Take Yourself to Breakfast

Epilepsy Awareness Month. Day 6!
When all else fails take yourself to breakfast and quote a great song!

“It’s always tease, tease, tease
You’re happy when I’m on my knees
One day it’s fine and next it’s black
So if you want me off your back
Well, come on and let me know
Should I stay or should I go?”
-the Clash

It’s a bit maddening, this epilepsy. One day is fine the next is black, and sometimes the next and the next, and then it’s fine and then it’s black. It’s a big tease..and not the good kind!

He was down to just a few seizures a week, maintained emotional regulation, steady cognition, and even after school tennis one day a week. But the slow decline from the stress of moving, the toll of school, and this crazy diet that gives him reflux and worse, we’re now back to 4-6 seizures a day, major emotional outbursts, constant stomach aches, and a general state of feeling bad. And there’s very little we can do about it but move meds around and wait. It’s just his life….right now.

There are magnificent days! But the madness lingers and all I can do is control how I handle the waiting, how I handle the process. I HATE waiting. I try meditating, I try working out, sometimes I try shopping. I take such hot baths I almost pass out. I try not to cry. I get pissed off hoping the action of anger will help, and then I succumb and realize it won’t…and cry. I try everything…except drinking. I can’t escape. I have to be ready. So I have to control how I handle the waiting. I’m at about 40-50% success rate right now which is way better than I was 6 months ago!

I used to force myself through these times like a starving tiger on the hunt. Too tired to persist but too hungry to stop. Now I slow myself down and try to live in ten to twenty minute increments. And I treat myself. I never used to, but I do now. I treat myself with respites to breathe and be before resuming the hunt.

Thank God for breakfast at Parc! It’s my favorite place because when I’m there I feel like the me I thought I was going to be. Free and a little bit fancy, enjoying my perfect French tea. It’s not that I resent or hate the me I am, but when I can see the trees and watch the people go by I can once again think and dream. I can pretend, for a moment, it’s all not such a tease. In those moments, I’m just another city livin’ woman after drop off eating breakfast by the park.

Should I stay or should I go? I’m not going anywhere! But if you can’t find me, I might have snuck off for a quiet cup of tea!

Dream Big, Baby!

Epilepsy Awareness Month. Day 4!
You can be anything you want to be….except that.

Trying to be a positive, well researched and mindful role model while constantly PSAing Mr. Roger’s-like life lessons so that my kid is set up for a successful happy future is an impossible task. But trying to secure Buddha’s future with the uncertainty and constraints of epilepsy is a flat out exercise in futility. Not to mention a testament of my control issues and ego. I know this, but yet I can not stop!

As a teacher, I have noticed two bold styles of parenting when masterminding this future dilemma. No matter what we say, we all do it one way or the other. We tell them to dream big or dream real! We tell them they can be anything and nothing is out of reach. Or, we tell them to use their smarts and their hearts to navigate the unfairness of a base world where unavoidable cruelty will inevitably find them.

As a mother, I am constantly batted against these two choices and left feeling like I have somehow let my Buddha down.

I, by default, fall into the Dream Big category. I believe in always leading children to trust themselves and go after what triggers their souls! But I am afraid too. Isn’t it my responsibility to help light the way so he sees the reality of it all? How do I tell him that sometimes, most times, dreams don’t come true, knowing then they never will? How do I slowly show him the world without it breaking his heart? How do I let the world break his heart but help him believe in himself enough to rise above it and reach his dream? How do I let him live his own lessons and grow in his own spirit and life without being a neglectful parent?

And please, PLEASE, do not say the word balance?! I know it’s all about balance. Let me know when someone gets that bottled:)

In my experience, children don’t think about their futures in the “means to an end” sense we do. They live in the moment and want only to have futures that reflect their immediate and most internalized needs for safety, fun and attention met with as little push back as possible. They don’t realize that pretending to be a star or a doctor, an inventor or a truck driver, or even Magic Saver Girl (that was my best dream) is already identifying that basic human need we all have to find purpose. Playing through passions that are as light and fun as their shifting attentions is their idea of the future. It’s enough for them, and I think that IS magic.

From the time he was two, Buddha wanted to be a famous hockey player. He wanted to feel the power of the crowd and be the fastest, best goal scoring guy on the ice! He never stopped playing hockey…until he got epilepsy. He still loves it and thinks if he works hard enough and practices long enough he can be that famous hockey player. The problem is, he doesn’t have near the stamina or stability for hockey. Not to mention that getting hit and crunched against boards is beyond dangerous for someone in his condition and a liability beyond plausibility.

So what do I tell him? What do I do?

Be Real or Believe, that is the question.

Because does he really have a shot at becoming a professional hockey player?

No. No, he doesn’t.

When Buddha decides he’s going to do something, there’s no stopping him. It’s one of his best and worst qualities. It’s a humbling and proud moment when I hear him giving himself pep talks. “You can do this, Mitchell” he says. It’s awesome! I want him to believe anything is possible. I especially want him to believe it because I know that depression, anxiety, self medication, and suicidal thoughts are 1-5 chances higher in children with Epilepsy than other children between the ages of 5-15. I want him to know it’s hard AND believe he can get through the challenges!

I believe that if you put the energy you crave into the world it absolutely comes back. But, I also believe that how it comes back is not within our power, no matter how much I try and force it. I believe in hard work, determination, and passion. But I also believe there is a difference between following a passion through creative process and destiny. I have watched too many children grow up to not believe in destiny.

So what do I say? “Honey, you can be anything you want…except that”?

I’m constantly tweaking my position on this, but here is where I’ve landed today:

I do not tell him he can’t be a hockey player. I do not tell him he’s limited because of his condition. But, I don’t tell him he Can be a hockey player either. That might be wrong, but that’s where I am right now. I worry that if I don’t tell him he can then maybe he won’t put that energy specifically into the universe and I will be squelching his potential. I have been told that the more specific the energy the more chance you have to accomplish your dreams. But I will not lie to him. I just won’t. And for me, at this moment, the truth is he will never be a professional hockey player.

Instead I tell him anything is possible with hard work, trust and a little bit of luck. I applaud his successes and his failures. I tell him his condition is real and will help him discover his true strengths that will lead to his destiny. I tell him to listen to his body and look for the signs.

I tell him to dream big! The bigger the better! I tell him he has epilepsy but he’s good and worthy and wonderful.

I tell him the future is within his grasp but not in his control.

Maybe the person I should really be telling is me!

Life Goes on With or Without Seizures

Epilepsy Awareness Month. Day 3!
Life goes on with or without seizures.

The motto in our house is, “everyone has their sh*t”. Ok we say everyone has their challenges, but I like everyone has their sh*t better. We believe that no one gets out of life unscathed and everyone has something! But, we also believe that’s it’s a crazy beautiful, magical miracle we’re here at all and we try really hard to focus on the good, be grateful, and stay in the moment. TRY! Not always do, as there is apparently a lot of frustrated growling in my house done by yours truly, but TRY!! And somehow through it all, Buddha is the most empathic kind little soul. He amazes me every day.

Some days, the sh*t really piles on though, as it does for everyone, and we can’t just stop and reset because it gets too hard or because Buddha has epilepsy.

This morning my son-my smart clever, trouble-shooting son-swallowed a lego that got lodged in his throat.

Yes folks. It has happened to us! He swallowed a lego. He was shaky from his morning seizures and using his teeth to separate pieces (bad example mom) sent a lego dragon-claw barreling down his gullet.

He’s FINE!! He never stopped breathing completely and finally swallowed it, with no small amount of pain and gasping I might add, but at least continuously breathing.

The good news, besides obviously not choking and losing air, is that he didn’t seize during the ordeal.

We ran to the fire house, thankfully across the street, and after getting some good poundings on the back, a seat in not one but two ambulances, a totally cool x-ray picture, and an awful 2 hours in an adult ER that smelled like pee, he was ok and we were discharged…with no seizures.

Now, he had 3 last night but he made it through this morning like a the champ he is.

I guess he learned his lesson because he came home and went right back to playing with his legos. I feel like I’ve been swallowed by a dragon.

But, life goes on with or without seizures. Thank God!

Refractory Epilepsy

Epilepsy Awareness Month. Day 2!

Refractory epilepsy simply means seizures that aren’t controlled by medication, and to be diagnosed with epilepsy one has only to have two or more seizures. That’s it, any more than one and you get the prize. It doesn’t matter how the seizure presents or the cause. Just have two or more and BAM! Apparently, or at least according to the first ER doc to see our little man, “everyone gets one!” After one, however whether because of injury, genetics or otherwise, the patient is officially diagnosed with epilepsy.

For most people, one med is enough to keep them from ever having another seizure.

For my son, nothing has worked to stop his seizures. Refractory epilepsy is his official diagnosis.

There are different types of seizures. Some are caused from injury or detox. Some are caused by genetic disorders or come in combination with other conditions. And then there are those cases in which there is no earthly knowledge of cause. As is with Buddha, we are waiting for science and it’s noble doers to catch up and rescue him! God knows they’re trying!!!

Buddha has a handful of seizure types. Tonic clonic, generalized, partial, myoclonic jerks, absence, and subclinical. Everyone has the potential to seize but most people’s brains have mechanisms put in place to stop the firing from turning into seizures. To prevent misfiring when the body doesn’t have those mechanisms in place, there are hundreds of medications people can try. Although most are just variations of the same handful of drugs created to work by how body’s metabolize the chemicals. There are also no drug trials for children’s Epilepsy drugs. Kids are always growing and changing so there’s no way to set a baseline. Its all trial and error. It’s a clumsy dance in the dark where we hope to find a positive connection…that doesn’t lead to a spark.

For most people one med is enough to keep them from ever having another seizure.

Because Buddha’s epilepsy is refractory, he has to take many different kinds of meds and consistently switch to new ones as his body works around the seizure fighting components of the latest and sets his brain ablaze yet again. Finding the right combination is like winning the lottery. Let’s just say, the odds are not in our favor.

Buddha’s seizures, besides being debilitating and dangerous, cause development delays and emotional outbursts laced with anxiety and confusion. His medication causes behavioral side effects, metabolic side effects, fogginess, confusion, exhaustion, attention issues, emotional regulation issues, and more. He is also on a diet that keeps him from eating ANYTHING normal and gives him intestinal issues and acidosis if not maintained perfectly.

Even with all this vigilance, his brilliant team of doctors, the miracles of today’s modern science, of which there are many, and the constant maintenance by us and his caregivers, he still seizes almost every day.

When his body metabolizes his meds, they either make him toxic or his body burns through them in a way that renders them barely effective. We’re out of meds to try at this point, so we mess with dosages regularly.

That is the short hand version of his story.

THAT BEING SAID, he is at home and not in the hospital! So, thank God for the benefits the meds do provide, even if they can’t stop the seizures completely. He is home, he has friends, he is learning, he has fun, he ice skates and plays baseball. He smiles and he knows he’s loved. He knows he’s good! He knows that he is a good person who did nothing to deserve this.

At least I hope he knows that! After my prayers for a cure, It is my greatest wish.

Somehow, he gets up most days with a smile on his face and super powers in his back pocket. Some days are even really good and he makes it through without a hitch.
It’s not a normal life.

It’s not an easy life. It’s not as bad as it could be…as it has been in the past.

He’s alive and he’s amazing! And even though he swallows handfuls of meds every day, even though he’s often confused and his “brain is going backwards”, even when his heart breaks with overstimulated taxation or he has trouble carrying on a conversation, he never gives up. He believes he can do anything!

He still seizes almost every day.

Fake It ‘Til You Make It

Last night was a rough night. Not the worst, but a bit awful. Buddha was restless and sad with nightmares, agitated and confused with seizures. We were up and down the stairs throughout the dark, new day hours, shuffling to be alert for him but pretending to be asleep so we could attempt the day. He ended up in our bed just as the sky began to light with the reminder that life doesn’t stop for seizures.

This is what I refer to as a Fake It ‘Til You Make It kind of day.

I will put on some cream and fluff up my hair. Hopefully I will remember to brush my teeth. I will lift my voice to smile my good morning, and I will tell my son how proud of him I am for making it to school. I will acknowledge how hard it is to be a kindergarten teacher as I give his a companionable wave, and I will fake it. For him, for me, for hope, I will fake it. I won’t do it all day, I’ll have to lie down a bit at some point, and I’ll be really glad when the day is over. But for the rest, I will fake it.

It has taken many years to accept this Fake It ‘Til You Make It motto. I have self-worth issues that don’t care about intent or that my son is sick. My Odyssey arrived in boiling waves from which I may never cool and learning to fake it here and there saves me, at least on a day-to-day basis.

As is with any valuable test of character, if you work through the hard parts you do end up wiser, humbled, and more grateful. I have also ended up fatter, sadder and more tired, but I am definitely humbled, and I am, without a doubt, grateful for every precious moment. I’d like to think I’m also a bit wiser. I try to keep my eyes on the sky so as to not get dragged down into the blistering tide, and I have learned that, sometimes, to get though the hard stuff you just have to relax and pretend you know what you’re doing. IE: Fake It!

Here is my history with Fake ItTil You Make It.


20111108112421_00113A

I knew it, I knew it, I knew it. Damn it, why didn’t I trust my gut? Since that defining moment on the stairs at fifteen, I have known the infamous Fake It ‘Til You Make It motto is a crock.

I was leaving for yet another pep-talked, face your fears and express yourself, socially terrifying day of high school when my mom stopped me mid step with one simple but scarring sentence. A sentence I bore nobly as I carried those burdensome six words with me until…well, last week. She worried about me, was confused by me, and, I think, a little embarrassed of me when she said,”Is that really what you’re wearing?” I either try too hard or don’t care less. I’m either over dressed or barely dressed at all. It’s my thing. That day I had on what I thought a creative, let’s say theatrical, ensemble. It was, obviously, not the typical wears of a Newport Beach High School Student, but when you already feel unremarkable in an all too remarkable high school, this is probably not the best tactic to help your daughter feel likable.

Hard Polish honesty she calls it, and she can’t help it. This was her way of hinting, not so subtlety, that maybe letting people get to know the real me before swamping them in my creative effusiveness was a more effective social plan than puking my need for approval all over everyone in my path. I guess in all fairness, I’m not very subtle either. Self reflection aside, I plopped my foot down aghast and threw a perfectly timed hand-on-hip-smack pose. I sighed my reply through clenched teeth and said, “I thought the point was truth. I thought I was enough for people to like me for who I am!” I wanted to scream at her, “Make up your mind! Either they accept me and like me for who I am because no one should change for someone else’s approval, or I should change my clothes immediately because no one could like me in THIS outfit, even though I am a perfectly likable person.” It was beyond confusing.

She said, “Yes… Buuuut..” There’s always a but. Why is there always a but? “You don’t look like you like yourself,” she said as I shifted defiantly yet defeated down the stairs. “You just have to fake it ’till you make it, baby!” I’m sure she said she loved me as I carried my hurt out the door, but…

All I heard was the “but…” All I remembered were those six cursed words. And worse, faking it felt like hell! It felt like a lie, like a major betrayal to the angsty teenage existential journey I had every right to suffer through. Didn’t I have a right to ignore, explore, discover, and design the me I was going to be? That is, if I ever escaped remarkable high school to have a chance at becoming anything but insecure and unremarkable me?

It’s a piece of crap motto.

It’s complicated. Confidence is complicated.

IMG_2893

For a little more background I will concede to the words of my grandmother, “Consider the source”! It makes sense this silly phrase has kept me tied up long into my adult life. I was always a big feeler and easily hurt, a young soul with a wise beyond her years body of experience and keen observational powers, but absolutely no innate logic to back up and organize the collected emotional data. Let’s just say, I forged my own path. I have perfectionist issues. My therapist is working on them.

My dream was to be a great actress, and not just because I liked the spotlight since that’s pretty obvious. No, it was so much more. I wanted to be more. Acting was bigger than me, it was a pull I couldn’t explain, a calling. I was going to explore and illuminate the human condition to make the world a better place and offer a real glimpse behind the looking-glass. I was going to always live in the moment as my most authentic self, and so by doing prove my worth while enchanting the atmosphere of those around me to a breathable rosy glow! I was going to be remarkable. I wanted truth, fairness, and right above all else.

You can see how faking it was a shameful, unforgivable surrender for which I didn’t deserve to suffer.

With my spiral permed hair, crazy powerful belt voice and stellar hip slinging abilities, I couldn’t fathom the point in faking or holding back my feelings. I was desperate to believe true friends love you for who you are not how you look, and that success comes from intent and heart more than vanity. So, I left the house, many times over, in a bold statement of individuality, crazy hair, mismatched fabrics that couldn’t pick a season, and, most likely, foundation lines wrapping my jaw line.

So, I left the house in a bold statement of individuality, barely brushed hair, conflicting fabrics that couldn’t pick a season, and, most likely, foundation lines wrapping my jaw line.

I knew it then as I believed it still many years later, it’s a piece of crap motto. And I tested that belief, full out until it broke me. Until I finally realized that not everyone deserves to think I am remarkable. They simply aren’t worthy my particular remarkableness.

Last week.

actions quote


Twenty some years later, standing on the other side of that particular existential journey while knee-deep in yet another, I have begun to once again pick apart the pieces of those six words and what they mean to this version of myself. Now, after this last year of hell I fully appreciate its benefits. Now I see that Faking It ‘Til You Make it doesn’t actually help you make it, it simply holds your place until you do. I can accept and appreciate the idea that how you present yourself is a testament to your relationship with your inner voice and should be exhibited with appropriate respect due someone who is still standing.

This means work, lots of work being done in the background. And it means time. Lots of time to let yourself feel and heal and rest. Faking It also doesn’t, as my younger self believed, actually mean you are laying a foundation on which the stones of Making It are built. It just means you’re faking it. That’s it. The part I missed was that, that’s OK. At least you’re doing something to get yourself off those stairs and out the door. Because on any given day you don’t 100% know what awaits you in the outside world. Sometimes, faking it is the best we can hope for to hold our place until we can make it home to ourselves.

It’s still a piece of crap motto, except when life breaks you down in ways you couldn’t possibly imagine and as you meet the many different versions of yourself you will become over the 20-80ish years of your life, and you finally understand it’s not just about your own angst but global angst, and worse, your child’s suffering. Then the “but” is sometimes all you’ve got. Then, it’s time to take the Fake It all the way until you Make It! Until you like what you’ve made, or at least can live with it.

It’s a piece of crap motto until the hurt piles up and you realize it’s actually a life line disguised as a meme.

20111108131833_00033A

Fake It ‘Til You Make It baby. At least you’ll still be standing. And to stay standing is the first and most important goal. Survive first, help your child survive, then figure out how to love yourself. Maybe those last two are a tie but I don’t know any mother who worries more about her own self acceptance than her child chained to a hospitable bed. For that matter, no mother whose child is getting bullied, getting hurt or falling in love would put herself first. So, survive first, love yourself next and everything else is a miracle. Remain standing, for as long as you can.

There are those who “Make It”, standards to aspire. Even as I know they too have doubts, there are those who harness their power for good but aren’t ass holes. Those who actively contribute and believe that life is more, much more, than defending oneself against a boiling tide, or preparing for the probable zombie apocalypse. They know it’s not for us to see the grand plan. (FYI, I have been informed that if the zombie apocalypse does come, I will be thrown to them first as an escape opportunity for the rest. I am, apparently, too easily startled and expressive and will, for sure, get us all eaten. I can’t fake my way out of that one and I’ve accepted the sacrifice.) 🙂

There are those who make it home to themselves and truly live in the moment. They are the ones who know that This Too Shall Pass is the real motto and everything else is just a place holder. They know that Fake it ‘Til You Make It is a kind of OZ loading zone that keeps you safe until you discover you had the power to get home all along. And sometimes, many times, that power comes from simply surviving, so you have to Fake It ‘Til You Make It because This Too Shall Pass.

blacktie-tailgate-2016-10 copy

I, at least, now understand that if I’m faking it, it doesn’t mean I am a fake. I understand that by faking it I will live to fight another day, for my family and my son, and for myself. To appreciate my son’s milestones and be present for his struggles because I faked it when I needed to is now something of a badge of honor not a stain of lacking.

I feel in, now, coming to more realistic terms with this thorny motto, I will move forward on surer feet and that I am remarkable in my own little way. Maybe it will even help me survive the zombie apocalypse my husband is sure is coming.

I have made it so much farther than I ever thought I would and ended up nowhere near where I expected to be. I guess faking it is enough until you make it, because, although, maybe home has been with you the all along, it’s a hell of a trip.

Now when I need to, I Fake It ‘Til I Make It. I fake it because nothing lasts forever, and because This Too Shall Pass. I fake it because a placeholder is better than surrender, and because it feels really good to finally get home.

Parenting the Parents

My saving grace at surviving parenthood is support, the advice and experience of others who have also made gigantic mistakes but survived, and better yet so have their kids. Sometimes it’s the earned wisdom of “elders”, sometimes it’s the learned knowledge of new sciences and studies, and sometimes, now and then, it’s my gut. Most days I feel lost, unsure, and confused. We try really hard for at least a few smiles each day, no matter how bad it gets, and always gratitude, but there is also always that feeling of being unsure, at being weary of the next corner. Some days deciding if I want coffee or tea is too overwhelming a decision to make I am so bogged down by the emotional reactions I have to sift through and the major decisions I have to make as a mom. Yesterday it was do we give him the two enemas or not. Good Times. So, even with all the support out there, I wish I had on site professional parents to parent me as I pretend to know how to wisely parent my, smart, funny, tough, kind, beautiful and sick child.

IMG_8851

I find this much more difficult because Buddha always seems to be in and out of the hospital, getting poked prodded and run around like a test monkey, not sleeping well or sleeping too much, seizing and recovering, constipated from his diet, or crying because his friends don’t know what to do with him when he’s well and then sick and then well and sick again. Or, he goes just enough days without incident that I let my guard down and BOOM! Those are the really scary days. The balance is exhausting. And all the while I’m trying to give him opportunities to develop his own self-worth, help him flesh out his passions, instill a sense of responsibility, and, oh I don’t know, maybe give him a happy childhood?  Geez!

Where are the rules for us?

Who is parenting us? Who is making sure we’re not totally screwing them up so that just when we, maybe, get them healthy enough to enter “life on their own” they are not nailed back down because of issues, insecurities and immovable obstacles we created in them trying to save them? It’s endless!

How do I prepare him for a grown up life when I feel so unprepared for mine?

As parents we have playdates to practice our parenting styles, spreadsheets to track growth and progress, Instagram to document how damn cute they are, and FaceBook to discuss everything from potty training to getting bullied in school. Add an illness to this mix and we are now running a 100 mile marathon naked while being shot at, up hill both ways…..in Antarctica.

IMG_8707

Lucky for me I think I may have hit on something helpful. My husband. No, I didn’t hit him or hit on him (there’s no time for either) but upstairs today as I was taking out our Valentines decorations, pretending we didn’t just spend the last two days in the hospital and worrying over this new cough, and he was downstairs playing hockey with Buddha, I realized that of all the hats we have to wear as parents of a child with a “condition” one of the most useful, if not the prettiest, is that of a parenting facilitator.

He is there to say, “Hey are you ok? You’re being really rough on him?” And I am there to say, “Hey boys, 3 games of hockey is enough, Buddha needs to rest and drink some water.” I kid a bit of course, if it wasn’t for Dave I’d have every second of every day planned out for some healthy educational or inspirational, fun activity. He is my balance if not my reason for rolling eyes and dramatic head-slaps.

My point is that we are learning to communicate with each other in a way that not only brings us closer together and makes us better parents, but it gives us a sense of comfort. We don’t feel so alone anymore. Because this journey has made our lives more complicated and difficult than we could have ever imagined we are vigilant about seeking out advice from the pros along with trusted friends and family. And they have been invaluable, literally saving me. But it’s still left to us, day in and day out, to be what Buddha needs to keep him physically and emotionally alive. We are there to remind each other of the steps that work to calm our son or help him through a problem. We are there to give each other a break when the other one gets to a breaking point. And we are there to hold each other accountable, to remind each other or advice each other, to help each other. I’m even taking criticisms a bit better….a bit. This success all stemmed from a necessity to be better equipped to help Buddha grow physically and emotionally. We didn’t have a choice but to be there for each other if we wanted to be there for our son. And we are better for it.

But most importantly, I’ve seen a positive change in Buddha. He is less likely to scream and hit, his emotional vocabulary has grown and is being used more naturally, he has a deep empathy that blows us away, and his disappointments have gone from defcon nuclear to mildly overdramatic. (Because of his seizures his emotional filters are not as developed as they could be so big feelings can be a big problem for his spirit.)

The irony is that if Dave speaks to me like a child I will likely slice him through with a look, an active ignore, and later a tirade. (I don’t believe in half measures.) However, without him as my parenting reflection I would still be lashing out at Buddha in attempts to bury my fear for him. My demands would still be painfully unrealistic and I would be enabling him more than I already do. Dave would still be spoiling him more than he already does or nit picking his every move. The balance is still exhausting, but it’s not as hard when we do it together.

We were not this cohesive before Buddha’s illness but now when we can reflect each other’s fears in a loving way we parent each other’s parenting so that we are more confident, if not better, parents. That may sound new-agey, but thank God for it! We are learning what Buddha needs by helping each other name our fears and counter them with love and communication. (We have a lot of therapy.) But it’s working! It’s helping. It’s even strengthening our relationship.

Necessity is the mother of invention, as they say, and until Rosie from the Jetsons gets here to pick up some of the slack and make me mother of the century, I am grateful for the knowledge of all who have come before me but mostly for Dave. I am grateful that Dave and I will continue to help each other be the best parents we can to the best kid we know.