PTO

My first ever PTO board meeting was in the home of a fellow mom.  Our president led us in a loose, meandering discussion of the year’s agenda.  The hours ticked by as we brainstormed about the preschool, dished about our lives, our special needs community and how we wanted to make the world even better for our small children.   When I left that first meeting at 1:30AM, my throat was dry, I had a headache and a very long to do list typed into my phone.  I was exhausted and exhilarated at the same time.  I felt included and excited to be back to the world of educational programming.  This time for the benefit of my own son and other children at his school.

Our PTO board dug in hard.  We gave a “welcome pitch” to a group of severely under-caffeinated parents on orientation day and quickly began checking off items on our fundraising and enrichment wish lists.  We had more late night meetings wherein we shared ideas about work-life balance,  navigating through IEP and 504 meetings,  potty training, town gossip and school related activities.   Our meetings were long and we grew accustomed to lingering over our glasses of wine chatting about being mothers.  It was my first taste of school community through the lens of special needs parenting and it came at just the right time.

Our group was led by a quiet/unassuming president.  She brainstormed alongside us while having her own (best) ideas tucked away.   Her ties to our hometown community run deep and she has a business savvy that comes from years of practice managing marketing teams in the biotech sector as well as her own children’s clothing consignment shop(s).    Laura DiCesno led our group through discussions;  asking questions, offering her advice and opinions; always fostering relationships with each of us and the school administration in balance.

A year ago,  Lil J was scheduled for an extended inpatient stay at Boston Children’s Hospital.   Epileptic patients like Lil J have to wear button front clothing so that it can be removed easily without disrupting the EEG Leeds (wires) that are attached to their head and chest.  They also stay confined to their room while hospital for video monitoring.   The Red Sox had just won the 2018 world series and I was on the hunt for a button front jersey for him to wear during his stay.  I called Laura who immediately went to work to find Lil J a jersey.  She succeeded in finding one that she gifted to our family along with a Spiderman costume, knowing this was his favorite super hero.  Lil J wore the Sox jersey during his entire stay and continues to wear the Spiderman costume.

Jersey

The following spring, Laura invited our family to attend an event that included the GOFI (Golden Opportunities for Independence) organization.   This local organization raises service dogs, including those who work alongside children who have epilepsy.  Laura encouraged us to speak with the organization’s founder and later invited them to visit the preschool, providing Lil J with another opportunity to interact with the animals.  Our family is now on the waiting list for a GOFI dog to assist Lil J.  We would have never made this connection without Laura’s help and encouragement.

gofi

Laura doesn’t do anything half-way.  I learned from her that you need to be passionate about your community to make a difference and inspire change.   During teacher appreciation week,  Laura decorated the entire preschool to a hilt, ensuring that any occupant within its hallways KNEW that we were honoring the staff.  Her twin boys are regularly dressed impeccably and identically.  They enjoy the utmost Pinterest-of-parties; thematic and with every detail attended too.   Like most mothers in our town, Laura deftly manages her home life, volunteers at the school and runs her own business.  She is determined and on the go, but never too busy to stop and chat during school drop off.

sweets

Last month, this generous, perfectionistic, truth-telling woman was diagnosed with an incurable brain tumor; glioblastoma.  The news has been devastating to our community of mothers, who have known Laura, her husband and their twin boys since their early days at the Westwood Integrated Preschool.  We know Laura as someone who works hard – very hard – to accomplish her goals.  We know her as a mom who advocates for her children relentlessly; doting on them day and (some sleepless) nights too.   We know that Laura is caring, compassionate and often thinks 10 steps ahead of other people.

Lil J and his classmates do not yet know how their lives have been impacted by Laura; her influence and leadership.   They only feel a sense of community; one that that was cultivated several years ago at a PTO meeting.  For this reason and so many more, I am thankful to Laura for her friendship.

 

Laura DiCesno Go Fund Me Page 

Village

When we started our journey with Doose Syndrome three years ago, I did not know where it would take us. In our first few hours, days and weeks I coached myself to think positively while lying awake at night picturing the worst possible scenarios. My occasional habit of falling asleep while listening to Sheldon Cooper bickering with Penny and Leonard became an addiction.

The village of people we had in our lives changed. Some people “leaned in” to us even more. Some people retreated or fled. All at once we were in the position to disclose to complete strangers “we have a child with special needs” and I was not ready to do that. But at the same time I wanted to shout “my child has epilepsy and I’m more terrified than I’ve ever been in my life; please help!!”

Over time, our village stabilized. We huddled together with those who saw us through the difficult, early days. We cried with them. Whispered together in the office or on the phone. We had coffee dates, dinner dates and play dates. We did yoga together, texted frantically at all hours of the day and night. We ate more pizza together than I care to admit. Our village encircled James during his first years with epilepsy and brought so much love into our home.

Our village grew. We met other parents of special needs children who have become partners in crime. We dug into the relationships we have with more experienced parents – our trusted guides. We had deeper talks with friends about James and his needs. Those friends made calls and referrals on our behalf. We met new practitioners. We met other epilepsy parents. We discovered the CURE foundation – which lead us to a research path for James and MORE people. We reached out to each other as a source of strength and compassion for what was happening in our lives; something that is difficult to do when your body is in “fight or flight” for months on end.

Eventually, we learned to let go, just a little. To let Lil J climb the tall structures, take swim lessons (without us sitting inches from the water), and go a day or two without a nap. Our village gave us the courage to allow him to play at a friend’s house without one of us being there. It helped us to develop trust in other adults to care for Lil J without fear of judgement and stigma.

We all know there are no rule books for parenting; it’s a lot of guesswork, hope and listening to feedback from our children. And then… more hope.

As we journeyed to the first day of kindergarten, each decision felt enormous. Our village surrounded us with answers, options and importantly, which questions we should be asking.

And eventually, we made it.

HE made it.

He entered kindergarten with confidence and excitement. All the months of agonizing decisions, meetings with teachers and school administrators, lawyers, doctors, tutors, therapists… all amounted to him being able to strut out of our front door that day and head to school.

I will never know what it is like to wake up in the morning without instinctively thinking “Lil J needs his depakote!” I will never know what it is like to watch my youngest son board the yellow school bus with his friends. And, I will always wonder “what if” we hadn’t traveled to England where his seizures started? For me, these are “sunk costs” of having an epileptic child and I try not to dwell on them.

The enormous, unfailing truth is that our corner of the world is much richer and deeper with Lil J’s epilepsy as a part of it. We have reached out to other families starting their journey or in some cases, closing that chapter of their lives. We have given back to the hospitals and organizations that support Epilepsy warriors. We have opened our hearts to the greater expanse of the universe that calls us to be just a little gentler and more patient with fellow humans. We have learned to trust Lil J and his uniquely perceptive sense of others and self. And we have become part of the ever growing, ever changing landscape of special needs parents. We have developed a growing Village that allows Lil J to explore the world boundlessly.

#doosewarrior

Tide

Next month, Lil J will be 5. I showed him a picture of me 5 years ago, with my swollen belly, a huge expectant smile on my face, standing in the bedroom of our old apartment. “I lived in there?” He asked me, curiously, poking at the picture and enlarging it to draw focus to my stomach region. With eyebrows raised he looked at me skeptically, “I cannot see me in there.” Chuckling, I explained the phenomenon to him while we ate our purple pancake lunch.

The pure Goodness, Joy and Innocence that exudes from this tiny human strikes at my heart each day. He is a fundamentally caring and compassionate person. He brings his brother an umbrella at camp pick up when it’s raining, he packs extra snacks for the whole family when we are going on a car trip, he reminds me “don’t forget to pack my ‘mergencgy medicine mommy!” He is loving and kind; jumping at the chance to bring care packages to neighbors or dive into bed for snuggles at any time of day with any member of our family.

He is growing. Finally. Most parents want to keep their children just how they are. “Freeze time.” I did too… until Epilepsy and Depakote actually impacted Lil J’s physical growth for more than a year. As his brain has recovered from the trauma two years ago, he has grown almost 6 inches in as many months and is maintaining weight over 35lbs. This is a huge accomplishment for Lil J, who sustains himself on the equivalent of one meal per day. 50% of this is peanut butter. He would sleep with a jar of peanut butter at his bedside if we let him.

I struggle to wrap my head around about what is not going well. Epilepsy is impactful to our whole family system. If you know us, you see that we are a happy family with two amazing, thoughtful, energetic boys who play badminton in the backyard and ride their bikes and scooters around the neighborhood endlessly. You know that we play board games and hide and seek with our children, bring them swimming, to play dates, to soccer games and on vacations.

Behind our front door, we are fighting every single day to get James the speech therapy he needs to help with a progressive delay in his receptive and expressive speech and word finding. This involves calls to our new insurance company, petition letters from his clinicians, coordination with our nurse advocate and at the end of the day, a lot of time and out of pocket expense.

Behind our front door, we are working to understand Lil J’s behavior. As sweet and congenial as he can be, he has difficulty with being flexible and has low frustration tolerance, poor executive functioning, slow processing speed, mood fluctuations, and rigid thinking. These skill deficits render themselves as meltdowns when he cannot get his needs across, and violence when he feels threatened. This is usually directed at our family members, his close caregivers. No one knows how to help someone who is violent, even when that someone is a young child. He does not have a specific behavior diagnosis and so this is thrown into the pile as an “epilepsy symptom.” The door to help for Lil J has been shut in our face countless times. By the school. By private providers. By social groups. By the hospital. We are on waiting lists that are 18-24 months long. And so, we make calls, we send emails, we read books about therapies and laws that we can exercise to our advantage. And we (I) hope that in the meantime, some day, Lil J will magically get better.

Behind our front door we are managing a child who is underserved, yet over-medicalized within a broken healthcare system. He is frightened of any type of doctor. Of the dentist. He has a fear of laying down, “it will make me dead if I lay down in The Office mommy” he says to me earnestly. I scoop his tiny frame onto my lap and kiss his cheeks. “I will lay down with you,” I say. “We will snuggle. We will not die.” We visit The Office and stay for 6 hours. Blood draws, a “Bored Meeting” (finance consult), snacks and cocoa in the cafeteria and a stop at neurology to say hello to our friends. We re-rest the musical stairs and find a treasure in the gift shop. We attempt to re-acclimate during these visits.

Behind our front door, there is a brother. A kind and patient brother, Deebs. A brother who teaches Lil J how to play video games and also, how to create the components of “breakfast in bed” for Daddy’s birthday. A brother who teaches him what a “noun” is while playing Mad Libs and how to dribble a ball. His coach. His cheerleader. And because they are siblings, at times, his biggest adversary. There are fights for attention, for toys, for food and for friends. Lil J is fiercely protective of his big brother, unless they are fighting. Deebs would love to have more than 50% of the limelight all of the time. This is an honest feeling of childhood. I find myself wishing I could split into two beings and curl one around each of them.

Behind our closed door, I have resigned from the professional work world for awhile. I am taking time to manage Lil J’s care and our household. My time away from the working world coincided with an uptick in Lil J’s seizure events. The hot weather is difficult for people with epilepsy. A side effect of most AED’s (anti-epileptic drugs) is the absence of sweating, which quickly leads to overheating. For Lil J, overheating is a seizure trigger. It’s a cruel cycle that demands caregivers be proactive and pay close attention to his queues.

A good friend of mine has said to me for many years, “summers are precious, we should not waste them.” I am finding this to be true; soaking in each moment with my children, caring for our family and rediscovering the home we claimed 4 years ago. Life moves so fast and I am easily pulled by its tide. It is a satisfying feeling to be at home, actively focused on Lil J and Deebs. I like to think that somehow, in time, my presence will be impactful. There is no question that they are impacting me; my soul is more at peace these days.

Both boys are involved in a camp program this summer, arranged before I took my break from work. We start our mornings in a hustle of bathing suits, sunscreen, breakfast and espresso (for me!) Sometimes, the car ride is quiet, but usually we jam to Spotify or the local radio station. A few days ago, Michael Jackson’s “Billie Jean” came on the radio. “Turn it up mama!” Lil J’s voiced piped up from the backseat. I happily complied and began to bounce my head to the music. A few minutes later, Lil J declared to us “My body likes this song so much that even my eyebrows are dancin’!” We all laughed and wiggled our eyebrows in joy alongside him. This. This is the joyful tide that I am now swept away in; happily floating down the beach with my family and dodging under the waves as they crest.

Brave King James

Our first Epilepsy walk in honor of our Brave King James #DooseWarrior is in the books!

April 14th was unforgettable. We walked beside our family members who have carried us through this journey and among groups of families and supporters who have faced similar challenges and hopes.

To do this in the city where I spent my childhood weekends, alongside my forever best friend and sister, who has been an absolute rock of support over the last 18 months brought things full circle.

I am so thankful to everyone who made donations to support our team. We are so humbled by your generosity. The Brave King James team was the number 10 fundraising team among hundreds of teams who participated in the national walk. Almost $7000 was raised towards Epilepsy research by our team. This gives us so much hope for the future of our Brave King James and many others who are now part of our Epilepsy community.

Many people have asked me recently how Lil J is doing. A post is coming soon with an update; we just finished several rounds of updated testing.

For today, I just want to THANK the 164 individuals/families who donated to our team and the Epilepsy Foundation. Thank you for continuing to support our family as we navigate through these waters and for simply recognizing Epilepsy as a health issue.

Before Lil J’s diagnosis, I viewed Epilepsy as a problem that a small, unknown population of people were afflicted with.

I was very naive. 1 in 26 Americans will develop Epilepsy in their lifetime. The rate of epilepsy diagnoses is growing faster and faster and there is nothing (not drugs, devices or procedures) that is guaranteed to stop seizures. We simply do not have a cure. We need to research and understand the brain more thoroughly.

Until a cure IS found… we have hope. And we have the support of our friends, our family and our community. And so truly… we thank you. From the bottom of our hearts.

Closure

You know the saying “when it rains, it pours“?  In the fall of 2016, a storm hit us so hard that it caused a very quick downward spiral.  It shifted our universe.

Before we left for England in July, 2016 we made plans to landscape our backyard.  We signed a contract with Paul Kauranen of Allure Landscape Design.  We envisioned being able to create a safe environment for our boys to play in and an area for us to have family dinners, etc.

While we were in England, grappling with the beginnings of Lil J’s Doose Syndrome, we received multiple calls from Paul demanding to know when we would be back in order to provide payment and start the project.  He claimed that he had purchased (unauthorized) plants and other materials for our yard.  We were annoyed at his brazen approach, but could not turn our focus away from Lil J.

Upon our return from England, we contacted Paul, but did not receive any response for weeks.  In fact, the next form communication we recieved was an (unannounced) bulldozer parked on our front yard on a Sunday afternoon.  At that point, my husband contacted the police.   We demanded that the equipment be removed from our property.

The following weeks are a blur,  Lil J had multiple EEG’s and regular appointments at BCH for monitoring. He simultaneously was integrating into a new school and we were getting to know our new nanny.   Lil J was not quite stable and we felt we had very few reliable resources at hand for managing help with his care.

After several rounds of negotiations, angry confrontations and eventual concessions,  the landscaping project moved forward.  Our grass was removed and supplies arrived for an irrigation system and small patio.   My husband was traveling for work and installed a camera so that he could monitor the work from across the country.   After two or three days passed without any further work being completed, we attempted to contact Paul.  Nothing.


Three weeks passed as we stewed and watched our yard turn into mud.   We continued to keep watch over Lil J at night to ensure SUDEP had not captured him and watched his every move during the day as well.  We carved out 1:1 time for Deebs and did our best to reassure him that he would not “catch” epilepsy from his brother.  We worked full time and fought with the insurance company.  We planned our Thanksgiving menu. 


At the end of October when it was clear that Paul Kauranen would never answer our calls, texts, emails or certified mailed letters we knew that it was time to find a new contractor and declare the situation a loss.  The loss was emotional… how could someone take advantage of US, during this awful time?  The loss was enormously financial….it has had a lasting impact.  The loss was physical;  it caused damage to various parts of our yard that had to later be repaired.   And for a period of time… we lost ourselves in the madness of all that was taking place.   It was just too much.

Our new landscaper, Jason Brown,  worked quickly during the late fall and following spring to make repairs and get our yard into fantastic condition. The kids eventually got their playspace.  I have multiple gardening areas.  My husband has a workshop.  We all have a place to enjoy grilling marshmallows & having dinner together.  Some of my favorite memories from this summer were spent in our backyard, watching the kids play tag or playing badminton with them.  We all enjoyed picking veggies from the garden and gobbled down my husband’s zucchini pancakes.   We held a birthday party for each child in that space this summer.  Having that sacred place to enjoy together repaired our weary and broken souls.

Last month, my husband received a call and was asked to provide testimony in front of a grand jury regarding his experience with Paul and Allure Design.  Unsurprisingly,  Paul has a steep criminal record and no landscaping credentials to speak of.  He has scammed dozens of families across Massachusetts.  His arraignment was on November 2nd.   The news story is here.  Turns out for Paul, “When it Rains, it Pours.”  And that my friends, is what they call, closure.

 

 

 

 

 

 

SUDEP

Each time we brought our children home from the hospital,  we knew about the risk of SIDS.   We took great pains to ensure they slept on their backs in properly ventilated rooms swaddled like burritos.  They slept bassinets or cribs free from anything that may harm them and drank as much breast milk as possible.  After each of them celebrated their first birthday, I felt myself cross the small worry of SIDS off the list.  We had made it past the danger zone of losing a child in his sleep.

During our first lengthy appointment with Lil J’s neurologist at BCH,  a lot of information was discussed.   His medical history, EEG’s and medications.  We discussed his short and long term memory, social skills and whether he should attend preschool.   The appointment was nearly 2 hours long.  At the very end,  our neurologist said to us “try to resist reading anything scary online; there’s a lot out there.  If you have questions,  ask me and I will discuss it with you. You will see and hear things about SUDEP.  It is too early to discuss this now while he is little and you are managing his care.”

“SUDEP?” I asked.

“Sudden Unexpected  Death in Epilepsy” she defined.

We were silent.  The fear was back in the pit of my stomach.  Except this time,  there was (is) no benchmark for when it will be resolved.  It is just out there, and we don’t have to read online to be exposed to stories… excruciating stories of families who have lost their children to SUDEP.


Much like SIDS, little is known about SUDEP and why it happens.  SUDEP occurs in approximately 1 per 1000 people with epilepsy (1 in 4,500 children). SUDEP deaths are often unwitnessed with many of the deaths occurring overnight. There may be obvious signs a seizure has happened, though this isn’t always the case.  This is why October 23rd has been declared “SUDEP Action Day.”

Although quite a few research efforts are underway, and there are best practices to prevent SUDEP, this is a scary topic for epilepsy families and caregivers.  It is also not discussed as often as it should be, much like the brief mention of SUDEP at the conclusion of our appointment 14 months ago.  It is a difficult topic, one which reverses my blood flow.  However, as one insightful researcher pointed out this weekend during the #DayofScience conference, we really cannot get to the bottom of any issue without discussion and examination of the problem as a community of parents/patients and clinicians.


As members of this community, we left the conference on Saturday, recommitted to further educating ourselves about SUDEP, regardless of Lil J’s age.  It simply cannot be an unspoken fear without any action.

#doosewarriors

 

Transformation

On the evening of August 1, 2016  I fell asleep in a cozy home in Northumberland, England.  Our hosts had graciously given up their own bedroom to my husband and me.  Our children bunked in the room next door with their friends.  We were 7 days into our 11 day journey.   The house was quiet… peaceful.

I awakened early the next morning with a migraine and instantly had a feeling of dread.  Something was wrong.  I wasn’t sure what.  Everything seemed a little fuzzy.  I was splashing cold water on my face when Deebs burst into our room “Lil J is crying, Mama!”   It was so early in the morning that my first thought was “it must be one of his  nightmares.”   I followed Deebs into the children’s room and retrieved Lil J from the arms of my friend Kirsty, who has known both of my children almost since their birth.  I brought Lil J back  to our bed and attempted to calm him.  Nothing worked.  He cried, wordlessly for 20 minutes.   His body did not move, he just cried.  Instead of being sympathetic,  I was annoyed.  Frustrated.  My head pounded.  I couldn’t fix the problem.

In hindsight – this should have been an enormous clue.  My Lil J does not cry for more than 30 seconds when he is hurt.  The other day he fell on our patio and skinned both knees.  Blood was trickling down to his feet.  He howled … for exactly 30 seconds.  Then he stopped,  stretched his arms out for a hug and asked for  a Paw Patrol bandaid before he returned to playing.

Last August, after Lil J stopped crying, he started throwing up.  But, the vomit was all clear and foamy.   Something about this set an alarm bell off in my head, and I remember thinking  “haven’t I read that this happens after a seizure?”   I pushed clue #2 aside and fell back on what I knew.   “Oh no… he has the stomach bug!”

After vomiting, Lil J fell asleep for several hours.  I now know this the course of events represents the classic pattern for what is known as “postictal”   – likely occurring after a tonic clonic seizure.   Later that day, after Lil J had a seizure in the Northumberland hospital, the doctors explained to me that in some patients, there is a period of time during the postictal state where the throat, mouth and jaw are essentially “frozen.”   The person can breathe, but they feel a bit paralyzed and it is pretty scary.  Now I understood why Lil J had been so upset earlier that day.   He hadn’t been able to communicate with us.  We had been offering him all his favorite items – but he was frozen and couldn’t accept any of them from us.  I felt awful that I had been annoyed.  I felt awful that he was going through this.

img_9616

(First night in hospital (8-2-2016)

When Lil J seized in the hospital at approximately 2AM, I called my husband in a panic.    “I cannot do this alone again,” I said.  “He is having more seizures, you have to come back here!”  Earlier in the evening, we had agreed that one of us would stay with Deebs and one of us would be with Lil J.  Thank goodness we were with friends who could care for Deebs as if he was one of their own children during this crisis.   My husband was asleep when I called.  He was an hour away by car, in a foreign country where cars are driven on “the wrong side of the road.”  He arrived at Lil J’s hospital room 40 minutes later.  At the suggestion of Justin’s cousin (a neurologist), we set up an iPad camera to capture Lil J’s every move, targeting his myoclonic seizures (we didn’t know what those were; just that I’d seen odd movements all day).   Then, we sat together in the dimly lit room and watched Lil J twitch and jerk throughout the night. Worrying, whispering and trying to keep each other calm.

My husband is an excellent sleeper.  He falls asleep easily at bedtime and usually sleeps through the night.  Noises don’t  usually bother him, or if they do wake him it takes zero effort to fall back asleep.  Stress during the day doesn’t  keep him up at night.  The 2016 election was the first time in our 15 years together that I ever saw him toss and turn and talk in his sleep.    I am a terrible sleeper.  I take forever to fall asleep, I don’t stay asleep and I wake up early.  When the kids need help during the night, I have a sort of sixth sense for this and am usually awake just a few moments before they begin crying or arrive at my bedside.  When we were transferred to the RVI hospital,  only one parent could stay in the hospital room overnight with Lil J and so we took turns.  In theory, this was so that we could sleep during our “night off.”  The days and nights passed without rest regardless of where I was.   My 39th birthday came and went while I sat in the hospital with a dry rice krispie treat from Subway on the shelf of the Murphy bed.   I knew I must be tired because my head was still pounding, but I couldn’t feel the exhaustion yet.


(Royal Victoria Hospital, 8/6/2016)

When we returned home to Boston, Lil J didn’t know where we were. His toys were brand new elements and we had to slowly show him around the house.  He was thrilled by all the toys, which was both enchanting and heartbreaking to observe.  Because of the time change adjustment, he faced immediate sleep deprivation which caused more seizures.  As the days and weeks passed, Lil J became more familiar with our home and bits of his memory returned.  But, we had to put the baby gates back up, use a toddler seat and ask him to wear a helmet outside.   We used a stroller to take him everywhere because he tired easily and we were uncertain if he might have a seizure.

In early October, our lives began to change.  Lil J had a normal EEG and crossed the 2 month mark without a tonic clonic seizure.  Our new nanny started and made an instant impact on our family.  She bonded with Lil J right away and taught him slowly about love and self-confidence and perseverance.   It is not uncommon to hear Lil J say to his brother “I love you and I care about you because you are my brother.”  (reminder – Lil J is 3)    This comes from the influence of our Nanny.     She has been a friend and a confidant to Deebs, who often has his “show” stolen by his little brother.  He trusts her and will often remark to me “I bet you wish the Nanny was here right now” when things are not going smoothly.  Though we were spending quite a bit of time at the “Boston Children’s Office,” things just seemed to turn around in a very “Mary Poppins” kind of way when she showed up.  

We have had a tremendous amount of support over the last year.  However, any parent will tell you that having someone come to your home on a daily basis to care for you, your children and your household is a game changer.  When that person approaches their work with the level of care and compassion that our nanny has, the result is transformative. 


On August 1, 2017 the four of us fell asleep in our own quiet and peaceful home.  It was the eve of an emotional anniversary for our family.  We all slept soundly, even me! We are approaching 12 months of freedom from the tonic clinic seizures.  

The next morning was an early day as Lil J headed to Children’s for a weekly occupational therapy appointment to address his gross and fine motor skill development and balance.  He is making great progress and will continue therapy in school when it commences next month.  These early mornings are tough and leave him exhausted for the remainder of the day.  His brother, on the other hand is a freight train of energy.  He tackles 4 hours of outdoor soccer camp, followed by 4 hours of rec camp + a karate lesson.  I returned from work at 7:30pm in time to read books and sing songs.  

The kids were so excited to celebrate my 40th birthday this year.  We’ve had plenty of family time this weekend doing all of ‘Mommy’s favorite things’; eating lobsters,  watching Mary Poppins,  having ice cream cake, playing outside, napping,  snuggling, and reading books.  Today, the kids decided to add an activity to the mix and opened a Lemonade Stand to raise money for Boston Childrens Hospital. 

They raised $32.25 in ninety minutes!  

 One year after our lives were turned upside down – August 2, 2017 – we are in a much different place. Epilepsy has changed all of us. It has made us more aware of each other, of life, and how instantaneously things change. My own voice has grown quieter in most settings. Life requires that I listen and observe more right now. There is so much to process and learn at all times. Both children are teaching us when to react and when to stay calm in the face of epilepsy and its effect on our family.  We have learned to ask for and accept help.  Our children are learning to help others and to give generously.  We are learning the beauty in imperfection.  A house left messy house on a Saturday morning while we all play together in our backyard.  A mismatched outfit carefully selected bya three year old who wants to be as independent as his brother.  A hastily thrown together meal before friends come to visit because because we lingered over a board game a bit too long.  

We have relearned the value of love. Of family.  Epilepsy has transformed us.  


(Hale Beach, July 2017)