I no longer know how to love gently. The only love I know is fierce. Visceral. I love fiercely, but fearfully, not fearlessly; because it’s driven by fear.

I have come so close to losing my baby girl that I have a tendency to hold too tight to those I love. My children, my family, my friends, my partner.

My love is unyielding support and loyalty. It’s utter dedication and surrender. It’s all in. All consuming. Intense.

We face life and death situations weekly, if not daily. And we never know when they will occur.

So, I live every day acutely aware of the risk of losing my sweet girl. That hyper awareness of the fragility of life makes me fear losing anyone I love.

My hugs are too tight and too long. The words spill over, bubble out. I do too much. I care too much. I ask for too much. I am too much.

Haley may have epilepsy, but we all live with effects of it. For me that translates to a hyper awareness of time as our most valuable commodity and a commitment to grasping the most out of every moment.

Tomorrow isn’t promised. There’s not time to waste. Spend it on love.

We don’t talk enough about the statistics of divorce in parenting disabled children.

After the demise of my marriage I often lamented that one of the downfalls of my relationship was that I constantly felt underestimated by my ex.

I’ve done a lot of healing and self reflection post divorce and I need to acknowledge that I severely underestimated myself too. And that was actually the biggest limitation.

I thought I couldn’t balance a full time career and being a full time caregiver to Haley while doing both well. And I am not a halfway person as anyone who knows me will attest to.

I grew up relatively poor. My father abandoned us when I was 11. I was a teen mom. I had a second child at 22 and I lived in income based housing. I thought that I would never amount to anything. Society basically wrote me off. In adulthood I’ve realized that I was judging my entire worth based on the singular factor of how I contributed to the economy; my earning potential. My future was bleak.

Against the odds, in our early 20’s my ex husband and I stabilized. We found jobs post college, bought a house, got married, had another child (Haley). Life just went on. We made friends. I left my FT career, worked part time and committed myself to supporting my ex’s career advancement and contributing to our family in a caretaking role.

We coped with Haley’s diagnosis, challenges of parenting, how to support one another, how to prioritize etc very differently. But without ever being able to accept and/or respect our differences. Only criticism and self righteousness.

At some point the threads holding our marriage together began to unravel. We realized that although we had built this life together, we had been living it in a parallel way, never intersecting. The problem with a “divide and conquer” strategy is in the division, rather than connection.

As divorce began to seem inevitable I left teaching dance for a PT job with more career growth in my desired field in the cannabis industry in 2015.

Having had fought so hard for cannabis access in MA it seemed like a full circle moment to join a team as their very first employee. It gave me an opportunity to be part of building the foundation of an industry that I fought so hard to bring into existence.

As I noted in the blog post “Hindsight is 2020”, I was laid off from that job in March 2020, the week that Covid hit, after a series of acquisitions, mergers and assisting with taking the company public. I floundered. Felt like I lost my footing and wasn’t sure I could find anything else. That self derision is a powerful force and can drag you backward in a blink.

But! I regrouped. And even in the midst of Covid and hiring freezes, I landed on my feet. Better company. Better fit. Career advancement. I’ve watched my child model resilience, maybe I’ve learned a thing or two from her.

I’ve continued to advance, and now work at an executive level balancing work, parenting, life better than I ever imagined I could.

It’s been 5 years now. Last year I closed on the first home that my name has ever been on a deed for. (Even though we owned multiple homes throughout the course of my marriage. That’s a long backstory story of things you allow when you abandon yourself that doesn’t need to be rehashed in detail).

I’m pinching myself every day still that I have built this life on my own. With self worth blossoming, and staying committed to my priorities and doing right by my children.

I lamented often that for years I had no voice. Not only have I found my voice, but I’ve learned to trust it. To let it take up space. Not to please other people, but to be true to myself. In work, in parenting, in friendships and relationships. I no longer resort to self doubt as an instinct.

But. I refuse to call it a comeback, because it was in me all along. It wasn’t until I learned to trust and believe in myself that I could show it to the world. Now I show up fully, multidimensional, personally and professionally. And my promise to myself: I will never be the first person to underestimate my value again.

I have a friend who races motorcycles. We were talking once about crashes and he said “you have to push the bike beyond its limits to know where they are”. I was astounded and filed it for future thought.

Then I thought about it a lot. That’s kind of my thing.

Push the bike beyond the limits to find them? Couldn’t you just tell when you were close and stop there?

Was pushing the limit worth the risk?

Recently Haley aggravated an old injury during a rough patch of seizures. We visited the orthopedist who broke the news that she needed a full leg cast and crutches for 4 weeks.

I was flooded with worry, doubt and fear.

How would I protect both of us during seizures with a fully casted leg flailing like an uncontrollable weapon?

How would she manage the sheer amount of motor planning that goes into being non weight bearing?

Could she manage the physical coordination of crutches?

How do I keep the crutches from being a weapon during seizures if locked in her death grip?

All of this during a period of multiple seizures daily with the accompanying exhaustion and cognitive decline that occurs during these periods.

I resigned myself to a rough 4 weeks and steeled my reaction while she was fitted and given instructions.

We came home- to our third floor walk up- and those stairs might as well have been Mt Everest. She declined to attempt them with crutches and scooted up on her bum.

We reverted to the sponge baths we’ve lived through in so many hospital stays.

My mind cycled repeatedly through a million how will we and what if scenarios.

And I couldn’t hold it together. I was overwhelmed. I thought surely this is the moment where I crash the motorcycle.

But. The days went on. We faced every challenge with humor and love, even when we couldn’t manage grace.

And 2 weeks in Haley’s skin started to break down in the cast. The Dr opted to switch her to a hinged brace. This week she ditched her crutches.

Sometimes the only limit we’ve reached is the one where we stop believing in ourselves. I’ve been thinking about that lately too so more to come soon on that!

So, you know what? I didn’t crash. And maybe on the next corner, just maybe, I’ll have the confidence to push the bike a little harder. Because I exceeded my own expectations, and I haven’t found my limit yet. Even when I thought I had.

I’ve heard the term analysis paralysis before. A friend called me introspective as a nicer way to describe my overthinking tendencies. But I experienced a moment that really highlighted for me how powerful that inner dialogue is, and how the cycle can be interrupted with one small gesture.

We walked in the woods, exhilarated by movement, fresh air, companionship, his dog happily darting around us.

He led, nonchalantly hopping from rock to rock across a stream; no hesitation, no pause in his stride, his confidence in himself evident. And normally I would follow suit, sure footed and carefree. An eye to the next step maybe, but more likely just focused on enjoying the moment.

For some reason though in that moment, I balked. And instantly clouded my head with doubts that paralyzed me. Standing on a rock, looking across what seemed an abyss, him already moving ahead on the other side. My thoughts racing, reverberating, just trapped.

I said out loud “I can’t do it”. And just as effortless as his stride he turned, glanced at the seemingly insignificant distance, and said “sure you can”. And that encouragement was enough for me to break the cycle and take the next step. That interruption of self doubt by a single reassurance.

It took a fraction of a second of doubt to completely stall me. And it took only a moment of someone else believing in me to be “un-stuck”.

This is why our inner thoughts are so important. I also have the power to change the moment for myself; with time and practice to train and redirect my own thoughts in those moments.

My doubts were nonsense and ridiculous. I could very clearly clear the space between the 2 rocks. But one singular moment of hesitation brought a barrage of self doubt. Conversely it took only one moment of encouragement from another to overcome it.

And this scenario plays out in a million different ways daily. The coworker who feels overwhelmed at tackling something new. The friend who is thinking about going back to school. The child interested in a new hobby. Partners facing a new relationship. Small hurdles in daily life.

Ultimately this one small moment sparked a much larger thought for me, reignited desires to maybe return to school. And whether I do or don’t, I credit this moment for provoking the belief that I can if I want to. Proof that you never know the ripples of a small act.

Offer what you can. “You can do it, you’d be great at that”, small words can mean so much to change an inner dialogue, to unstick a stuck thought. To propel someone to believe in themself. And work to sometimes be that voice for yourself!

Don’t underestimate the impact of kind words and supportive gestures, even in small moments.

Take the leap, believe in yourself as much as others do.

2020 was a memorable year for sure.

This was the year that I lost my job but found myself.

On the eve of transition from 2019 into 2020 I asserted that I didn’t need to make a resolution. I was in love with my life as it was and I was hoping for “no big changes” in the year to come.

I was divorced and happier than I’d ever been, I had a job that made me feel fulfilled and finally felt like I had found the track for my professional career after so many years of mostly being a stay at home mom with a part time job. I was dating. I was exploring new hobbies and traveling. I was empowered and emboldened by the fact that I was balancing work and still being a present SN Mom and feeling proud and accomplished all around. I was ready for more of the same.

And then in a 24 hour period I was laid off and we went into quarantine.

Big changes were definitely coming, whether I wanted them or not.

2020 has been a hard year for so many. I don’t want to invalidate that or minimize the losses.

I feel privileged to say that it hasn’t been our hardest year by far, (2010 gets that distinction if you’re wondering) my family is still in tact and alive. I found a new job that is an even better fit.

Maybe I didn’t realize how isolated we were as a special needs family until others had to isolate and felt such a stark contrast.

Sure we missed some special moments with family and friends this year, but we are accustomed to having to miss things because of seizures so the disappointment that others are experiencing is something we’ve just lived with since Haley’s diagnosis. An acceptance I guess that was hard to come by.

And while I didn’t think I wanted change; I liked my little comfortable corner of the world; what I found when change occurred was that I adapted and grew from the experience. Maybe this Mom and epilepsy and life thing has taught me some valuable lessons after all.

Thanks 2020, for being the year that taught me that every time I attach my happiness or value to any one area of life I make it dependent on that.

Onward I am committed to maintaining happiness without contingencies. That is the hindsight from 2020 that I’m carrying forward.

Today’s message brought to you by: The number 2020 and the letter R for resilience.

As holidays approach and are accompanied by the pressure to make everything magical, I feel melancholy at the moments that are escaping notice in the interim as we all rush to the “next memorable experience”. Couple that with the disappointment of seizures invading after a promising start on a new medication and I find myself needing a reminder to stop, breathe and appreciate.

It is ordinary moments, of wonder and innocent delight, that remind me of how extraordinary it is to appreciate the ordinary of this world.

Can words actually share that visceral feeling or impart the importance of finding magical moments in every day experiences?

Can words capture the majesty of standing beneath a wide open sky, arms spread, heart open to the world, spinning slowly while snowflakes descend gently? I feel their cold touch on my face, and the moist trail they leave as the heat of my skin melts them until I can’t tell what is snowflake trails and which are tears.

Can words relay the feeling of vastness of standing on the peak of a mountain; the world spread below you like you have made it, you have conquered all of the lessons to be learned in this earth? But what goes up must come down and your descent will return you to your starting point. And a reminder that life repeats the same cycles unless you change your starting and/or end point and path along the way.

Can words convey the feeling in my chest when I walk into my sleeping child’s room? The innocent face in a peaceful sleep. I feel my heart expand with love so infinite it feels unable to be contained by my body. I need a bigger vessel. Sometimes I feel my heart expand so much I can’t help but think “we’re going to need a bigger boat”.

Can words be connection if I tell you about standing in front of a waterfall? Watching the water rush over the precipice and down, and then meandering through the rocky terrain once it hits the base. Can I convey how that makes me reflect on life and I feel like I was rushing through for so long? Until I finally took the plunge. And the base isn’t rock bottom but where I was meant to land and learn to slow down.

Can words share the feeling of being infinitely powerful and powerless simultaneously? Strolling the shore, ocean waves lapping at my ankles. Water meeting sky for as far as my eyes can see. A reminder of the power contained there. Moments of abandon when I dive under waves in the frigid water, keeping my eyes closed against the sand and life and surrendering. Because some things must be seen with the heart.

The small moments that are not small at all are the ones we will live most of our lives in. Make THOSE ones count.

We fell. Tonight. Just moments ago. After dangerous clusters of seizures. Rescue meds given and finally kicked in. She returned to sleep but I lie there feeling the defeat of yet another cycle of hope and despair.

And the tears rolled down. The sobs wracked my body. I buried my face in the pillow to stifle the sound.

Because when she drops I don’t know how to not fall down the rabbit hole too. I always climb out. But I’ve not yet learned how not to fall.

I can feel it happen. My heart. I feel it tumble. It lifts briefly to my throat, choking me, and then it falls from my chest to a pit in my stomach, to a weight I can feel in my feet trying to root me to this moment. But I won’t let these moments be the ones that define us.

So I reel it back up, hand over hand, inch by inch, clawing my way out by fixating on finding the next place to put my hope. To direct my energy. To fight for a better life for a girl who deserves the world at her feet instead of on her shoulders.

This photo looks like a happy girl. It’s an ironic twist of fate that it is actually a seizure pulling the muscles of her mouth into the resemblance of a smile.

Do you know the feeling when you’re walking through a house of mirrors and everything is distorted and seems off kilter and you feel unbalanced and unsure of where to step next? You walk with your arms out to protect yourself from bumping into anything because you can’t tell what is real and what is an illusion?

So many of us are living life that same way. With a distorted image of ourselves. Unclear about our path. Arms in front, a defensive stance, poised and bracing for the next blow, avoiding pain instead of embracing it for the lessons it brings.

It has taken me some time, and a whole lot of work, but I have put my arms down. I am learning to trust myself and the universe and the steps and path I take. I am learning to risk a bruise or a bump in exchange for the freedom of walking upright without a posture of self defense. I am learning to live and to love unguardedly; with less fear and more confidence that even if I sustain hurt I am strong enough to withstand the pain. And I have to say, life is exponentially better when you embrace all of life’s experiences.

That thing you’ve been meaning and/or wanting to do, that risk you want to take but are holding yourself back, that thing you want to say? Do it. Try it. Say it. Life is short and fragile and we only get today to live it. “I can do it later” is what we tell ourselves to excuse ourselves from doing the hard (but rewarding) things. Busy is a defense mechanism, just another form of arms out. Keeping people emotionally at arms length.

Don’t let your fears distort the reality of possibility.

Put your arms down. Trust yourself.

Live hard. Love harder.

A tornado of letters and words and feelings have been in my mind for months now; too chaotic to process the whirlwind of our recent experiences. Thoughts, emotions swirl like a dust storm inside of me. But that dust is settling as we return to the rhythm of our life and embracing the joy in each day.

In September I sat in the office of a neurosurgeon, one I trusted and respected, the same woman that had placed Haley’s VNS implant years ago. Somehow I felt that hers were the only hands that should be trusted with what we were considering.

Years ago, after several “clean” MRI’s but our epileptologist’s insistence that Haley’s EEG looked dysplastic, we opted for yet another MRI as her brain matured, and we found it. A focal cortical dysplasia in Haley’s left parietal lobe. fMRI and MEG scan showed multiple seizure focal points throughout her left hemisphere though, and we were reluctant to endure surgery when the best possible outcome was likely slightly fewer seizures.

In the past several years however Haley’s decline, both in cognition and quality of life, was rapid and significant. It was time to revisit that option, re weigh the potential outcome, look at new technology and re decide armed with more knowledge.

In preparation last February Haley spent a week inpatient gathering new Video EEG data and undergoing new imaging. Later she also had a new PET scan. The consensus was that the dysplasia seemed the most likely culprit.

I hoped for laser ablation. Minimally invasive in terms of incision and recovery. In that meeting I was informed succinctly that it was not a viable option. The size and shape of her abnormality did not lend well to the technique and the edges of her dysplasia were not clearly defined. The VNS makes higher resolution imaging inaccessible. A traditional craniotomy and resection was offered and suggested.

The question became whether to do a 1 part resective surgery and just remove the dysplasia under the assumption that seizures would resolve if the physical deformity was removed, but the danger was that it was very close to the language epicenter of her brain and we risked a significant loss of language skills. Or a 2 part surgery to place internal grids and strips, monitor the seizure activity for 5-7 days, do some function mapping and then remove the offending areas.

Haley suffers from a sense of trauma with anything hospital related. Who can blame her? A significant portion of her childhood has been spent there. We opted for the single surgery to remove the dysplasia to minimize the emotional impact to her. With her cognition declining so rapidly our trusted surgeon cleared a day and we set surgery for a rushed 2 weeks later.

I prepped Haley in the best way I could. Trying to accurately explain the procedure and possibilities in language she could understand, to abate fear, to offer hope but not false promises, and to reassure her that she was perfect with and without seizures.

Surgery day came and we were all filled with hope and fear. We distracted Haley with chapstick flavors inside of her anesthesia mask to mask the harsh smell of the gas that would put my baby girl to sleep. She decorated her mask with stickers and happily played her iPad as we waited for her turn, alternately seizing and charmingly making everyone laugh as she regaled exploits of her pets to the myriad medical professionals that came in. Hope was high and the atmosphere was festive.

I suited up and accompanied her into the OR. She clutched her special Boo boo bear and I did my best to alleviate her fear, knowing it could never be abated. My baby girl laid flat on the OR bed and the anesthesia began pouring into her mask. She fought it slightly, the harsh smell and that feeling of suffocation. And she started seizing. I was told to peck her goodbye quickly and whisked away holding her bear in arms that ached to hold her.

Walking out of that room, leaving my baby girl unconscious and seizing was one of the most difficult moments of my life.

My sister and I waited together. Nervously pacing the hospital halls. Her coaxing me to eat. Every hour an OR nurse would call with an update. 1 call. 2 calls. 3 calls. 4 calls. 5 calls. 6 calls. 7 calls. 8 calls. 9 calls. Finally the last call- they were closing. We could meet them in the PICU waiting area in about 1-1.5 hours.

As they transferred her from the OR to the PICU, assessed and awakened her our surgeon, Dr. Duhaime, came to see us. She assured us everything had gone as planned. Dysplasia and brains do not look as we imagine, the folds are not clear in a live human brain and she relied on image guidance to remove as much of the area as they could. She warned us that it very likely impacted her language function and she worried aloud at the extent of loss and small likelihood of recovering it. Then she briskly walked to assess my girl before we would be admitted to the room.

In those minutes the NP, Jess, that works with her (who often distracted and amused HALEY with her gentle, playful tactics so we could discuss logistics) came rushing in. “She’s talking normally! She can follow multi step directions without visual cues! Her language seems FINE! Come see her!” That was a moment of celebration, relief, and reward after a harrowing day.

Haley was, as expected, in a lot of pain but good spirits. She ate the snacks provided, opened gifts and face timed friends after 11 hours of brain surgery. My girl was her fiery, fierce and funny self. But she was also seizing. And they looked the same. 1 seizure. Then 2. Then 3 within hours.

I had been prepared for this. Seizures post surgery, even successful surgery, are common. The trauma and agitation to the brain cannot be understated. I held onto this logically. But I was devastated.

I clung resolute though that regardless of outcome this WAS the right decision. I could not look into my baby girls suffering eyes any longer without knowing that I had done EVERYTHING possible to help her. We had hit our point of last resort.

But Haley continued to seize at exactly the same rate as pre surgery. We were so grateful to have no apparent deficits, but no one was prepared for no seizure improvement at all.

Haley was scheduled for a new MRI to see if there was a brain bleed or piece of the dysplasia that was missed. Perhaps the image guidance had been off by fractions of a centimeter and some dysplasia remained.

The MRI showed nothing. Except. The neuro-radiologist noted that close to the original dysplasia was another “fuzzy” spot. Even less clear. Even closer to language.

Dr. Duhaime stood in the hall with me. In her eyes I saw a strong, capable, brilliant surgeon. But more than that professional mask, I saw a woman. I saw a Mom. I saw genuine care and concern for my daughter. And she said to me “I think I want to get back in there before scar tissue forms. Any other surgeon would say to let her heal and see what happens. That another surgery now would be crazy”. She looked at me and said “I don’t know what to do. My desire to help Haley is clouding my judgement” and I’ve never been so moved by another’s love for my girl. We decided that Haley’s medical team would meet as a group and make a recommendation.

Our epileptologist Dr. Thibert called in while on vacation. A neuro-radiologist we never laid eyes on came on his day off. The surgical team gathered. And we decided to schedule the 2 part surgery for the following week. But let Haley come home in the meanwhile.

The next few days were rocky. Rollercoasters of emotions and seizures. Doubt and uncertainty and questioning our every decision coupled with Haley’s disappointment and pain. I felt guilty for trying to spare her the 2 part surgery only to have to now endure that. The day before the second surgery, with Haley seizing but defiant and scared and outright refusing to return to the hospital we made a game time decision to give her another week. Everyone was concerned about 3 administrations of anesthesia and 3 traumatic surgeries in such a short time.

Haley was ecstatic for a reprieve and decided that she wanted return to school in the interim. That girl is the epitome of brave and resilient.

The week passed and with grim Groundhog Day like familiarity we showed up for surgery #2. Haley was uncooperative. Fighting everything. Sassy and spirited and stubborn. It’s more difficult than listless and compliant but I’ll take that fiery spirit any day.

I again walked behind the gurney to the OR. This time she went to sleep with no complications and because it was only the placement of grids and strips the surgery only lasted 5 hours.

Dejavu set in as we did the same laps, waited in the PICU waiting room and then reunited with my now tethered girl.

She spent several days with her head swathed, wires protruding from her skull and tethered to the machine that monitored her brain from the inside out. We worked to eliminate infection risks. And struggled to entertain and cheer a physically and emotionally hurting, frustrated, traumatized girl.

We created a poll asking whether ladybugs bite and it became a big debate as we tallied responses. We had the best PICU team ever with an attending physician assisting myself and a nurse with a bed change after an unfortunate bed pan mishap. That same physician painted his nails in a ladybug pattern and drew her pictures of lady bugs with teeth that looked suspiciously like termites.

Child life helped fulfill her requests for slime and crafts. Friends showed up with gifts and hugs. Days passed. We wanted data, we got data. 15-30 seizures/day of data.

That data showed that the almost indiscernible spot on the new mri was indeed another dysplasia. We decided to do some deep brain stimulation to try to do some function mapping and see what outcome we might be up against. They stimulated one area as Haley successfully repeated simple sentences. They stimulated another probe in an active area and again Haley smoothly kept on task. They stimulated another very agitated area and I saw a look of sheer panic cross Haley’s face. Frozen. Terror. Indescribable and undeniable. She could not speak or comprehend to follow a direction. We started again. Area 1. Area 2. Area 3. Same results. We could remove the offending tissue in the first 2 active areas but touching the 3rd would unequivocally mean a complete loss of language function.

We prepped for surgery. We waited for hospital time with delays. Haley melted down. It was too much, too many asks of a young girl who just wants to live a life outside of hospital walls. The compassionate anesthesiologists came to her room and sedated her for the gurney ride to the OR this time.

So many hours later my girl emerged. Awake. Speaking. And still seizing.

I held myself together in front of her but after I settled her in to sleep and seize I sobbed. Heartbroken. Devastated. Hopeless.

We were released 24 hours after her third brain surgery in 3 weeks. The team confident in my ability to care for her at home and her resolution that she needed to go. Life was waiting.

In the days that followed we observed that her seizures seemed to have lessened in strength. And reduced by about 50%. She was averaging around 10/day but she was no longer incontinent with every one.

She returned to school less than a week later. Incision still bearing stitches and a large bald stripe testament to the healing that had just begun.

It’s now been over 3 months since that last surgery. True to counsel Haley has continued to improve. She is now averaging around 5-7 seizures daily with only about 1/2 of those being convulsive. Her cognition is improving. There is fuzzy hair regrowth along most of her incision site. She’s even had a handful of seizure free days! We hadn’t experienced the glory of that in nearly 10 years.

*Edited 2/12 to note how quickly things change. In the span of a week Haley has lost a significant amount of the improvement that she had gained from the surgeries. Epilepsy is nothing if not unpredictable.

The dust is finally settling. The tornado of thoughts, rapid fire hard decisions and raw emotions and impact of that are no longer engulfing and all encompassing. And while the seizure storm in her brain continues at least we’ve provided an umbrella. And believe that there’s sun behind the clouds. New treatments, new options, renewed hope in the present and future. And the consistent theme that life is fragile and short and we must seize every moment and live with the knowledge that tomorrow is only a possibility, not to be taken for granted.

Live for today. Love for today. Face the storm.

Footnote- I can’t begin to express our gratitude for our team at MGH. From Dr Duhaime who was brave enough to care for my girl, and Jess for her patience with her to the cheerful child life specialist and the PICU team. Dr Bess for the stuffed pig with the curly tail that made Haley smile on a day that nothing was coaxing cheer. To every medical professional who answered our lady bug poll and engaged with and saw a child not just a patient. To our long time epilepsy specialist Dr Thibert who has been a voice of steadfast support. To our friends, family and online epilepsy and cannabis communities who sent flowers, gifts, prayers and love.

I’m humbly, overwhelmingly, indescribably grateful. I’ve never felt more supported by a village. The outpouring of love for my strong willed, sensitive, resilient girl is appreciated immensely.