Those series of moments that stand out from all the others because of the palatable difference in their energy, thick in the air. Joyous. Laughter. Clarity. Sweetness. So sweet my heart jumps. Tears in eyes. Awe. Siblings playfully teasing each other, laughter bubbling up. My son, understanding jokes and making his own. No frustration bc one can have a snack that the boy can’t have. Instead, Blake inquisitive about her ice cream, happy with his pathetic ‘cereal snack’ of 5 Rice Krispies. Magical moments when these siblings have a camaraderie common amongst others and rare between ours. Wait, what’s that? Fear? Fear bubbling up in my gut. Why fear? Why now? Because moments this sweet are so rare. This blissful energy, glowing in the late day sunshine streaming into our front window illuminating the smiles on my children’s faces. A voice deep within me, cautions me from delving too deeply into this moment of joy. Have I not read so many times how wonderful other kiddos were doing, how they were better then they’ve ever been, until that one seizure that would not stop, strikes. Before they just don’t wake up. FU Dravet. Don’t taint these moments. I beat these fears away and breathe to stay present. Stomp the synacism away. That’s what 5.5 years of relentless seizures, emergencies, sleep deprivation can do. I want to breathe in the magic of last night. Linger in his embraces. His laughter. So I will love it, even if it is bittersweet, because of its rareity. 💜
So, I cannot believe it has almost been a year since I was able to sit here and put my fingertips to keyboard and write! Oh, I have started the odd blog and had so many ideas of what I wanted to share, process and then 11 months go by of evenings cleaning up after kids, making keto-snacks, paying bills, sending in receipts to health benefits, etc and nothing gets written. I must admit, my heart pounded with excitement as I realized I would potentially have an hour to myself to write. So here I am – I never really left but I am back!
(I started this post a few months ago!)
It might come as a surprise to some of you, but we are proud to announce the arrival of our daughter, a little sister for Blake. She is now almost
three six months old (how time flies) and it is hard to imagine how life was without her. For so long, it was impossible to imagine how we could possibly have another. Life was just too hard.
Now what is your reaction to this news? Shocked? Pleasantly surprised? Do you think we are crazy? I think some (maybe most) silently thought that we were (some not so silently!). Were we not barely hanging on some days? Is Blake not still seizing dangerously and isn’t sleep already lacking in our house? Are our hands not already full with therapies and research and diets? Well, yes, yes, yes and yes.
But there was something nagging in my heart. I wasn’t done. We had always wanted more children. Birthing Blake at home, naturally, was one of the most empowering, fulfilling experiences of my life. And the day of his birth I knew I wanted more children. So to live in the limbo of knowing in our hearts that we desired to add to our family, yet knowing that even though we had taken every precaution possible – from both Jason and I stopping drinking months pre-conception, to not using any chemicals on myself or in the house (no hair dye, no painted nails (OK – for those of you who really know me, I know you are not surprised about the no hair dye and nail polish!)), to purchasing and cooking healthy foods always, taking all my vitamins, being fit and active, having great prenatal care, and even ensuring that the new house we bought before Blake was born was not close to powerlines – despite all of these efforts, when the cells of our son was forming inside of me, a spontaneous mutation took place and Dravet syndrome was the result. If something that random can happen to us, then who was to say it couldn’t happen again?
We did the genetic testing after Blake’s results came back – both Jason and I tested negative for the mutation Blake has. So it was what they like to call ‘de novo.’ It didn’t come from us. There was a small chance that somewhere hiding out in one of our germ cells was a mutation – the only way to rule that out was to use IVF and test the resulting embryos to ensure they were free of Blake’s SCN1A deletion mutation. Even though this would have given us 100% peace of mind, I knew I wasn’t up for this and if we chose to have another child, we would have to take our chances.
We did not come to this decision lightly (yes, it was a very intentional decision). We spoke to our doctor’s, Blake’s doctors, other parents, our own. Not all had the same opinion. One thought we were crazy, one said, “absolutely, go for it!” I remember my Dad telling me his only regret was not having more of us. Just us considering it was an indicator of where we have progressed in our journey with Dravet Syndrome. We have passed through the horror of discovering that our precious son could have something so terrifying. We have passed through the denial, the daily to then weekly round of doctors, specialist, therapy appointments, desperate to find some treatment that would help. Not to say that we are no longer seeking helpful treatments; I am just a lot more discerning of not continuing to pursue something if I don’t see great benefit for Blake and our family. We passed through the phase of letting go of the idea that things would get better and we didn’t need more supports for our family to survive; then through the long phase of having many unhelpful “helpers” until we found one that is the perfect match for our family. And then I passed through the grief phase of letting go of the idea that we could have more children – how could I possibly give any more of myself? how could I care for an infant while Blake seized? how would we manage hospital stays? how could I squeeze more love and attention to Blake’s older sister? to my husband? and where would I be in all of this? And how would Blake, my baby, possibly respond to me caring for another baby? I cried so often as I rocked Blake to sleep and as he grew knowing but not liking that he would be my last child. I remember reading posts of other Dravet families announcing that they were expecting or had had another child with awe – how could they do it? Where would they find the energy? Were they not scared shitless that if could happen again? I read a few posts from families who had had more than one child with epilepsy, or a child with other special needs. Could our hearts and health, our marriage hold up to care for another possible sibling with any kind of special needs?
Then, as I have mentioned in a previous post, we came to a point where we were stuck and came up with our new measuring post of making decisions: would this bring us and our family more joy? Well, neither of us could say we were done having children. And the clock was a ticking. We had the most support we had ever had. With Blake’s IVIG treatments, he has not been admitted to hospital for over 1.5 years! So, we had to answer honestly: YES – this would bring us more joy. So, we both prepared our bodies and hearts and when we were ready we tried. And, as a psychic told me 2 years ago, if we tried, baby number 4 would be waiting for us (we miscarried between Blake and Sadie). And, she was!
We were offered the opportunity to test prenatally for the mutation. We declined. I did, however, want our new baby tested as soon as it was born – hoping I could mitigate the trap an exhausted, emotional new-Mom could fall into – seeing things that are not really there, waiting on egg shells for the bomb to drop and for our life to explode, again. Since Blake was my last baby, that is what I remember babies being like. And it is easy to see something that is not really there. Even so, the test would could take up to 3 months to provide results. Well, I knew by 3 months something was up with Blake. I hoped we would get results sooner.
And After the excitement wore off, what is the first thing an older sister to a special brother says, when she finds out her parents are pregnant, “Will this baby have epilepsy too?” All we could do was hope, pray and know that we would love this baby regardless. When I asked her how she would feel if the new baby did have epilepsy, she responded, “sad Mom. I’d feel sad.”
And, other than a scare in the last month of pregnancy that the baby was not growing, everything progressed well. Somehow, despite working for the first time since Blake was born, tragically losing my oldest sister, and continuing to deal with Dravet and our daughter’s first year of school, I managed to not worry (too much) – my heart felt solid that everything was ok. Our children loved anticipating the new member of our family – Blake constantly lifted up my shirt to say, “hi” (and he still is!). Big sister hoped desperately for a little sister. And I felt so blessed to enjoy another pregnancy.
Baby arrived a week or so late, born at home so peacefully and magically – perhaps it was a further sign of the rightness of the whole thing. Nothing has brought me more confidence and connection to the amazing power and to a love of my body, and of my husband, than birthing our babies. And my older babies were right there, awakened minutes after her arrival to come and meet her. They were so excited and JOYFUL to greet her. Blake ran back to his room and brought his favorite books to read to her. Big sister cut the cord. We all cuddled and adored her together in our bed, in the wee hours of the morning. And a rightness fell over us. Dravet gave us a reprieve for a few days. And everyone has adjusted wonderfully. As I sing Blake to sleep, he shares his blankets and stuffies with our girl and she smiles and coos back at him. Big sister loves to haul her around, and make big noises to make her laugh.
A month after her birth, I got the call from the genetic specialist that she had no mutation on her SCN1A gene. I burst into tears. The moments when I let fear get in my way and I thought a normal jerk in her sleep was a sign, made me just about lose my mind. I kept my fears to myself, too scared to utter them to another human being. Life, at times, has and does feel really cruel as we watch Blake seize and suffer, and it felt suffocating to imagine going through such a huge loss, again. While I waited for the results, and as my hormones crashed, I had to fight off my fears, often telling the universe outright, that she was NOT a replacement baby. That now that we had a healthy baby girl, the universe did NOT have permission to take my sweet boy. The fear of losing Blake never goes away – rather it sleeps in a corner of my heart and when awakened, drops me to my knees. We had a baby because we imagined a three child family, not two.
When I look in the rear view mirror of my car, I marvel at the family we have created, filling the entire back row (and barely squeezing in!). And I know she wouldn’t be here if we didn’t have a third, amazing set of adult hands in the house helping us at all times. This baby just seems to know – when Blake is seizing, she is often handed around, or even laid down beside Blake while we all do what we need to do, without protest. She comes to appointments, and is often not even noticed if she is in her stroller and not pointed out. She does announce herself in lovely song and high pitches when the time seems right and it is just our family around. Our hands are full and we are tired and busy but it is wonderful. And she smiles more than any baby I’ve known. As she grows the middle name we chose for her, as a family before she was born, is more and more fitting. Baby “Joy” Arsenault has really been that – a JOY and a healing force in so many ways.
One night as I put Blake to bed, in the middle of me singing him one of his favorite songs, he said, “tank you, Mom.” I asked him for what. He said, “elle.” I confirmed that he was thanking me for his baby sister, and he said, “yes!”. I cried. I wept. I knew we had made the right decision. This time Dravet didn’t win. It didn’t stop us from listening to our hearts. What other people thought didn’t matter. And boy is this Mommy grateful that now there are three…..
I mentioned in a previous post (yes, I know, many, many months ago!), that we were granted a wish trip by the Children’s Wish Foundation for Blake. Little did we know the change in our life this wish would bring, and boy, are we grateful!
We were stuck. Truly. As a family we were stuck in the daily grind of being tired from being up with our boy through nights full of seizures (1-5, lasting from 5-45 minutes each, sometimes with a 30 min break before starting again), dealing with seizures during the day, managing his diet, his appointments, his sister’s school, work, etc. We felt frustrated that he couldn’t just tell us what his wish would be – to be honest, when asked, “what did Blake wish for?” I so badly wanted to say that he told me he loves race cars and just wanted to ride in one. Or to have a horse. Anything. But he couldn’t tell me. I longed to know. What if I guess and I am wrong and we’ve wished away his one chance to do something he REALLY would want?
After a particularly dark winter, and after not jumping on a chance to go with friends to a warm, sunny island because we just couldn’t trust that we could get Blake’s keto food across an international border, that the heat wouldn’t be too much, that the flight wouldn’t be too long, we felt trapped. And I felt fearful. What if we waited too long? Too often I open my facebook to see a dreaded post of another child in ICU, or worse, that had left this Earth too soon. We just needed to do SOMETHING. ANYTHING. Take a risk – if we can deal with his seizures here, we can deal with them anywhere, right?
And then we heard about this magical place called, Give Kids the World (GKTW). It was the shimmer of light in the darkness that we needed to make the decision to just go. To jump and trust we would be ok. Knowing that GKTW was designed with families like ours in mind – that they had access to medical equipment, would help stock our cottage’s fridge with Blake’s keto ingredients prior to our arrival, that they had a magical accessible playground with parachute shades! Seriously folks, these are the things that get me fired up. I could just picture us there, heat and all, and Blake able to play! Imagine! Pools and carousels and trains. If there wasn’t something there he would love, then we were in trouble. So we signed up. To Florida we would go. To hot Florida. To potentially over-stimulating places full of fun and adventure and every kind of potential seizure trigger imaginable. Ready and…..jump.
I wish it were that easy. Boy, traveling with this boy is a chore and a half! Preparing meals, ingredients, doctor’s notes, scales, extra batteries, medications, back up meds, rescue meds, spatulas, cooling vests, special sunglasses, strollers, coolers, seizure mats, video monitors. The list goes on. And we did it. Somehow, we checked everything off of the multiple lists I am known for and the day of the trip arrived. It didn’t hit me until there we were, sitting on a plane, as a family. It was SURREAL. Seriously. We all giggled with excitement (and a little fear). We were doing something ‘normal’ families do. We were not on route to see a new specialist or to an appointment. We were going to just be together, to have fun, to be away!
It was amazing to see what started to happen in Blake. Suddenly he started indicating clearly that he knew what was going on – he signed “airplane” and pointed to himself and said, “duck” (as in “Donald Duck”) and signed horse – because he knew we were going to ride horses! His grin was from ear to ear. He started taking selfies.
His sister has been constantly asking, when, oh when would the day come when we could go somewhere? Well, that day arrived – we could say, “yes – we are going! rather than the, “someday” response she was used to. What a gift!
I could have wept at every moment. I wanted to gift-wrap each precious moment and put them aside so I could savour them later. Seeing the excitement of the plane taking off and landing, getting settled in a rental car, the excitement of pulling into the magical world of GKTW village and staying in a villa. The kids eyes were opened wider than I’ve ever seen them. The feeling of the humid, warm air on their skin, the new sights and sounds. Their signs/demands for ‘more’ and ‘please’ and being able to respond! This was the gift of travel we had dreamed of giving our children that we had not yet been able to achieve. Fear had held us back.
Quickly, our unrealistic hope of a seizure-free week was dashed, with his first seizure peeking its ugly head upon descent into Florida and full blown once we stepped foot in the airport. Ok – so here we were, just in a different place, still seizing. We re-adjusted and carried on. What else could we do?
It is so hard to put into words what we and our children experienced that week. Having all the time in the world to ride the carousel for hours (which we did, thanks to the amazing volunteers at GKTW).No matter what route we would take around the village, Blake instinctively knew where that carousel was! Nothing gave him greater joy. No line ups. No rush. It was here, riding round and round on the pig and giant rooster and horse that he first said, “hi!” greeting those walking by like he was royalty (or said over and over to the amazing volunteers, who always responded!). It was here he spontaneously said, “hat” when looking at a purple toque (only a Canadian kid would pick that out in Florida!) It was looking at an aquarium full of spectacular fish that he said, “blellow” (yellow)! And after a fall when trying to run to more fun that he said, “owee!” All magic to our ears. We looked at each other with amazement. A magical change was starting!
We swam and played and discovered he LOVES princesses, probably more than his sister. Watching him overcome his fear of mascots, we watched him know, whenever seeing a character or princess, to backed into their legs, hug them and smile for the picture, often saying, “cheese!”
We slept in a new place and the kids rode horses for an entire morning. Mr. Larry, who brought the horses, fell in love with Blake, who signed, “horse” and “please” and “thank you” over and over.
I am in tears just thinking about it. Magical moments. The build up of preparing for, getting there, planning our days to try to make it work for Blake and his sister, getting through the rough patches (and there were many) to then experience the joy and amazement in their little faces. We took risks and although our choices could have clearly gone sideways, and almost did (what are we doing at Disney at 8 pm at night – when normally both children are sound asleep?), it always felt like everything, for once, was on our side.
We rode rides with our kids, sometimes Blake seizing through it – but he’d smile and sign “more” at the end! And we could because we had these incredible genie passes that took us to the front of the line every time! I have absolute and abundant gratitude for being cared for. Food was there when we needed it. Accommodations. Tickets. Transportation. Gifts for the kids. The Easter Bunny even made a special basket full of non-edible treats for my boy! Waking up in our villa and opening the shutters to the magical world of GKTW transported us out of our funk – our medicalized, difficult life. We experienced more JOY than we had in so long. And it woke up a part of our son that had never yet been stimulated.
At bedtime, our sleepy Blake, just before falling asleep, would try his hardest to retell us about his day. Of all the new sights and sounds and experiences. He would use sounds and signs and motions to tell us of the different animals he rode on, on the carousel and of the characters he had met. HE WAS TELLING STORIES! He signed “fish” and “throw” and motioned with his mouth eating – yes, we had fed the dolphins! His little brain was working so hard to process it all and it was magical to see our son start to change. He suddenly started feeding himself! Using the spatula like a pro. Bringing us his clothes or shoes or whatever we needed just so we could go do more! Our baby was suddenly growing up with all these new experiences. For every day of activity, he need a day or so of rest. We did what we could and that was more than we ever could have thought possible!
The blissful sounds of our exhausted children, laughing together in the rental van after a full day of Disney, is something I will never forget. The trip gave us hope. It gave us a lifeline that we needed. It seems to have brought our son to life. Everyone who has seen him since cannot help but mention the change in him. He’s adventuresome. He’s social. And boy, is he trying hard to be talkative. Our son. Our Blake!
I hope to update everyone more quickly of other news in our lives, treatments, etc, and will try my best to do so soon. Until then, I am including some posts of some interviews we did before and after the trip, as well as links from the Children’s Wish Foundation who granted us our magical week – who knew what a lasting impact it would have!
We are so grateful to everyone, including strangers, who donated or volunteered to raise funds for Children’s Wish Foundation. To family who helped drive us and all of our stuff to the airport, who looked after our house while we were away, who helped with the planning or who loaned us equipment to make our lives easier while away! We, with all our hearts, thank you!!
News Stories about our Wish:
The Fundraiser Page for our Wish:
Give Kids the World
Sometimes, in the day to day life of dealing with and living with Dravet, everything can seem quite dark. Another appointment, another test, another trip to the drug store to bring home and cut into little pieces the medicine we wish we didn’t have to give our son. I can count on one hand the number of times we have given ANY pharmaceuticals to our first child. I can’t count how many times I have liberally dosed my son with hard-core benzos desperate to halt stubborn seizures that won’t stop on their own, that threaten to take his life away. Or pieces of him away. That just sucks (sorry Mom – you always taught me to not use that word, but it does). Nothing cheery about that. At times it feels like our universe is pretty small.
So in the dead of our long Canadian winters, as we move closer to the elusive promise of the greening of spring and into summer, we started to make some key decisions. The first was a new ground rule that was percolating since the fall: from here on in we base all decisions around what will bring us the most JOY as a family. Living life aware of the all too possible expiration date of our family as we know it, it only makes sense to use this as a guidepost. Does this activity bring our family joy? Does this relationship bring us joy? It really cuts down to the chase pretty quick.
So, although we knew that we had been nominated for a Wish Trip for Blake with the Children’s Wish Foundation, we had no idea what Blake might like. We thought we should wait until we had more of an indication. I think they would give us 16 years or so to make our choice. However, coming through a long hard winter, we re-evaluated. Our family could really use some joy. December was REALLY rough. We’d never been on a family vacation since Dravet took over. It is nearly impossible to travel long or far with Blake’s keto diet, poor sleep, dislike for being in his car seat and the constant threat of seizures. Every attempt we have made has been thwarted and has ended with an emergency trip, either by car, ambulance or helicopter to the closest Children’s Hospital. Not only is it unthinkable to have one child flown away without you in a helicopter in status, but it is also heartbreaking to have your other child so disappointed yet again that a promise of fun has come to an end. With all this in mind, how could we possibly wait? What if? I don’t like living with, “what ifs”. So we asked, what would bring us JOY? Warmer weather, time together with no doctor’s appointments or hospital treatments or EEGs or blood tests or therapy for Blake, no psychologist appointments for Mom and Dad to stay sane, no long hours for Daddy at work, no school for sister, no snow to shovel. Just us. Just fun. Just simple.
When the realization that a new treatment we have been waiting and lobbying for might also become available soon, a treatment that we cannot cross the border with, the desire to make Blake’s Wish became stronger. I love you, Canada, but sometimes we need to escape the weather extremes to survive.
We are so grateful already to the Children’s Wish Foundation for recognizing that Blake’s condition is perilous. This wish has both cemented that fact for us but also been a relief that others actually acknowledge that too. Its reassuring that a community has tried to understand what Blake goes through daily, of what a marvelously resilient, mostly cooperative little boy he is, and that he truly deserves to just have some fun.
So does his sister. And this Mommy and Daddy could use a break too. Blake was honoured with a team, The Lifesavers, raising money for his Wish at Exile Island, a few weeks ago. They included all of us in such a lovely way, including Grandma and Papa, and besides raising money, truly engaged with us during the event. And so, as Blake has been signing daily, we will fly away in an airplane on a family adventure to enjoy every moment.
Today is also a pretty significant day. It is Purple Day – a day to increase awareness about epilepsy. I remember reading the flyer for Purple Day at one of our first appointments for Blake after he starting seizing. Its a way to make our world not feel so small. To talk about and teach and acknowledge epilepsy, to stand together as families, communities, organizations, to say this matters. Blake’s Baba has made and is selling 150 purple cupcakes! My Mom helped dye shirts purple last night. My daughter stood on the sidewalk in front of our house, with two of her friends and a sign, and all kinds of instruments, getting people’s attention, letting them know it is Purple Day soon, and then, point blank, asking for money to donate to the epilepsy foundation! In an hour, on a quiet street, they had $35 and people promising to come back tomorrow! What can/will you do? (if you are feeling generous, check out the links below!)
So, in the darkness of winter, I have been focusing on these points of light. When the love and kindness of others bursts through the gloom and brings us hope. It happens when there are visits or meals, sometimes spontaneous, from family and friends (especially those that come from great distances – thank you!). It happens when a community stands up and says your family deserves a break and we will pay for, plan and execute it. It happens when a group of guys play the Montreal Canadians Alumni team to raise money to support inclusion and family and friends come to watch. It happens when Blake has a great day, and when his sister and him run and play. Points of light. May they all come together and illuminate the good, the great, the beautiful. So that when we are in our darkness, our hearts still hold the light of hope. Even if its just a flicker….
Thank you for your light.
For more info, check out:
I can’t believe, once again, how much time has passed since I wrote. I think about the blog all the time. I struggle because I feel I should post more often to keep our family and friends abreast of our never-ending circus of appointments and progress and challenges and triumphs. How to manage this, I am not yet sure. I often sit thinking what I want to write about next, while I am rocking Blake to sleep for a nap (one where I don’t actually fall asleep first!). But then something happens, and I feel inspired to write. I feel the need to write and process. I have been waiting for this time all day. And first there were so many other things to do. You will understand in a moment. So here it goes….
Saturday was a pretty great day. I got together with a bunch of new friends and did a “big cook” day – where you prepare many meals in advance to have stocked in your freezer for those days you don’t have time to whip up a meal for your family. Our big girl came with me and Daddy and Blake had a boys day full of adventures. I came home and was looking up some dates in my trusty iPhone calendar and noticed some very intentionally planned events, entered on the computer calendar had not transferred magically onto my phone like I expect it to do. After doing a few Google searches to try to fix this one missing event, I proceeded to, with 2-4 clicks, delete ALL the data from my calendar – in horror, both on my phone and computer, going back three years and many into the future. If you have ever seen my check lists or wall calendars, you will understand that we are a well-oiled machine, capable and often required to schedule up to 3-4 doctors, specialists, therapy or school appointments in the span of just a few days – while keeping up with our other commitments, like paying bills, applying for funding, remembering to pee, etc. And, how have we managed this? My trusty mobile calendar connected to our home computer. I went into panic. The anxiety that took over was paralyzing. My default setting of self-depreciation (which I have worked very hard over the years to override) was in full swing. I screeched for help to my poor husband like a lunatic. Every tutorial lead to a dead end. I had no choice but to cry myself to sleep.
Why, might you ask, did such a seemingly minor event cause such chaos? I have been reflecting on that over the last few days. The “war zone” (how our home and the factors we live with have been described by various doctors and counsellors) in which we have lived for the last 3 years, 1 month, 14 days (I really don’t keep count – I had to, again, rely on my (not so) trusty calendar to come up with that) have taken their toll. Lack of sleep, stress, worry, preoccupation with researching, advocating for, providing a new treatment, therapy, etc mean that often my brain feels like mush. I have literally put everything in my calendar so I don’t forget, so I don’t drop the ball, so I can keep the pieces of our lives together. We live a life that is completely at the mercy of a crouching tiger that is, at its core, unpredictable. The best made plans most often are squashed by this monster that enters and takes over. Almost all plans are made with the caveat that we just as likely, will be a no-show. I understand that really, everyone’s life is just that way – a traffic accident, a flat tire, a forgotten lunchbox, can all set one’s day off. I know we can each, at any moment, suddenly lose someone we love. Knowing, however, that the chances of this happening for you, of losing a child, are dramatically more likely, is unnerving. And learning to cope with this constant upheaval, this unpredictability, the constant complete destruction of intended fun or connection or even the most normal “plans,” like going to school or for a walk, eats away at you. Seeing the look of disappointment in your other child’s face, or feeling it yourself as you decide to “divide and conquer” by having one parent stay home with Blake and one carry on with the plan, or most recently, hearing the wails of disappointment, postical, from Blake himself as he comes to and remembers what was supposed to happen, is brutal. Writing this I feel heavy and sad. But this is our life. And the ridiculous control I felt with my handy schedule in hand, provided me with a sense that I could manage this crazy life. That I could be somewhat ok in it. If I can know when the predictable events are going to happen and be prepared for those, it made the constant unpredictability more okay. Does this make sense? Waking up Sunday, not knowing what was coming for the week ahead (hoping I’d actually updated our wall calendar), at the mercy of the ‘Genius Bar’ at the Apple Store, whom I prayed could solve my problem, felt awful. I kept surrendering it, took deep breaths, and just played with and focused on the kids. My little-Mrs. Fix-it, wanted to close myself up in a room and put the pieces back together. I was mad that my already busy week would be busier, as I would now have to call each doctor and specialist that I could remember we had upcoming appointments with, to find out when I was supposed to be where. And once it was confirmed that the information was not retrievable, even by the guy at the ‘genius bar’ (talk about job-title pressure!), the surrender settled in a little further. The unease was and is absolutely still there. However, I forced myself to lay down the whip and instead try some self-compassion, to heal the stupidity I felt for what I did. I even questioned my intention for writing it here – was it an opportunity to simply beat myself up and shame myself further in public; or was it an opportunity to admit my imperfection and process the whole damn experience. Maybe to not feel so alone in it.
I know I am not the only parent sitting up, watching their child’s video monitor, listening for the seizure alarm that has been loudly letting itself be known too often lately, that finished putting their child to bed, kissed their head and made sure they knew how loved they are, somewhat fearful of dangerous night times, who then trek out to pay for the latest ambulance bill, prepare keto meals, cut and portion meds, and for me, gratefully, are waiting to sleep with the arrival of night care (aka – my sanity that comes 3 times/week). In that, I feel less alone. However, at 4 am, listening to Blake seizing during Jason’s night shift last night, and for the last many nights, I realize I am starting to feel angry about it again. Its not okay that Blake has to suffer like this. Its not ok that he cries out and then a seizure rattles and wakes and holds him in its grip. As a parent of a Dravet child, I think we are expected to come to accept a certain amount of seizures as ok – and status quo. We shouldn’t have to decide if a few absence seizures during the day is ok, but tonic clonics every night are not (meaning requiring some kind of intervention, of which we don’t have many options left). And so it goes…..
So maybe the deletion of our history and future – as dramatic as I am making that sound – from my mobile organizer is okay. Inconvenient as hell, yes. But the thought has come to me several times in the last few days that just maybe it is an opportunity to wipe it clean and start again. How can I do this differently? How can I see this with new eyes? How can I live fully in this – even if that means feeling all the awful feelings that come along with this – as well as the joyful moments too? Now I hear my boy crying because he wants his Mom or Dad – not a night nurse. See – there are some of those awful guilty feelings along with the knowledge that we too need to sleep. What a journey this is.
To end, I want to share with you some of the most beautiful words in the world. Sister and Blake were playing with each other as they were getting ready for bed tonight. As they cuddled on Blake’s bed, I heard Sister say, “Blake, I have to tell you something.” Then she whispered, “Blake, you are the best brother I could ever have.” [insert tears here]
Then, as I worked Sister towards her bedroom for bed she was talking about asking Santa for permanent hair dye next Christmas! Pink. I asked her if she knew why she has been seeing people with bright pink hair and explained it was to show support and raise money for cancer. So, she piped up, “then I need to ask for purple for Blake and I – but Santa will have to find a kind without glycerin for Blake – so we can raise awareness about epilepsy!” Yes, my wise, sweet five-year old who understands the keto diet. I think I may have a few other things for Santa to work his magic on.
Wow – I guess I missed the month of November! There has been a lot happening and at the same time, I feel like we have been on hold, waiting for someone, in another place, to make big decisions about treatment that could potentially help our son, and so many other kids in this country. More on this later. I’ve decided to just try to get this out and update you on a few things.
Where have I been? Consumed by paperwork and appointments and trying to volunteer with our daughter’s school, getting through Jason’s last work trip of the quarter. Paperwork for a nanny, for assistance with Blake’s expenses, for accessing new treatments for Blake, to appeal to our MP, the Health Minister, letters to Blake’s classmates’ families introducing him, for assistance with a new push chair or pediatric mobility device as my little boy is not so little anymore. Waiting to have news to share with you. Waiting.
I have been feeling quite heavy emotionally the last while. In the last two weeks, three Dravet child have been added to our list of angels, kids lost too soon to this unpredictable, devastating syndrome. There have been 12 in the last year, that I know of. 12! The blessings of being part of a worldwide virtual community that has connected us to other Dravet families are many; however, the heartache and reality check constantly provided is difficult. Another family’s loss is our loss. Every time I get the news, I feel numb, followed by difficult to control anxiety. I deep breathe trying to regain control, trying to be present, trying desperately to grasp the moment I am in as I chop vegetables for supper or respond to a question from my oldest kiddo or to an “up” request from Blake. I ache for the loss of the family, for the children whose brains and bodies have been under an assault that we can’t even fathom. The children who we all hoped we could find a treatment for, whose short lives were filled with far too many hospital rooms and not nearly enough time on earth to play and just be kids. Most of these children went from ok to gone in such a short period of time that it clarifies constantly that we just don’t know – if or when or how. I try desperately not to sink into the fear and the defeat and enjoy the hopeful moments. But reality lingers thick.
I mentioned in my last post my trepidation in beginning another drug wean. I am happy to report that in 5.5 weeks, we were able to wean Blake completely off of the valproate (VPA) that he has been on for most of his short life (PLS note that this was a decision we came to with out physician and we are still being monitored closley through the process).
It has gone much better than the pheno wean; however, as time passes from the last of those red-orange pills passing his lips, we are seeing major mood-swings, sad crying spells, some seizure activity – likely all caused by his body rebelling against the reality that another dose just ain’t coming. Before this, we witnessed a miraculous few weeks of better balance, a happier boy, a more expressive boy and of… NO myoclonic clusters or absence seizures that required patching of an eye in attempts to control them. Incredible. Yes, those seizure types emerged while he was on the drug. Now, did the drug cause them? Was it the progression of Dravet? These are the questions with no answers that we live with constantly.
Yesterday was a good and bad day. My husband’s work Christmas party for kids was finally moved to a time that made it possible for us to include Blake and go as a family. However, in the last week, our reprieve from Blake’s myoclonic jerks and absence zones ended. They have progressively gotten worse over the week. Multiple factors are at play. An ear infection discovered Friday (with no outside indications of discomfort – these kids have incredibly high pain tolerance), started antibiotics (which have always wrecked havoc for Blake), weaning of VPA completed, added supplement called Carnitor in attempts to increase his ketones, and an upcoming full moon. Full moon, you laugh! No, really. A full moon seems to universally be tough on these kids. Or, do we chalk the change up to Dravet? So in the midst of all of this, we attempt the Christmas party – the kid deserves to have fun too, and to not just have to stay home. Well, the night before he was rattled all night with jerks and cries that kept both him and his Dad awake.
He looked so bloody tired and pale. And he was SO excited to see the Merry-go-round. He LOVES horses. He kept pointing, making his sound for horse and signing “please” as we waited for the gates to open. The smile on his face was priceless, as he rode up and down on that horse.
Jerks started full force. Eye patch on = some relief. He struggled through – but just like every kids there, he wanted more. However, unlike Jason’s colleagues kids the same age who were running about, talking with excitement, he required a ride in my Ergo carrier (which is getting too small but still extremely necessary), the patch, got no spray-on tattoo or face paint (can’t tell if there is glycerin in it – a keto no-no) or candy bag or treat. We each took turns riding with our oldest daughter, who was full of excitement and is so used to one parent caring for Blake that she took no notice. She wrapped her protective little arm around his neck on a few rides together, watching him for us so that he could have a chance to ride. Continuing our failed attempt on behaving like a “normal” family, we agreed to have lunch with other families. Blake went down hill. Myo clusters led to a complex partial seizure that finally got the best of him. He collapsed in my arms postictal, in Boston Pizza, while the other kids coloured, enjoyed their pizza and pop and worms in dirt. We got him in the car to go home, and I felt like I’d been hit by a train. Exhaustion from the facade of being ok – mostly put on for our oldest so she could have a good time and then for those around me – so on top of Blake’s seizure they didn’t have to deal with a mother, distraught and run down, losing it in public. I used to be an extrovert. Pre-kids in our dating days, Jason pulled off the highway to take a picture of me under a road sign that read, “Optimist Road.” That was me. However, reality has worn me down. Try as I might to count my many blessings, to give to others knowing that natural but fleeting high of service, to pray and to trust, to focus on things like yoga and breathing rather than the jar of antidepressants that I’ve had sitting on my shelf for months, I still feel stuck in quicksand that threatens to gobble me up. At a time of year highlighted by social gatherings, I struggle to be around others. I feel foreign, uninformed of much of what is happening in the rest of the world, lacking the skills for small talk. I can talk about anti-epileptic drugs, ketogenic diets, seizure types, therapies, advocating we are doing, the answers we are waiting on pins and needles to receive. I don’t want pity. I don’t want to break down in tears in every conversation. I just want a damn cure. Or at least a treatment that will provide him some relief.
I sit completing this beside my postical son, sleeping in his bed after a brutal tonic clonic seizure. The cumulative event after being with him all night, either whimpering or crying out before a series of jerks – which continued through the morning. He woke at 5 am exhausted, signing, “eat.” Keto requires a consistent schedule for his meals. So Mommy had 2 hours to kill. He cried his little heart out, threw himself backwards narrowly missing the corner, woke his sister. It goes against everything in me, as his Mommy, to not feed him when he is hungry. To nourish him. To answer his requests. Is he really hungry? Maybe – he was awakened most the night from seizure activity. Or was his brain simply confused? Perhaps. And then, despite myos every 30 second to a minute this morning, he found the strength to play hockey with Mom and Angie, and minutes before his seizure, ran joyfully in a game of chase he started, running to his room to get his favourite book, “Panda bear, panda bear, what do you see?” (thank you, Baba), pushed a few of the animal sound buttons. My Momma-dar went off and as I rounded the corner, I saw a seizure double him over, jerking movements so intensely fast and strong I could barely lift him to his bed. Response mode takes over: run for rescue meds (two types, as we have a new emergency protocol in place in case he goes into status), my phone to track the seizure, house phone for 911. And we talk to him and pray and tell him to come back and wait. And his little body and brain take over and for those moments my little boy is gone and I wait for him to return. I pray for his return. When it ends, I’m thankful. And then he rests and I pray he is all there when we wakes.
The psychic warned me December was going to be rough. As the first week and a bit went by I thought we were getting away with something. Things were not half bad. Maybe we could really enjoy this Christmas rather than living on high alert or in emergency response. Looks like she was right. Again. As Christmas approaches, doctor’s go on vacation, offices close, all potential progress for another treatment halt. But Dravet doesn’t. It is excruciating watching days pass with no progress, to be patient. Dare we hope for more? The old Joelle sure wants to; however, this momma’s heart is not sure it can take another blow.
Well, I’m pretty sure if there is a golden rule about blogging, I have likely broken it. I imagine it is important to stay current and to not leave your blog stagnate for almost a month without even some short updates or antidotes to keep your followers interested. If that is how it should be, I’m hooped!
At the end of the day, when the house is quiet, I scan my “to do” list (I usually have several running lists on scrapes of paper on the corner of my counter), I see that there are calls to return, family to update, etc. Although I crave human contact and interaction, I have nothing left in me most times to reach out, at this, the quietest and most ideal time of day (when there are no bums that suddenly need to be wiped or crisis averted!). When we have not been heard from in a while, some might assume things are really rough, and we are not up to talking while up to our ears managing seizures. This is often true. Sometimes I would rather not share if I have nothing positive to say. And sometimes, in my sleep-deprived, worried state, it is hard to see beyond exactly where we are to hope for better days. Or, perhaps we have not been in touch because we are caught up in moments so wonderful, so blissfully free of seizures, of medicine, of worry that we might just be lapping up the sweetness of spontaneous laughter or games of chase around the house. Even if it lasts for just a moment.
Our lives are made of moments. In the beginning, I often wished people had insight into what most of our moments were like. One moment we were just a regular family, with a baby and a 2 year old, tired like most young families, but happy. Then in the next moment all hell broke loose and my baby was unresponsive, limp and seizing while in the bathtub with me and life as we knew it was over. Just like that. Being naive and hopeful, we tried to resume our regular lives and patiently wait the 6 months for the MRI after our first 4 day hospital stay. It was, of course, just a one-time freak event, right? We could never imagined what we were up for.
Now, almost 3 years into this whole seizure business, a typical day in our house is made up of any combination of these kind of moments: Waking with hugs and kisses (and maybe some random screaming by 3 or 5 year old) and getting oldest off to school moments; guessing what keto-kid might eat and weighing and measuring his food moments; he-ate-the-meal-joyful moments or he-is-screaming-and-refusing-to-eat-and-we-now-worry-of-the-effects-on-his-ketones-and-seizure-control moments; laughing and playing and watching the Wiggles moments; myoclonic jerks and absence starring so bad that we need an eye patch on now moments; lots of cuddle for several naps moments because constant seizure activity tires out little brains, combined with fatigue from anti-epileptic drug medication moments; medicine three times a day moments; playing catch or with any kind of ball moments; siblings fighting over toy moments; kids cuddling on the couch moments; frustration and fits because he cannot express himself verbally moments; he just mimicked big-sister’s name and got the two syllables right and we all happy dance moments; 5 or so jerks in a row followed by a fall and a tonic clonic seizure and emergency response mode moments; older sister throws a fit to get equal attention moments; fun happy family play moments; more doctor appointment moments; listening for the seizure monitor and watching the video monitor through the night moments; or snuggling with our boy all night half asleep on seizure alert moments; praying for some relief moments; staying up too late researching new treatment option moments.
Do I dare write this (it is amazing how superstitious – aka – desperate I’ve become to not break a good thing)…..we are having a few days with less seizure moments strung together than I can remember in the last while. Ironically, we wait for these clusters of good moments to really pull the rug out from under it – we start the med reduction moments. I have avoided, put off, feared this time all summer, and now into the fall. I wanted him to enjoy his birthday after all – and not be in withdrawals (yes – that’s right folks – just like any regular addict experiences when coming clean). Then he was having too many seizure moments to risk changing anything. And here we are, hopefully on the eve of starting a new, promising treatment and before we do, it would be advantageous to be off as many meds as possible (our all time goal). But along with such reduction comes a lot of undesirable moments: irritable, angry outburst moments; long, difficult to stop seizure moments; crazy nocturnal cluster seizure moments; no-appetite refusing to eat only effective keto treatment moments; headache, aching moments; crying sobbing moments (by boy or his mother); needing help to sleep all day long moments. Do you blame me for avoiding these kinds of moments ahead? How do I give up the wonderful, belly laugh moments of today for what will almost certainly be many not so wonderful ones? As I write this my boy is already fighting to stay asleep (I’ve already been in once to get him back to sleep). I feel like a horrible mother for dosing him daily with theses substances that now, as I start to wean, will cause him such pain and discomfort. Drugs that I don’t know have ever really helped. Drugs that we, however, in a state of desperation, eagerly tried hoping that it would finally halt the out of control trajectory we were on. The only thing bolstering my will to start another wean is remembering the moments post-wean when his development suddenly progressed, how his sweet, loving, wonderful personality became ever more apparent, how he was suddenly so much more balanced when he walked. I want to meet my boy. Not the one in a fog, dulled and ailed by side-effects. But my clear boy. Just wait to see my happy dance moment when I can throw our pill cutter and daily dosing jars out the window (into the trash, of course!).
And all the while we are having these moments, you are with your family, in whatever state of craziness you have in your life, experiencing you own moments. In our dark moments, our feeling very isolated and alone moments, I admit we often wondered where everyone was. Why were we often so alone in these crazy, sad moments? Again on a day when I was questioning the purpose of this blog, I ran into another kindergarten mom, who’d known us since last year at playschool. She’d just viewed the blog – she was teary and told me how shocked they were to learn of Blake’s condition – they thought he simply had epilepsy but everything was well controlled and we were ok. I’ve thought about this interaction a lot since then. How could anyone simply understand what we are going through if they were not or had not gone through it themselves? And how do you simply explain in a quick, hall-way conversational, “how are you?” that you are on the brink of falling apart and that your son is seizing all the time? I’ve watched the lack of understanding quickly fall away and be replaced by a look of trauma as people witness Blake’s seizures first hand. But how could I expect anyone to really understand or worse yet, wonder why they are not here with us, in this mess, to help?! In the worst moments its almost impossible to even know what anyone could possibly do. But its amazing what a delivered meal, a hot coffee, a surprise visit can do. The change of energy in the house is relief in and of itself. And, if I can, through this blog, give insight into our moments (and those of other families experiencing similar moments), then it is worth it. If our daughter gets more playdates, if more people want to learn how to manage seizures and ketodiet and therefore feel comfortable taking Blake out or having him over, great. And if I just get it all off my chest and get to reflect on all our moments, good and bad, maybe that’s ok too.
No, not the breastfeeding kind of let down. – More like the – I’ve been holding my breath for a month waiting for a positive response and then get a negative one – kind.
I’ve been meaning to add a new post for over a week. And life kept happening. I watched with wonder as the number of views and visitors to the blog soared since I posted the video, amazed to see it being viewed in over 12 countries, over 600 times! That came with both a feeling of excitement and the worry if I had done the right thing, starting this blog, posting such a personal video, exposing our raw reality that not many people have understood (or tried to). How was I also going to follow-up on that? Being exhausted 99% of the time from night shifts with Blake or the emotional exhaustion that goes along with living prepared for an emergency at all times, my thoughts do not often flow as they once did. I go flitting from one task to another, often forgetting where I started! Then the reality of trying to coordinate Blake’s care, caring for Blake, parenting and playing with our daughter, making our own meals, making Blake’s keto food (which he is not eating well – that will come in another post) and life in general leaves little opportunity for the combination of time for a coherent Mommy to sit down uninterrupted, to write. So here I am, when I should be trying to nap, writing this little post. Not to say I feel coherent. Just to say, I’m still here.
This week was a hard one. Our daughter started it off sick. Blake slept two nights almost through the night – never a good sign – usually the first sign of sickness (and as of yesterday, he is). Then, I saw a psychic (call me crazy). She’s been bang on about a lot of things. And she just happened to touch on a reality that lives with me every moment of every day and every night. The reality that I am likely to outlive my son. It is a thought I hate, a reality I beat off with a stick but one that crawls up in the dark moments and haunts me. Ever since reading about Dravet Syndrome for the first time, it is clear that these kids are up against a monster, one that can attack even when everything seems to be going “well” (again, a topic for another time). And in an instant they can be up for the fight of their lives. Even if they “win,”often much is lost in battle – speech, skills to walk, eat, potty training, breathe unassisted, etc. Often its like walking up 2 steps to be knocked down 5. And they get up and fight again. And again. And sometimes, they don’t win.
As this reality has been in my face all week, I have been struggling along. Its like living with a timebomb that you know is going to detonate, that you hear ticking away always, but never knowing when. It is an intolerable reality that is our reality. A reality I cannot imagine. But one I am living. And, in order to find a way to force myself out of bed in the morning, when I would really love to crawl under, pull the covers over, sink into the darkness that constantly lurks around me, that I have to pull myself out of every moment to be here for my kids, I have to force myself to be PRESENT. As a friend reminded me (as many have), we are not there YET. Blake is here now. We have been given this moment. I don’t want to waste the moments we are given terrified of the moments I might never have. Close friends have already lost their beloved children. I’ve still got mine. For now. Be PRESENT. Be PRESENT. Be PRESENT.
Then, Blake’s playschool, the one I chose after visiting every possibility last winter, got cancelled due to low enrolment. It was the perfect little place for him. Quiet, small, focused. He was just getting into the routines, doing amazingly well: finding his shoes, responding to songs, starting to share. Now we start again. I’ve visited one possibility and see my only other one Monday. Finding a place that is willing to really take Blake’s needs into consideration (like changing their centres so that Blake is not constantly seeing something he wants (take Playdough for instance) and being told, “no”), that isn’t too full, busy, in a classroom that isn’t cluttered, isn’t easy. Fingers crossed, Monday goes well.
Then, after holding my breathe since mid August, I got the call I hadn’t even let myself consider. We have been working an a way to gain access for Blake to try a new treatment, one that holds great promise. And if we could get it through this route for Blake, then we would open the door for the other Canadian kiddos that desperately need it too. Everything was perfect. We had a plan, suddenly support people to make it happen, a doctor who was actually willing and eager to sign the forms and try. I stayed up many nights crafting the application. I arrived at the doctor’s office the day after he agreed, before they opened, forms ready. The nurse and I sent positive energy and prayers out as we pushed the send button on the fax machine. Then we waited. I visioned the approved fax coming in, Blake starting the medicine, it working, others gaining access to it, documenting our success so we can then achieve the next levels of approvals. A week letter we got a letter requesting more information. That had to be a good sign, right? So we reworked things, explained, and again, pushed send. And waited. And visioned some more. In the mean time, I visited our MP (Member of Parliament) and started some other advocacy work. Wednesday at Blake’s almost weekly doctor’s appointment, we discussed how this 2 week wait must be a good sign – they are really considering it. Then as I ate supper with my kids Wednesday night (my husband has been out of town all week), I get a call from the doctor’s office. Seeing his number on call display, my breath caught. They had promised they would call as soon as they heard anything. I had fought off the urge to call and check every day, several times a day (ok – I’ll be honest – I called a few times!). I heard it in her voice immediately. The “I’m sorry” tone. The “is Joelle going to be ok” tone. The “I don’t know how to say this” tone. SH*T. SH*T. SH*T. How could they? How can they deny my son, and all of these kiddos, something that is technically already approved. And how do I fight the darkness now, that has been inviting me all week into its depths, when the one thing I had been holding onto hope For, was dashed. Now, I have a lot of fight in me when it comes to Blake and his Dravet siblings. But it felt like the drain plug had been pulled and all my umph, all my energy, was gone.
So that, in a not-so-short nutshell, is why I have yet to write my meaningful, insightful post that I intended to write. Actually, one of the reasons I didn’t start this blog sooner is that as much as I would like to be, I am not the super-inspirational, always positive, seeing the bright side, pinterest perfect, faithful Mom that I though should be the only ones writing these things. I am just me. Doing the best I can with what I have everyday. Somedays, that is better than others. Somedays I feel somewhat normal (especially when I have had time to drink a whole cup of coffee and maybe even have a shower!). Somedays I just may burst into tears when I get a call like Wednesday night, or when I see my daughter ride her two-wheeler, or when my son wraps his arms around my neck. Its in my genes. But so is being a fighter. Fighting for what is right. Here’s hoping for some rejuvenation to my much worn spirit for the many rounds to come.
So, day 2 of this blog business.
They say a picture is worth a thousand words. So, to start off I’ve decided to share a video I recently made of our journey with Blake. Another thing I have been meaning to do for the last three years. It was a difficult process going through our pictures and videos and realizing how many were NOT of our little boy just playing and progressing, but instead were a documentation of our baby seizing and struggling and of DRAVET. It is one thing to say, “my son has epilepsy (or seizures, or Dravet Syndrome).” It is another to witness it. To live it. To imagine being this baby’s Momma, or Daddy or sister or Aunt or Uncle or grandparent.
I hope this video provides a window into our lives, into what an amazingly resilient little boy Blake is (as are all the little Dravet Warriers), and some perspective into the progression of Dravet. Through this I hope more hearts will be opened, understanding will increase and through that, more support will flow to much needed research for treatments and a cure.
I have been told this video can be difficult to watch. Please be prepared to see Blake seizing in the video – choose an appropriate time to view the video (although seizures never seem to pick an appropriate time to happen – that is our reality)…..
Here I am, starting something I have been thinking about doing for the last three years. I am a little nervous about this whole blog business. However, after the first few months of experiencing our son’s epilepsy, I decided there was no value to secrecy – to hiding the new reality we faced as a family. If we were going to get through this, we would need support. We would quickly discover who would be there to stand with us and those that would not.
Our life has been forever changed and in those dark moments, those moments when unknown words like “Dravet” came into my awareness from seemingly no where, it was the blogs and videos and websites of other parents that both confirmed my worst fears and acted as sources of comfort and understanding. They provided me with information to take to our countless doctors appointments, aided me in getting the genetic testing done that no doctor wanted to fight with us for, and helped me to know we were not alone….
I have a few intentions for this blog: to educate, to keep family and friends informed of Blake’s current status (something that I have been less than perfect at doing), to encourage your support of our work to change so many things for the better, to act as a bit of personal therapy to process all that is happening, and, just maybe, reach out to other mothers and fathers desperate to not feel alone, who are trying to understand what is going on.