A Motto That Matters

The Mayo Clinic Hospital's admission packet notes this: "Our primary value-the needs of the patient come first-is a commitment made every day by every employee." This month Michael spent four and a half days as an in-patient there following a referral by his San Diego physician for a SPECT scan and an overall review of Michael's history in an effort to gain more insight and come up with a treatment plan that brings some relief from the seizures that have overtaken his life in the past year.

We don't know the results of the tests yet. We DO know this-our experience at Mayo was unlike any other we have had in navigating the health care system during the last few decades. I have been a part of health care systems that seek highly paid consultant groups advice and create new vision and mission statements rolling them out in glossy brochures and banners proclaiming this is what we believe NOW or for several years until a new regimen invites the services of yet another consulting group to reshape or shake up the temporary belief system. Employees typically don't buy into these administrative efforts to change an organization since they recognize this too shall pass.

Barry and I had numerous discussions while we were at Mayo. Why were we so impressed? What was so different? One day I said, "it's more than a motto. It is TRULY the culture of the organization; they walk the talk." Every  person we came in contact with exhibited via words and actions that Michael's needs (and ours as an extension of him) did indeed "come first." Registration staff, cafeteria cashiers, physicians, nurses, anesthetists, pre-op and recovery staff, housekeepers. Every. One. It's so simple, really. After all, hospitals and health systems exist for one reason don't they? Or they did. Once upon a time. The Mayo brothers and their father got it right many decades ago and their legacy lives on. Did you see when I posted the quote of Dr. William J. Mayo? "The best interest of the patient is the only interest to be considered." How did many of our modern health care systems stray so far from that basic tenet?

Lastly, I want to address the environment. I'm a nurse. I've been in many hospitals in all parts of this country. This hospital was the cleanest I've ever experienced. Spotless. Michael's room was quite large. The recliner provided for anyone wishing to spend the night was comfortable and easy to convert to a bed. The belt that was applied lightly to Michael's waist while in bed had a lock that only staff could access thus assuring there would be no venturing out of bed unmonitored. The Lift and Track system enabled Michael to walk and exercise and enter the private bathroom in his room ALONE while the staff who managed the lift talked through a crack in the door. Had he experienced a seizure while in the vest connected to the lift, a mechanism would have suspended him in air to avoid injury until proper placement. How did this make us feel? It made us feel safe. Safe and secure enough to enjoy dinners out and return to our OWN room until the next morning. First time. Twenty-seven years.

Our stay was not without a couple blips and mishaps. But nothing that overshadowed our overall satisfaction that we were cared for and cared for well. As we end what has been a very trying year, I wanted to write a post that felt positive and grateful and gave me hope for the future. I have a plan. I'm on a mission to improve services to epilepsy patients a little closer to home. Wish me luck. And Happy Holidays to you and those you love.

Time Out

My friend Suzanne is coming up on a milestone birthday later this month.. She too has had a rough year---in fact, a rough couple of decades juggling some heady life issues and a busy professional life. Somehow, whatever she and I are going through we seem to find the right cord of caring and compassion to support one another-and that coupled with a very healthy dose of black humor helps us to get through some of the more challenging aspects of our lives.

So....the start of what I believe will be a protracted celebration (yay) began yesterday. Suzanne arranged a visit to a spa north of San Diego. She described it as the "Target of spas" so as to keep my lofty expectations in line, I suppose. Our friend Julie offered to drive and we set out at 7:30. Before I left, my Mom and Meaghan admonished me to relax and Barry asked that I not "boss from afar". The plan that I sketched for dealing with an emergency was that Barry would contact Meaghan and Meaghan could drive and get me if ANYTHING went awry. That plan was still on my mind when I got in the back seat of Julie's car. In fact, I was very excited to indulge in the day that Suzanne had mapped out from start to finish but there was that piece of me that couldn't let go of the what if. After we were on the road for 45 minutes, Suzanne announced we had another 45 minutes to go. I hadn't realized the spa was such a distance. That's the instant I resolved  to Let. It. Go. To intend and commit to relax.

We arrived at Glen Ivy at 9 AM. We were efficiently checked in by an engaging young man. I looked around at the great selection of clothing and beachwear in the adjoining gift shop. I could have spent some time there if I were not so eager to get to the  perfectly appointed locker room with the requisite marble and stone showers, dressing areas, make up counters, steam room and Jacuzzi.  A first impression-this place would be just fine-better than fine. Perfect. We changed into our suits and walked through the lushly landscaped grounds to the first stop---a Roman tub-like bubbling pool with epsom salts to soothe our muscles and warm our bodies for our upcoming massage experience. The beginning. Ahhhhh.

Next---my hot stone massage. Vanilla and tangerine scented lotion and the warm, soothing, smooth rocks applied with gentle vigor first to feet and calves and legs---then to all the dang stress spots all over my back and down to my fingertips. I think perhaps I let out a mini, low pitched sound or two but mostly I just lay still somewhere between an oncoming sleep and the wistfulness that this just would not end PLEASE. For several moments after my 50 minutes were up I didn't trust myself to get off the table. I was so relaxed my limbs felt like jelly. Ooooh.

Following another dip in the epsom salts we claimed our chaise lounges at one of multiple pools on sight to soak in some rays on what was a perfect Southern Cal day. Close to twelve, Suzanne announced it was time to hit the bar for a Pina colada and get a float for the shallow pool. We chose to float in beanbag-like "chairs" with an extra one in the middle upon which to rest our fully relaxed legs. We floated and floated in circles and every now and then touched the bottom to rearrange our sun and shade positions. We took in the plants and trees and watched a couple of very busy woodpeckers fly between several enormous palm trees. I tilted my head back and saw blue sky and mountains and those palms. Oh my.

Lunch was great-a little healthy, a little wine, a lot of chatting. Nothing serious really- but interesting. Julie asked "if you could take any kind of class what would it be"? The simple question caught me a little off guard. I first said painting. Then no---maybe flower arranging. Whoa. What would I really want to take? Some food for thought.

After lunch a little more lounging at our sunny spot by the pool and some deeper conversations about losses in our lives and how people aren't always what they seem but sometimes they ARE. Talk about our children--their plans. What we want for them. Sharing. Good for the soul.

Time for a dip in the mineral pool. The  sulphur smell permeates. It's warm but not my fave. It's a short dip and then we moved on to the mud pool. We stood knee deep in brown water and applied mud from a mound all over our bodies. The mud reminded me of dark caramel sauce and it was smooth and  cream-like going on. We all had that orange look we've become accustomed to seeing (can't resist) when we entered the  warm stone room where the mud baked on. Then -exfoliation with a towel and washing off in the shower. That was a LOT better than I expected. There's a bit of camaraderie with other spa-goers that perhaps is caused by the masking of how we really look or how we all look so much alike. Who knows? It was fun!

The finale of the day was our Grotto experience. I had worried about this when Suzanne initially arranged it. I wasn't sure I wanted to go underground in a Southern Cal mountain range. But as I announced on our way to the elevator to take us down, I was "too relaxed" to worry. Once in the grotto we were painted with a moisturizing lotion which had shea butter and coconut oil among an array of other ingredients guaranteed to soothe and smooth. We sat in a warm room to absorb the lotion then showered in another to wash it off. We sat in a cool room to close our pores while we sipped on hot tea and surveyed the room built underground many years ago as we each just seeped in the calm.

That would be the final treatment of the day. We went back to the locker room area, visited the steam room and showered and dressed to end our day. It was the end of the day at the spa, but not THE END. Thankfully, Julie drove home quite skillfully and pointed out when I remarked how dark it was, that perhaps that was an effect of the sunglasses I continued to wear. Relaxed. Have I mentioned I was relaxed?

We decided to forego a formal dinner and go to the bar of a local 5 star restaurant close to home. We scored a cozy corner table, ordered drinks and several dishes and continued to enjoy each other's company and bask in the prevailing feeling of the day: relaxation.

I wish this fleeting feeling of relaxation for all the caregivers I know. I hope they are lucky enough to have a support network similar to my own. Honor them. Not just this month---but all the days and months and years. Being a caregiver is at once the most demanding and enriching experience. Make no mistake. It takes a toll. May they all have some Julie's and Suzanne's in their lives.

Aaaaaaaah.

Customer Service

I talk to the great Customer Service Reps of my insurance company frequently. In fact, for the past few months I've spoken with them at least weekly, sometimes two to three times a week. But this week----well- this week, I have spoken with them  daily; sometimes multiple times per day. I want to clarify that when I say "great" it is not with tongue in cheek. The reps don't make the policies. The reps actually identify with a customer receiving bills of thousands of dollars from  providers after the insurance company initially denies to pay the claim.

This week:

We've been sitting on a $12,000 bill from a lab that ran tests ordered during one of  Michael's June hospital stays. When I inquired about why the insurer hadn't paid the bill I was told by Customer Service that the lab was "out of network". I reasoned out loud that we were in a network hospital of the insurance company when the spinal fluid was drawn and why on earth should we be penalized because the hospital's lab doesn't do said test. The Customer Service Rep (Mary) called me this week to assure me she is still working on this (it's been two weeks).Apparently the lab that sent us the $12,000 bill needs someone at the hospital lab to tell them to bill the hospital. Of course. I get it. The hospital pays the provider lab $12,000 then includes that cost (or more) as part of the hospital bill. The hospital will get paid. The out-of-network provider gets paid and the nice Customer Service Reps at the insurance company seem as outraged as I am by the amount of money billed to run 5 tests.

Another bill. This for three ambulance rides- just over $6400. It took the Customer Service Rep about an hour to sort through this one. Ambulance rides have a co-pay of $200. We're responsible for that-all ten rides. We're also responsible for what the ambulance company charged the insurance company beyond what the insurance company agrees to pay the non-contracted provider, in this case, the service that the SD Fire Department utilizes in response to 911 calls. We have no control, but we'll be paying the close to $400 not covered by our insurance for each ride. We're not going to go broke----but many could. I'm distressed once again by the shocking cost of getting to an emergency room seven minutes away---$2000 plus per ride. The Customer Service Reps are a bit astonished by the amount billed as well. What, I wonder, is the actual cost?

Barry called me the other day from CVS. He said, "they're saying the Felbatol will cost $2014-the insurance is denying payment". This one took several Customer Service calls, a preauthorization from the MD and numerous calls between the insurer and the pharmacy. I also needed to update the hospital system's registration as Michael is newly on Medicare with a supplemental prescription program from what is now his secondary insurer. (Note: this typing was interrupted by a call from the prescription drug plan leaving an automated message for Michael. Once his identity was ensured, an automated caller told us " the prior authorization request is approved for Felbatol"). Okay. Our co-pay will now be $3.60 per refill order once a month. Again I wonder, how does a drug that's been around for twenty-plus years command that kind of payment from the insurer? Their R&D money has long since be recovered. They just keep jacking up the price. And the insurance company keeps paying it.

I am truly grateful for the extraordinary medical care Michael has received during this hellish year but I have concerns that go beyond our frustration to get to the bottom of why Michael's epilepsy has spun exponentially out of control.

I am concerned that drug companies are charging ridiculous amounts for epilepsy drugs that have been around for over two decades.  I wonder as above, what those ambulance rides really cost to get my severely compromised, seizing son to the emergency room. I can only imagine the  charges billed for the in-patient stays. I'm pretty sure when I have a moment that I'm not dealing with Customer Service Reps, out-of-network providers, the remaining tests Michael is scheduled for and a little income producing work, that I just may ask to see an itemized bill or two. That should make for an interesting blog or ten!

Hanging on

I want to hang on to hope. I really do. We had a pretty good week---four evenings with no seizures whatever, one with three and another with seven. Then...Monday night. Twenty-plus seizures requiring a significant amount of Ativan to slow things down. It did.

Barry, Meaghan and I were running around to get the medication, the water, note the time of the seizures and wait for the moment of clarity in-between to give Michael the Ativan. Meaghan was muttering "PTSD" under her breath. She's right. The falls, the emergency calls, the ICUs, the intubation, the realization that no matter what we have done, we have been unable to stop so many seizure episodes during  this most heinous year. Yes, we are traumatized. I can hear it  in my voice, see it in their eyes. We are scared, we are scarred. We simply haven't had the time to regroup after one disaster before another occurs.

Most recently, we've had an eight week break from ambulances, ERs and hospitalizations. That's good and I'm grateful. But the dynamics around the kitchen table each evening illustrate the fragility of our psyches. Every dropped utensil, quick movement, bent head or even a throaty, hearty laugh results in high alert mode. When we realize it's not a seizure, conversation resumes but the fight or flight feeling lingers. It lingers and hangs over us, a storm cloud taunting above our heads.

We're a pretty tough group. We really are. We've learned a lot from Michael. He has persevered in so many situations, with so many obstacles. He remains hopeful, even adamant, that he will overcome this setback year as well.  And so....we too are hopeful. Always, all days-there is hope.

Dedicated to Dick

First, I must apologize. I knew you as Dick for nearly forty years so I just couldn't quite get used to your request a couple of years ago to call you Richard. I mean--- I may have called you Richard while in your company, but you were, are, and always will be Dick in my mind and in my heart.

We share your belief in the hereafter- that it doesn't exist. So I surely don't expect to meet up with you again in that "better place" that some who will try to comfort Sonya, will say you're in. You're not.

You're here. In my adult children who learned the art of discussion and defending their opinions on a myriad of topics around dinner tables in Poway, Del Mar and Vegas.

You're here. When we uncork a fine wine find. We remember the man who introduced us to the good stuff.

You're here. When I see an impeccably dressed man in perfectly fitting tan pants and a colorful sweater.

You're here. When I remember the career saving advice you once gave me. "Take it with a grain of salt" and "consider the source" have not been part of my vocabulary since.

You're here. When I notice the mute button on the remote control. When I hear a hearty laugh. When I think of all the dumb asses in this world (you were right!).

You're here. In happy memories. Christmas Eve's and Easter Sunday's and the year I forgot to turn the oven on for our lamb feast. The Napa Valley trips- The Sullivan's, the wine caves, the gourmet meals.

You're here dear Dick. There will always be a part of you that is part of us.

The I Word-Part 1

I had a feeling it was going to be different this time. The intensity of the first tonic seizure- the rapidity with which they repeated- over and over and over, the lack of awareness in between them, the glazed over eyes, the gruff, loud accompanying vocalization. It was just that much different. The paramedics and firemen noticed it as well. "This looks different than how they (seizures) usually are", one remarked. Followed by this from one veteran of the calls to our address to someone new to the Connolly 9-1-1 experience, "Michael is usually responsive and coherent between seizures".  Yes, for sure- this time is different.

When Michael continued to seize in the ambulance and then in the Emergency Room where copious
amounts of anti-seizure drugs were administered, and when the answer to the question of how long has this been going on is an hour, and when the vital signs clearly visible on the monitor are indicative that the patient is in distress, I'm not surprised to be asked if he can be intubated if necessary. Through tears and with an obviously distraught Barry by my side I hear us say in unison, "whatever it takes". When I hear the word Propofol (think Michael Jackson) it sends shivers down my spine, but I know they have to paralyze a seizing body to avoid injury when inserting the tube down his throat. I know all this but moments later when we are very kindly asked to leave the room and placed in a quiet, private area I am terrified of the prospect of Michael being placed on a ventilator. In nearly 27 yrs. of dealing with intractable epilepsy and multiple episodes of life- threatening status epilepticus behind us- this is a first.

We sit in that quiet room; me with tears streaming down, Barry with his head hanging low,
elbows on his knees, hands cupped over his face. I love this man who squeezes my hand in his- we
are in this together.

A nurse comes to gather us. She gives me a hug and leads us back to Michael who is now intubated, hooked up to a ventilator and getting EEG leads placed on his head. There are at least ten health care professionals surrounding his bedside- respiratory therapists, ER Attending, Resident and nurses, Neurology Residents and the officious Critical Care Neurologist who will run the show because Michael will be headed to the ICU. She announces to the room that if Michael's brain isn't sufficiently "quieted" by the current barrage of drugs, that he'll need to be transferred to her special unit in another facility. (Oh Jesus, I think, please, please, please brain be quiet). In 20 minutes all the neurologists remark how great the EEG looks. (Whoopee!) We 'll stay in the ICU just a floor above. The "bossy one"- Barry's words- will still be in charge but we're staying put in the place that knows us all too well.

The ICU team and several ER staff members prepare to transfer Michael- ensuring all IV drips, endotracheal tube and ventilator, nasogastric tubes and EEG leads and monitor are patent and working. Michael looks like a mummy. His head is wrapped in gauze from the top of it to under his chin to secure EEG leads. A large piece of flesh colored adhesive that is securing his NG tube is placed over his nose.  We can see his closed eyes, covered nose and the large tube protruding from his mouth anchored by adhesive patches on both cheeks. It is a frightening sight. Our son is hardly recognizable. We trail the staff , our son and the equipment  monitoring his brain and breathing for him to the ICU. We are calmer now. For a few minutes.

Not Today

"Do you think you'll be able to start the floor today?", I asked the young subcontractor. "Not today" , he said ,

and went on to explain that he booked other jobs when the delays caused by moisture and microbes and asbestos in our drywalls was "discovered" by the primary contractor hired by our insurance company. Any further words he said were a bit of a blur . Something about maybe tomorrow or maybe Saturday. Maybe they'll be finished next week. Maybe.

Maybe we'll go to Cleveland Clinic soon. Maybe. As of this morning Michael's chart has been on some doctor's desk for the past two weeks. Maybe it's the Director of the Unit. Maybe not. Someone's on vacation. The Director? Maybe.

Last night Michael had twenty plus seizures between 8 and 10 o'clock. The Ativan I reluctantly gave him at least kept us out of the emergency room. Maybe today will be a better day. Maybe.

I'm still sitting in my bed. I've made my fruitless calls to Cleveland and the contractor. I've written to a dear friend who sent me an email to let me know she was thinking about us. I've written extensively in Michael's electronic medical record to alert his medical team about last evening and get some bit of advice they might have.

I've cried and cried and cried. Mostly silently. Tears unleashed after weeks and months of frustration and fear and helplessness. A mini pity-party. It'll be over soon. A few moments to let it out and regroup. A few more moments in The Comfort Sheets. Then things will be better. Maybe.

June Gloom

The sun is trying to poke it's way through the June gloom today. Yesterday was very steamy so the gloom should be a welcome development. But there's something about the look of the gloom just lingering. A sinister look, I think.  Gray. Just hanging there.

Go away gloom. Go away.

Of Tears and Laughter

I cried silent tears for about an hour this morning. They started rolling down my cheeks shortly after Barry left the emergency room bay where Michael was  sleeping peacefully following the flurry of seizures we couldn't control late last evening. It was our second emergency call in a week that also included surgical replacement of Michael's VNS. So... I'm tired - and a tad more vulnerable than usual. So...when the two young neurologists entered the room and began to ask the usual questions and Michael performed A+ on his neurological exam; well --- I just sat here answering questions and watching Michael with tears streaming down my face. Screw it, I thought. Then, screaming inside while the tears plopped onto my sweatshirt- fix him!!!! God dammit, fix him this time!

When the firemen and paramedics arrived last night I noted several familiar faces. Surely we have met them all, this being the 6th emergency call in seven months. As usual, they were professional, proficient, courteous and caring. As usual, I hated that we had to make the call- that we needed them at all. Note to self- write the chief and drop some goodies at the station.

Michael's epileptologist dropped by. She's thinking we need to try a different emergency med. Maybe a specially compounded oral gel version of  Versed or something similar. Fine. I want to avoid these ER visits. But...... Why can't we figure out why this is happening? Why? Why? Why?

They must be sick of us I think. I wonder if there's questions about compliance with treatment. After all , Michael's a "frequent flyer" in the Emergency Room and many patients with that label stop taking their medications or have poor follow- through,resulting in more frequent emergency room visits. Perhaps that explains the call from an ER nurse yesterday. She wanted to know how he was doing since the ER visit LAST week  and if we had seen any medical provider since. I relayed that in fact we had. He had a surgical procedure on Friday to replace his VNS I explained, and added that I hoped that would keep us out of the ER for a while. Hahahahaha she laughs hysterically-- a mere 12 hours later. We're baaaaaaaaaaaaaaaack!

I drove Barry's car home from the hospital last night. I crushed the oil pans that are usually under it as I pulled into the garage. I left the car, closed the garage and fell into bed. This morning I woke up early to get here and relieve Barry. I crushed the pans again on my way out. Once here, we had change of shift report and he pecked me on the cheek. " I ran over your oil pans and I don't give a shit". Silence. A look. He left---not mad of course,  but probably not happy I didn't realign those damn pans. Only Meaghan gets how funny this really is--- so I called her. We had one of those hearty, guttural, disproportionate to the story kind of laughs.  And that's when tears turned to laughter and all was a little bit better with the world.

The Comfort Sheets- Chapter 2

The Comfort Sheets. I desperately need them again. The childhood memories- when all was well. When I was carefree--- oh how luxurious - to be Care Free.

It has been a tumultuous year: the death of a friendship, the death of a brilliant, funny man who was neighbor and friend for many years, the impending death of another longtime neighbor and friend whose wife is one of my dearest. And now this week, learning that another dear friend's daughter has breast cancer. All this in the midst of our house destruction and reconstruction and of course our foremost concern - the dramatic downturn in Michael's health and the inability of our efforts to achieve stability.

The usual suspects for maintaining some sanity (scarce as it is) - tap, family, friends, walks on the beach, humor in large doses, great food

and fine and not so fine wine have worked to a pretty decent extent. But sometimes I just need to curl up in those crinkly, wrinkly sheets and go back:

The sweet sound of my father whistling.

Dad teaching me to swim in the frigid water at Hampton Beach N.H.

The warm,stale alcohol smell of the bar adjacent to my Irish Tap class.

Making angels in freshly fallen snow.


Thank you sheets. I needed that.

Perspective

That's what I'm doing---putting things in perspective. I'm trying anyhow. It could be worse and I am well aware of just how much worse thanks to the epilepsy and cannabis communities I've been a part of over the years. I also know it could be a whole hellava lot better! And I know we deserve better. We do.

We cancelled our long-planned trip to Rhode Island yesterday. We were due to leave the end of May and book-end two weeks in a beautiful home on gorgeous Ninigret Pond with a few days at my Mom's home in Springfield.  MA. It's been two years since we made the trip. We missed two years ago because Michael was on the wait list for Charlotte's Web and we didn't want to lose out if/when his number came up. We didn't go last year because of the fear of traveling with Michael's CBD oil. This year my attitude was to go for it. I had a plan to ship CBD, I rented the house last October and we paid in full several months ago. I invited lots of friends and family to come and stay. We were so looking forward to it.

As November became December and we were still dealing with a rash of seizures and emergencies, Barry and I canceled our annual January trip to Paso Robles. We told each other in Michael's hospital room that things would probably be fine by then, but just in case. And January became February and February, March---- 5 hospital stays and 4 ambulance rides since November. And I began to think---when will we get back to where we were last October? When? And thoughts began creeping into my mind- Will we need to cancel Rhode Island? Is it possible this will still be going on like this? Constant vigilance? What kind of emergency set-up does a small beach town with a volunteer Fire Department have? So I started to be apprehensive, really apprehensive about going. I kept pushing dates out. If he's better by mid - April, then the end of April, then mid--May, we're a go. We arranged a date for his VNS replacement surgery that would enable us to have the surgery and the post- op visit just in time to get us to the east coast. The day before the surgery, we were notified of an abnormality in Michael's labs. Nutshell: postpone surgery, undergo lots of tests, rule out the worst things, sigh with relief it's an infection (which may or may not have been going on for a while). Could it be the cause of this months' long exacerbation of his condition? Did CBD keep it from getting worse, going systemic? We'll never know.

I know this. We're relieved it's not something else that's awful- refractory epilepsy is quite enough. I'm strangely relieved we won't be traveling across the country. I didn't want to be hovering, worrying, monitoring when we were supposed to be relaxing and having fun.

Michael needs to heal. He needs to get back to where he was when CBD transformed him. He'll get there. I know he will. Just not via Rhode Island . Not this time. Hopefully,the ornery infection will respond to medication. Hopefully, the VNS replacement will occur soon. Hopefully, in the middle of the chaos of our home's destruction and reconstruction, Michael will emerge stronger and healthier. Hopefully, I will emerge sane. 😉

The Comfort Sheets

During the last several months I've developed a fond attachment for a sheet set I purchased at Marshall's at a bargain price. They're not a high thread count. They don't feel silky or luxurious. In fact, they're wrinkly and crinkly. They feel crisp and clean.




They are my early childhood memories.

Sheets on a clothesline billowing in the fresh air and gentle wind.

The sweet smell of  ripe purple grapes in the arbor in our backyard.

The sight of the bright yellow forsythia bushes covering the chain link fence in our side yard.

The tart taste of the rhubarb growing wild along the side of the garage.




They tuck me in. They transport me. They renew my spirit. The comfort sheets.

At a Loss

I don't know exactly how to describe the last several months. I'm still a little stunned really, that Michael's seizures have spun so out of control and that all the tweaking of meds up and down and CBD adjustments have given us just a few decent days couched by days with horrific clusters, falls and near falls, and extended seizures. I am terrified that we can't seem to get this beast under control- that our original projection of returning to our imperfect, though blissfully better, normal within a few weeks of the November 3rd  fall has stretched into the final week of February.

I am convinced we will figure out a solution to this. I am most grateful I can even think that based on our past experience. We are working with an excellent neurology team and though Michael has been on over two dozen meds during the past 26 years there are still a few we haven't tried. I'm not adverse to trying a new drug. My goal has never been to be pharmacy free, rather it is to be seizure free (at least while awake) with a minimum of medication side effects.

Michael is weary of seizures, of having us too close by to ensure against more harmful falls, and probably just weary of us in general. We are weary too---of constant vigilance and reminders, of days where resentment toward us for trying to keep him safe and get him returned to baseline is the mood of the day, of watching his body writhe in the throes of an extended seizure or of seeing the aftermath of a catastrophic fall which we damn well know will land us in an Emergency Room and probably result in a hospital stay. Yes. We are all weary including my mother who has been here every step of the way since November 4th. She has long since stopped asking "how do you do it?" or remarking " I couldn't do it".  She accepts we do it because that's what we have to do. It is what it is. We aren't heroic, not better or worse than any other parents. We just want the best for our children. Period.

I lost it a little bit in Michael's hospital room this morning. I was totally discouraged by Barry's report of multiple seizures while awake last night. I rushed him out of the room and sat in a dark corner looking at our son and holding back the tears. Ralph, the EEG tech who we've known for years, came in the room, sat in the chair across from me and acknowledged the EEG wasn't looking any better. His empathy enveloped me and tears fell. He softly said he'd be back later. I allowed myself the luxury of a simple  cry. Then, our day shift nurse came in. She recognized us from our stay in December. "So- have things gotten any better since December?" I tried to reply but it got lost as I choked back tears. Shorty after that Michael woke up. "It'll be OK Mom".

It'll be OK. I'll hang on to that.