given me and the blessing that have yet to come.

Thank you for forming a hedge of angels around Jason this night. In your son's name I end this prayer Christ Jesus- Amen

#pray4jason

I miss my life

Jason and his sister Imani

What A Difference 2 Weeks Makes...

Today on the left, 2 weeks ago on the right. We are getting better.

Better Times

In His Own Words

I found this picture on his phone dated 10/21/15

They Say It's Too Early

They said that the medication

In His Own Words

This picture is on his phone from the first day we got here:

On The Clock

The clock started. Every minute of every day going forward there is a watch on Jason. What am I looking for? I am not sure. It's something. It may not come in the form of complete sentences. It may not come with him getting up and walking out of bed. I am not sure how it is going to come. I just have hope and faith that it is coming.


"It" can't come fast enough. I am tired of this place driving me crazy. I am tired of the information, miscommunication, and misinformation that surrounds everything concerning Jason here. His blood pressure, his heart, his kidneys, his blood. The tests, the false positives, the double negatives. The bed sores that after careful checking upon my insistence have been downgraded to diaper rash. Everyone is human, and I know this. But the constant push and pull of my emotions is too much. I have one doctor tell me he will be honest with me my son could die, and another tell me he is out of danger in the same day with no status change in him. I can't keep going like this, playing second string and catching the balls they drop. And they come to me in earnest, explaining to me this information that is so important, and then coming back to me later with a completely different story - told just as earnestly - because now they have a better understanding.
The thing is here a mistake could cost me Jason. There is no coming back from that. That would be Game Over on so many levels I can't even explain. They don't see it the same. While no one wants that to happen, the only person emotionally invested is me. They get new patients every day. For them, there will be ANOTHER "Jason" in no time. But not for me. I only have one.

The stress is getting to me. The sleep deprivation. I am still trying and the fact that I have now tried for 33 days and counting is a testament to Jason. He is strong. He goes every day worse than me, and after countless screw-ups from the people here and he is still going. He is still strong. He is determined to get better and come back to me.


It's hard but I have to remain strong for my boy.

Raising Hell

Jason got chemo yesterday. 1 dose and we wait. The next month is looking for improvements and seeing what is going on internally. The idea is the immune system will be shut down and the B cells already circulating in his body will begin to be killed off by IVIG and as his body is no longer producing anymore the swelling in his brain will subside and he will slowly return to being "Jason'.  This is the goal. The Moral of the story, the ending we all want. But again - from here to  goal there are yards and yards that are open to complication.

I left Carmelo here. I have been here 3 days and I have not showered - so I went home to shower, and buy better products for them to use on him to prevent bed sores. I am exhausted. I slept for 2 hours in my bed and got up panicked and raced over here. Again feeling guilty for not being here for the few hours I left. Jason was fine. Chemo was done. He is resting comfortably. As I sit here, doing work, returning emails I look up at his virtual video game screen and notice his blood pressure is low. Again, I am layman - I know nothing about medicine. Nothing about what should or should not be done to anyone - but I ask a lot of questions.


I ask A LOT of questions.


Jason's blood pressure is taken all day long and there is something called a map. For you or I 120/80 or some slight variation is ideal. For Jason because of his current condition, his numbers are different they are usually much lower - and one thing they tend to go by is an additional number after his blood pressure that shows in parenthesis called a map. They tell me that the "map" should not go below (60) for long. Sitting here, looking at his Vital Video Game - I notice Jason has dipped down to a map of (42) and remained there for almost 2 hrs.


I ask the nursing student who is helping and he tells me in a friendly tone that he is not concerned. He feels confident Jason is ok. I sit here uneasy with that answer. A student should be carefree and not concerned. Somebody with kids will always be. So I walk over to "the doctors' who now run into his room to check, and want to know when did I first notice. Now his medication is being stopped and they are giving him a bolus of fluid as they assure me they don't think anything is wrong, and that he is ok. They thank me for bringing it to their attention because 'we are a team and we help each other." And need me to keep watch of any other discrepancies I notice. Me? Me!?!? His mom who doesn't know what the hell she is reading, but picked up a little jargon living here for so long? They want me  to keep watch because they are so incompetent doing their jobs is beneath them.


Have you any idea how tired I am? Double and triple checking them? Nobody knows what they are doing here. How many of their mistakes am I going to find and fix? I can't trust them. I shudder to think what would happen if I had stayed home today and tried to sleep in my bed. I could have been under the down comforter that felt like heaven sleeping in peace while my son was here developing organ failure. Although this is Columbia Presbyterian a hospital affiliated with one of the most prestigious IVY League schools in the country these are the most intellectually astute idiots on the face of the fucking earth. They encourage me to go home everyday. EVERY SINGLE DAY they ask me why I don't go home to sleep in my bed. And say, "He is in good hands. We are the best at what we do." What is that exactly???? Because I have yet to really figure that out. The next person who asks me that I am going to scream at the top of my lungs:
BECAUSE IF I LEAVE YOU FUCKERS WILL KILL MY SON!


I can't believe this is happening.

A Spoon Full Of Sugar Makes The Medicine Go Down...

Watching it come down through a translucent tube and disappear into the bandage into his arm doesn't seem so bad. Nothing seems bad really. Not the hole in his neck. Not the wire in his stomach. Being here too long does that to you. You accept the crazy as fact and it become okay because everyone else says so. The IV's are down from 10 to only 3. The sedatives are at the lowest dosage. Now as his nurse Dennis puts it, "The NMDA becomes more apparent.' He lays in bed making expressions, and doing things that are not typical Jason. As if my mental state was not fragile enough. I sit here, helplessly and watch. I watch all day, everyday, all night, every night and I look for an 'in" for when his eyes register with this world and he will give me a sign that he is back from wherever he goes so I can talk to him and get a reaction. I talk to him regardless but it is usually the same speech everyday.


"Jason it's mommy.'
"Jason you are sick right now but you are going to be okay. Don't be scared I am here with you.'
"Jason I love you."


I recite this all day long, because everyone says even when he looks like he is not with is, he can hear me. So just in case... I want him to know these things.


Retuximab starts today. The 2nd line of treatment they are so eager to give him. It is Chemo Therapy. There are symantix involved because it is not as aggressive as some Chemo therapies are but its a matter of Tomato - tomatoe that differentiate it. This can expedite his treatment. This could work wonders for him. This could give me everything I want.


This one that terrifies me. The one that will mess up other parts of him to give me his brain back. I keep thinking of the movie Contagion and how easy germs are transferred. I have wiped down his bed with alcohol and brought my own Swiffer and Swiffer sheets. I want his room to be a sterile environment so once this is in his system, the air purifier I bought from home can help me protect him from germs.


I know that's the 'crazy" talking. The paranoia. The part of me that is now "broken'. What's sad is that I KNOW that it is CRAZY to do what I am doing, but I feel like I HAVE TO DO IT ANYWAY. Because then I left no stone unturned, and I know I am doing EVERYTHING I possibly can. The medication will suppress his immune system making him more susceptible to infection. Everyone wants to visit - and again CONTAGION plays in my head. Every germ, every sneeze, every unwashed hand and I call downstairs to security to triple check my restriction list is still in place because I can't take chances. This is his life we are dealing with.


I can't lose my son to the common cold.
I can't lose my son - period.

Sweet Child O' Mine

Through all the machines...

Wires...

Catheters...
Tubes...

Ventilators...

Contacts....
Probes...
Files...

Charts...

EKG's...
EEG's...

X-Rays...

mRI...

lP's...

ABG's....

This is what I see laying in bed every day

This is why I can't go home.

Daily Life

Coping Mechanisms

In times of anguish and despair in order to survive we have to find coping mechanisms. Our body will have us reach out in a way that brings some measure of comfort. We will reach with earnest towards some measure of care for ourselves as a means of self-preservation. For some people it is food. As upset as I got that so many were trying to shove so much down my throat when I did not want it I did not take into account that they were trying, the best the could to use their coping mechanism. Eating and feeding others can bring comfort. It is A-typical of the American population to indulge in this behavior which is why so many are morbidly obese.


This circumstance has changed me. Where once upon a time the coping mechanism of McDonalds, Wendy's or Panera would be a euphoric measure for me. This situation has shut down my digestive track. Food makes me sick and if I am forced I vomit. Although I try, coffee and lattes are my fare of choice these days. While I hoped to be fit by 40 - Lord this is seriously not what I was talking about.


Nothing fits anymore. My clothes are so baggy now I look like a member of Wu Tang Circa 1994. Who the hell wears a baggy bra? Can you answer me that one? While being smaller has always been a passion of mine, this is so not what I was talking about. I want Sophia Vergara slim not Pookie from New Jack City. But like everything in this situation - I don't get choices. I can't pick or choose what I want. I am handed things and I am given limited time to show acceptance.


This blog, as the Chaplain who just came by to check on me noted, Is my coping mechanism. This is the way I try to preserve that last piece of my psyche that does not want to conform to the Invasion of the Body Snatchers with their clinical matter of fact way of dealing with things. This is the part where the last part of me dying to stay human has tried to help me not fall into a pit of despair.


A story of anguish is not unique. We all have our struggles and journey's and unfortunately some of us have harder stories to tell than mine. But I hope that if I am able to help anyone I do. And I hope that all of you know that you are helping me. At 4AM when the world is just beginning to stir I get to see your kind words, and prayers, and although I am usually here with Jason alone - the world seems less lonely. I have an army that is behind me and giving me the strength I really don't have. They cheer on Jason and I have no choice but to join in because that is MY BOY. And I am happy that the little boy I love with all my heart has the support of so many - strangers even  -who want him well and to succeed in life.


The security guard refused my ID today when I returned from Starbucks.
"I know who you are." he said, not looking at me. He grabbed a pass and scribbled Jason's room on it. "You are a damn good mom. You are here everyday, all day - the entire security team knows who you are."


God delivers the right time all the time. You have no idea what those words meant to me.
Especially today.

Halloween 2014

I had a baby lion, a princess and a wardrobe conscious kid who wanted to hang out with his friends and eat his little brother's and sister's candy. If I could go back to that day and hold all three of them closer on this night I would.

Good News - Because We All Need To Focus on GOOD NEWS

Jason's surgeries were successful...


Jason is stable/healthy enough to start second wave of treatment...


Team is optimistic Jason will do well...


We can realistically ask for the miracle that he is talking by Christmas...


Keep the faith.

Keep the prayers up.


I am going to recite this post to myself all day.

So They Tell Me

I am a good liar. I know I am. I walk pass people everyday, who know I sleep here, and who know I am wearing yesterday's clothes and I answer them when they ask how I am. I lie and say, "I'm ok, how are you?" Because that is what you are supposed to do. You are supposed to look someone in the face smile and lie every morning because after a while people get desensitized to the tears.


I have given them all up - each of the seven deadly sins in my humbling repentance to save Jason.  Lust, gluttony, greed, sloth, wrath, envy, and pride - poof all gone. No where near me. I am as humble as JOB because I so desperately beg for mercy I don't dare hint at any of those things. Sometimes I am terrified that I have become prideful once again by playing the little game these doctors and nurses who look me in the face and ask me how I am play. I look them back in the face trying to hold a steady gaze, trying to hold a tight friendly smile and trying to give them back the enthusiasm they give me. I hold it in, and walk away and cry now. I don't do it in front of them.


Jason got a tracheostomy today. Look it up. It is too painful and too sorted to write out why I do everything I do. I know the details, and I know why and trust that every decision I ever make is to ensure my son gets the best he can get. It's reversible and it is for his own good. While it sounds like he is getting worse, this move is somehow making him better - at least this is what they tell me.


I just saw his face. His beautiful scraggly beard baby face. I have not been able to see it for the last two weeks because for the ventilator they had to muzzle him. This horrific disgusting muzzle with big brown patches on either cheek they secure to your face while your mother watches and fights the urge to jump across the bed and choke the shit out of the person from respiratory who is putting this on him emotionlessly. Now he has a face, and nothing in his mouth and he looks so much better and is allowed to feel better too. I thank God for every grace and every blessing, and forgive me for being greedy but I still stand in line to ask for more.


He also got a stomach Peg. He can start eating immediately and this too can be reversed. But for right now he has a direct line going into his stomach. I have been trying to function normally. Trying to be grateful and happy that things are going well. Trying to return the smile from the pretty doctor who is excited that he is in such great shape he can start chemo tomorrow. I am trying. This is all good news right? This is all things going in the right direction to get him better and over this. I should be excited about chemo.


He is laying there in bed  - with his complications, and his strides and his 'getting better" parts that get the medical team excited to proceed and his mother is just standing there not so excited, trying not to be so sad. Instead I am terrified? I am scared shit. He is entering unchartered territory and crossing the point of no return. There are no assurances - there is hope and God and miracles. I believe and I trust but I am human.


I am imperfect.
I am flawed.
I am terrified.

Scary Things That Go Beep In the Night

Last night Jason slept soundly. No crazy Las Vegas style activity as in most nights. I slept with a combination blue chair and grey chair and I actually got 4 hours solid. I feel guilty saying that. He was right next to me and I slept through 4 hours. But that is how good he was. He didn't chime or ring or need anything the entire night. Each vital check was done and he slept through them on his own. Minimal sedation. He was not completely drugged, and he didn't need anything extra. I am happy about this and terrified because quiet does not always mean good. I am scared. Scared to get excited when things start looking up because I feel like a plane on fire. I feel like if I do it, if I fall into the euphoria of something good the bad will hear me celebrating and show up to the party.


Jason got another complication today. A bedsore. Christopher Reeves died of a bedsore. A bedsore could be serious. I feel like I am here everyday and I leave out of respect when they wash him and I didn't do my duty as his mother. I should have hovered like a drill sergeant inspecting every inch of his body and making sure they washed correctly, so that I will know nothing is wrong.

I will do that now. I am NEVER leaving now. They can kiss my ass a thousand times when they want to do a procedure. The only room he is entering without me is the Operating Room and I am making a stink to make sure there is no loophole to get me in. ALL ELSE, EVERYTHING ELSE they need to do they are doing in front of me. Procedure can kiss my ass.


I am scared. I am really, really scared. Every time I get slightly happy. Every time there is a slight calm its like I am inviting disaster. It's little stupid things like this that could end the world. Little dumb insignificant things that can cause a problem. He has an open sore in a hospital full of fucking staph.


Whenever I wake up I try to keep my eyes closed a second longer than need be. I try to will myself to life before all this started. But then a machine beeps or chimes and before I open my eyes my heart sinks because I know where I am. Why won't it stop? I am paying my dues. I am suffering. I am really suffering. I just want him better. I don't want anymore hiccups. I want this stress test to end already. My heart can't take this. I can't take it.


I want to just fall on the floor and cry hysterically for all this shit to stop.