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. But. Like in the fun house don’t let your fears distort the image of possibility.
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.
We are walking through the parking lot talking proudly about our kids. He says “little boys learn how to fall” referencing his son’s propensity to spend hours tossing and diving on the ground to catch a football. I’m so floored I almost stop walking, stutter mid stroll, at the truth of this. As I listen to him talk of his exploits as a kid and of his boys, thoughts of how epilepsy has turned me into a helicopter, overprotective, on edge, scared Mom who has taught my children neither to fall or fly, but only to assess and avoid danger, invade.
My oldest, my fearless son, often left me holding my breath, squeezing my eyes shut and offering silent prayers that he wouldn’t break anything this time.
My middle child I encouraged to climb one more branch, hop back on the bike, I believe you can do it! Put that one on a stage and they shine.
But my youngest? My special needs child? I often said “sit down, okay”? You don’t want to hit your head again. What if you have a seizure right now? Are you making safe choices?
I lost my place of yes and replaced it with trepidation, warnings and “be careful”! I preached caution and safety.
I’m sorry my loves. I wish I could go back and say yes more. I hear sayings like “Fortune favors the bold” and “No risk, no reward” and I physically flinch. Our whole life is a risk. It’s constant vigilance that if she goes down we can protect her head, her face, her arms that bear the impact but can’t brace for it. I don’t need to seek adrenaline rushes, I need a break from them.
But I hope, Haley, as you enter these teen years that you learn how to fall. I hope to help cushion the blow when I can, but say yes as often as possible so I can see you shine when you fly.
And more importantly I hope to teach all of my children to fly. To pick themselves up, dust themselves off after a fall, be resilient and confident and worry less about skinned knees and broken hearts. Just to worry less actually. Embrace life, risk and all, and the reward of experiences.
And in this post divorce life navigating new relationships and parenting I am again finding my place of yes. For my children, for my partner, for myself. Risk (physical AND emotional) and reward.
Because “what if you fly?”
All my life I have defined and labeled myself first and foremost as an extension of someone else…
I have never thought of me principally as “Individual”.
And while all of those titles are of varying importance and comprehensively part of me, they are no longer my defining factor. I am me. And that alone is enough.
Granted, I can not (nor do I want to!) separate those parts of me. This is the first time that I am acknowledging that being an individual is just as important as being a Mom and I don’t have to sacrifice one for the other. I can do both. Growth is painful and difficult but I don’t run from either of those. I meet challenges head on. Not without fear or anxiety or pain, just in spite of.
Most people live in self preservation mode. They see pain and they want to avoid it. Avoiding pain is avoiding the lessons that can be found within. So I will welcome the pain and in return I am rewarded with both the experience and the lessons.
So…I will continue to embrace vulnerability and wear my heart on my sleeve. I will dive head first into life and all of the experiences that are open to me. I will live with an open mind and an open heart and accept gratefully all that this life has to offer and teach me.
I stare at the blinking cursor willing the right words to come. They don’t come. And I continue to put more pressure on myself and they get further and further away.
With only 3 days looming until the anniversary of Mae’s death her mother Susan’s words to me from the funeral haunt me. (She was comforting me when I should have been comforting her. But that is Susan. Generous and giving.) We clung to one another in the way that only grief can make you and she said “Never stop writing. Your words touch people. They matter.” I promised. I have failed at my promise. But I keep trying.
Why though do we never talk about the dark side of hope? The nagging fear that we may be holding on to hope that is impossible? Should we temper our hope or let it run free even in the face of seeming impossibility? How do we hold onto it then? Do we try to balance it or indulge it blindly? When do we let go of hope for certain things so that acceptance and grief can change our direction and focus?
All of the questions. None of the answers. Just overwhelming sadness weighing me down as I get through one more day. Trying to grasp at hope and feeling hopeless anyway.
Gratuitous photo of Haley reminding me that love is the answer even in the face of uncertainty and despair:
Those statements sum me up. And I could add paragraphs of words that try to explain the coexistence of hurt and hope in me or justify how or why I feel that way or why it’s so damn important to acknowledge BOTH. But today it’s enough just to say that I hurt. But I hope. And I hope. But I hurt…
For months I couldn’t write. Not a word. I called it choking on words. I was really choking on grief. The grief remains but the words came unlocked. Well. Maybe not fully. But enough to try again.
Last weekend we spent the day at a lake. Surrounded by family and love and all of the offerings that being together on a lake bring. Swimming and laughing and splashing and fishing and fun. I snapped photos of cousins whose love transcends the time between visits in that way that only exists between cousins.
Going through those photos I found one that took my breath away. Instantaneously. A gasp at the beauty of my daughter with her hand outstretched. I showed it to her and asked what she was doing. She replied “Catching Sunbeams”. And my first thought was Oh how I hope you see your own radiance. The sunbeams that live within you. Because I do. My second thought was that’s a damn good analogy for special needs parenting. Maybe even parenting in general. Maybe even life.
Because…Aren’t we all just catching sunbeams? Grasping at intangibles? Trying to hold on to the light in our lives while lighting the darkness for those we love? For me as a Mom it’s holding onto the memories of the good times while wading through the bad. It’s appreciating the good days all while trying to hold the memories of the bad ones at bay. Fighting not to let them encroach too far. It’s seeing the light in my daughters eyes when they are happy. Sunbeam moments are fleeting. Clouds can move in or the night inevitably darkens the sky. And we feel the absence of their warmth and radiance. For me the key is remembering that the shadowy, cold, dark place is temporary too. There are more sunbeams around the corner. Stretch out your hands and heart and see how many you can catch too…