Tag Archives: Mom

When you become your worst case scenario

What happens when you suddenly find yourself living the very situation that you were once grateful not to be in? When you look around and realize this is exactly what you once feared. This was at one time your worst case scenario. What do you do then?

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I happened upon this comment from 2010. Haley was averaging 1 seizure/month and I was just learning that there are people that have seizures daily despite available treatments.

I had no idea that would become us. I had no inkling that the bottom could and would drop out at any moment. I had no idea how many times this “mild” case of epilepsy would land us in life threatening, emergency situations begging for my daughter to breathe. Please just breathe. Begging for her life.

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Napping off a recent seizure cluster. Because even when you’re determined to give all that you’ve got, it’s important to refuel. Body and spirit. 

So I sat here, stunned into silence as I wondered what do I do now that I’ve become that person that I was grateful not to be? I was so grateful to have a child who despite her diagnosis of epilepsy was still living a full, happy childhood. She was developmentally on track and we were adding therapies just as a precaution against risk of delays. I naively thought that this condition would remain mostly dormant.

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And now 6 years later, coming off a scare where we were back to 50+ seizures daily for a few weeks, I don’t even know where to begin. So I guess I begin with saying that even though we are exactly where I was grateful not to be I have still found a way to be grateful for what we are. Even at her worst, at constant seizures, and coping with the harsh realities of a child that turns blue and the agitation from rescue meds and the need for constant supervision and vigilant attention to everything she does… “Is her eye twitching? Did she just jerk her arm? Was that a blank stare?” I am STILL grateful. Wholly, simply, completely. Because I have her. I know too many parents with empty arms that ache to hold their child, even through a seizure, if it meant that their child was still here. That’s not to say that I don’t have my breakdowns. I sure do. But I can’t live in them, there’s too much life to vigorously explore to dwell there. Seizing Hope, even when it’s hard.

So when I panic that we are bordering on feeding tube territory, and cognitive regression and losing skills like speech and she can’t walk steadily I will not get bogged down by fear and frustration. I mean, I will. But I won’t stay there. I will remember to be grateful. I will be grateful that I am strong enough to catch her as she collapses right now. As she grows older and bigger that may not always be the case. I will be grateful that despite the seizures she shows a tenacity and resolve and spirit that leaves me breathlessly in awe. I will be grateful for the friends and family who rally to support us. The ones who light the dark, and when they can’t be enough light they pull up a chair and will sit with me there in the dark until I’m capable. The ones who let me beat my fists against the wall and wail at the unfairness.

 

And I have learned something incredibly valuable. I have learned that when what you thought was your worst case scenario becomes your life you still get the chance to live it. And somehow when you get there there will be new things to fear, new lessons to learn and new joys to be grateful for.

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Haley, simply happy and excited that she lost a tooth, with no hesitation or care that the tooth was loose because of the clenching during so many recent seizures. Just grateful that the tooth fairy is coming.

Reflections

Reflections…because the most precious thing we can offer another person is the reminder that they are not alone. Even when they feel like they are. And in those moments, those reminders that we are not alone, is the secret place where hope resides. Not fickle and fleeting, but lasting and true.

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We walk hurriedly and excitedly through the Maine mall, more of a gallop really, Haley stopping to jump up and down every few feet. We are headed for the food court but more importantly we are headed for Rachel and Izabelle.

I strain my neck to the side, short as I am seeing through a crowd is no easy feat, worrying about whether I’ll recognize this dynamic duo that I know only from online photos and messages. Only from tears shared 2 states apart. My eyes lock on 2 stylish figures with adorable hats. The recognition is immediate. I crouch to point them out to Haley so she’ll know which way to head and we beeline for them!

Haley and Izabelle are both 9, both with uncontrollable seizures, both failed by pharmaceutical companies and both with Moms that would give the world for them. Hence this moment, this gift of giving them each a reflection of someone “like them”. Someone else “with seizures”.

Haley and I approach and I say her name like a question…Rachel? We embrace as the girls just look at each other. I am moved beyond words at the sight. They nearly instantly start pulling down their shirts to compare VNS scars. A mirror for one another of the pain and struggle that they both endure in place of childhood. And the emotion in Rachel’s eyes mirrors mine. This moment is a gift for all of us. Understanding, empathy, reflection. No words necessary. We are bound by all that we have seen and done. Bound by the countless hours of holding a seizing child. Bound by the nights full of sobs and helplessness. Bound by despair and grief but also the innocent, untainted, unfiltered joy that these girls bring to our lives.

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I have had other similar moments throughout this journey that has woven the fabric of our past 7 years. Seen this scenario unfold a few times now. It never loses its potency. It’s value. A reflection. A clasping of hands that “get it”, is a precious and rare gift. I hope to give and receive it many times.

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Nearly 2 years ago walking next to my husband, I carried Haley through the parking garage at MGH. We arrived hours early for our neurology appointment so that we had time to meet a family. Lisa, Lonnie and beautiful Maddie. Again, so many parallels to our stories. Connected by the intangible, brought together by fate. Another moment of being overcome by the blessing of these people in our lives. Another gift to give our girls and each other.

As Lonnie, Lisa, Artie and I tried to visit, my words pouring out clumsily, tripping over themselves with the relief of yes! I understand! Haley fired off questions about Maddie. What’s her favorite color? What does she like to eat? Does she really have “shesures” like me? I was transfixed by the way that Haley was drawn to Maddie, didn’t need words to communicate, she just swam in the pool of her beautiful blue eyes and read her heart, blowing bubbles for her, handing her toys and snacks and fussing over her when she seized. Their friendship and my friendship with Lisa has brought us both much comfort. Haley talks about Maddie often. Struck by her sassy personality and the fierce spirit she inherited honestly. And I could be leveled to my knees by the strength of my friendship with Lisa. A mirror in so many ways. My reflection. One that I don’t need to polish and clean because she sees the streaks and smudges of my heart.

During a hospital admission I sat in the playroom at the arts and crafts table. My eyes were only on Haley as she was seizing so often I couldn’t take them off of her for a second. Sure enough I saw that blank gaze and pulled her to my lap to keep her safe until it was over. With her in my lap my gaze wandered, expecting to find the usual looks of sympathy and horror. Instead I found understanding in eyes that met mine and a soft voice that asked “How old is she?” That gentle soul and voice belonged to Kristine, whom I would get to know over the next few days, as our daughters are just a year apart both have epilepsy.

Her daughter Delia captured my heart as she finagled her way around playing vivaciously despite being tethered by multiple tubes. She and Haley became fast friends too. Bonding in that invisible way over hide and seek and bowling.

I was sitting in the neuropsych waiting room while Haley underwent testing and I heard my name…Jill? I looked up and saw the kindest eyes. Stacy and her daughter Ashley. We were enrolled in the same study. Both of our girls were struggling still and we both lamented the lack of cannabis access and options. Haley sat across from Ashley while Ashley tried to eat her keto lunch (yet another reflection!) and Haley asked her excitedly “You have to eat safe food too?”

So when I sit in a doctors office for any one of the number of specialists that she is required to see, and I search the faces of other parents, I am not looking for sympathy. I am looking for a friend.

Finding even pieces of your journey in others is a heady, powerful, empowering thing. It’s like a safety net always out. I have met many warrior Moms that have understood the pain in my eyes and the circles underneath them. We share sleepless nights and hard decisions. I am grateful to have the opportunity to provide our children the same outlet.

Reflections. Mirrors. Seeing pieces of yourself in someone else. Broken in all of the same places. Knowing always that you are not alone.

Love to live AND Live to love

Sometimes love hurts. Sometimes love really does NOT conquer all. But it sure makes the journey worth traveling. Even if that means blisters on our hearts from trying to hold on when something else in the universe is forcing us to let go.

Love. Oh love. That word that means so much and so little all at once. That feeling that cannot be justified or reasoned with or rationalized away. That just is. That can bloom in the single instant in the empty space between eyes that lock and souls that connect. Or that can fill your heart with the sight of 2 lines on a plastic stick. Love. It can free you and bind you and make you feel infinitely happy or crippled with despair. Love. That which is so revered and special even the pain of it is to be treasured.

Love. Change one little letter and it becomes live. Do we live to love or love to live? Does it matter as long as those we love live?

Recently my world turned on its axis with a loss in our epilepsy community. Sweet Harper Howard, the daughter of Penny and Dustin Howard, lost her battle with CDKL5. Ironically it wasn’t the seizures that we all fear that took her. Much of the life that she gracefully lived was because of love. The love of parents that turned to hemp oil despite criticism from both the cannabis community which views this as an inferior option and cannabis opponents. But love. That feeling that swirls like a storm when you watch your child make unprecedented progress can drown out all of the other noise. Penny and Dustin stayed committed to the product and path that helped Harper so much. But ultimately Harper couldn’t live on love and she gained her wings. She is free and able, escaping the confines of her earthly body. But I am selfish. I’d rather have her here. Alive and loved. And I’ll never forget the moment that I read Penny’s words that Harper had passed. My hand flew to my mouth literally dropping my phone as my other arm flung out seeking purchase on something. Anything. I was sitting down but I doubled over, my body bent, bowing, under the weight of anguish and despair. The world is a little more muted, colors a little less bright without that sassy, fiery girl. To read more about Harper and her amazing family you can go here: http://www.hope4harper.com/harper-went-to-heaven-january-08-2016/

But love has limits. It can’t conquer all. And it doesn’t heal. If it did none of the children I know would be bound by their diagnosis. But that doesn’t make it worthless. And just to feel it is an experience worth the pain and fear we endure because of it. Because love itself IS the gift of life. And I am thankful to experience love and life even if that means embracing the pain, and sometimes loss, it brings.

That saying…”‘Tis better to have loved and lost”… I couldn’t agree more.

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Thank you Harper for the reminder. You will LIVE on in the LOVE of many.

As for me. Well, everyday I seek out an awareness of those seemingly insignificant moments that make me love to live and undoubtedly I live to love. And will continue to risk the pain of loss to love with all that I’ve got. Fiercely and with abandon. Because we’re not promised tomorrow. Not even when you seem healthy. image

Us versus Them-Taking bets

Us versus them- the divisiveness between CBD only supporters and whole plant advocates and patients and physicians.

There is this divisiveness within the cannabis community. CBD vs THC and then a small population of us in the middle who want one but advocate for all. Supporters of legislation that promotes a CBD only mentality- typically defined legally as less than .3% THC- assert that if their legislation saves one life it was worthwhile. They also like to claim that they are introducing these efforts in states that would “never” pass full access legislation. But there are deficits in these proposals that cannot be overlooked or skimmed over. Looking, for example, at states that are trying to pass CBD only laws but NO in state cultivation. Essentially they are saying we are urging you to commit a federal crime by trafficking this schedule 1 substance over state lines, but we wont prosecute you for giving it to your child once you are here. However if you get caught somewhere between that state and our state, umm, too bad. How does anyone look at that and consider it reasonable to create a law that STILL makes parents become criminals to save their children? Or adult patients criminals to save themselves? And while I cannot argue with the idea that saving even one life is great work, I assert that it is not enough. I could not hold my child in my arms at night knowing she was saved and feel good about that if I have to consider the children who are dying because I supported something that road blocks the efforts of another parent or patient to save their child or themselves because they need something different. And that’s where we all need to get on board about cannabinoids. CBD, CBG, THC,CBN, THCA, CBDA, the list goes on and on-and they are all different. Not better. Not worse. Just different. We have to stop trying to make one a hero and one a scapegoat and make them all accessible to everyone who needs them.

As if it’s not enough that there is this infighting within the industry, the us vs them mentality in the medical community runs rampant as well. Patients are urging doctors to acknowledge this treatment as a legitimate treatment for a variety of conditions. Doctors are skeptical, conservative, citing first do no harm and they are unsure of the harm cannabis could inflict. They routinely spout that we lack studies and knowledge about the long term effects of cannabis and many truly feel that they cannot in good conscience recommend something that might hurt the patient. However giving them all of the benefit of the doubt that they truly feel that way and are not just still buying into decades of manipulation and lies, does not stop them from doing exactly that with experimental treatments (seriously-check NIH for how many studies there are on experimental treatments for seizures. Treatments that we don’t know all of the facts about or long term consequences) and harmful, addictive pharmaceuticals that also have NO long term studies on their effects in children. We recently consulted for a VNS device for my daughter. It is not FDA approved for children under 12. When I asked the surgeon about that she said that is because it is too expensive to do the studies it would take for approval, and brushed it off as though that approval means nothing. If that is the case then why we are holding cannabis to a “higher” (pun totally intended) standard than our pharmaceuticals? I can open my medicine cabinet right now and read off labels and side effects that would curl your toes from medications that aren’t approved for my daughter at her age but that have been prescribed to her anyway. And no one stopped to consider first do no harm then, because you know what’s harmful? Seizures.The seizures that my daughter endures daily. The ones that steal her energy and have robbed her of a childhood and that I fear will take her life. That is what’s harmful. When I look at these bottles upon bottles of pills-both prescribed and over the counter- it makes bile rise in my throat to think that there deaths contributed to every single one of them. Even Tylenol can kill you. You know what has never killed anyone? Cannabis. So who is doing harm now by pushing these drugs down my child’s throat and risking her life by taking them, but refusing to endorse treating her with a plant even when every single chemically laden pill they can think of has failed her?

Patients are advocating for themselves. They are standing up to both doctors and politicians and demanding more. And feather are being ruffled. No one in either of those sectors likes to be challenged and they like control. I think the primary argument I’ve heard when reading between the lines on physician opposition is that recommending cannabis puts control of the patients treatment in the patients hands under all of the current regulatory models. But I have learned more in our 5 year journey battling this monster we call epilepsy from parents than I ever have from any doctor. When Haley’s doctor declared her out of pharmaceutical options I researched and found 1 drug that we hadn’t tried. And we are trying it now. And she is doing well on it. But it was up to me to find that information and present it to my doctor. They may not want to admit that we have patient directed care now, but I am willing to stake my life on the fact that most of the Moms I know-the Dravet tiger Moms and the Epilepsy warrior Moms, and the oncology Mama bears-they know more about their child’s condition and response to medications and have directed much of that treatment. They can list all of the side effects, even ones that doctors dismiss as not being a side effect, they see the correlations that doctors miss. Because of what’s at stake. Because of the depth of their love. Do you really think you need to tell me first do no harm to my own child? I’m the one protecting her from the harm you want to inflict sometimes!

So if it really is us vs them, my money is on us. Because our motivation is more than dollar signs, it’s measured in lives.Whole plant, full spectrum cannabinoid access to every patient who needs it.

Mommy Guilt

Mommy guilt is real folks. For all Moms, special needs or not…

I feel guilty about the light, typical things that all Moms relate to. I also feel guilty about the hard, heavy hitting stuff like the fact that no matter how hard I try to create a sense of normal, our normal will always be very, very different. I feel guilty about the concessions I make balancing safety and creating some semblance of childhood. I feel the weight of guilt every time she collapses and convulses and gasps and I know that there is a plant out there that may help her and I’m not doing enough to get it-I will always feel like I should be working harder, I should be lobbying harder, staging more political action, speaking out more. But newsflash here-I’m tired folks. And then I feel guilty about being tired and it’s all a vicious cycle.

I feel guilty about the fact that my 13-year-old feels isolated from her friends because they expressed that they are uncomfortable coming over because of Haley’s seizures. I feel guilty that the home I’ve tried to make a safe haven doesn’t feel welcoming to others. I feel guilty that I’ve played martyr for so long that I feel selfish even taking snippets of me time, even though logically I recognize that they are necessary, I carry that guilt. I feel guilty every time I pull up late in the drop off lane at school, or forget picture retake day, or forget to send forms in on time. I feel guilty about the decisions I have made even if I acknowledge that I did my best with what i knew at the time, it doesn’t change that the guilt sits with me.

I feel guilty accepting praise for things that I consider basic accommodations,like making hot cocoa that is appropriate for Haley’s restrictive diet therapy. I feel guilty for the experiences both small and large that my children are missing out on. I feel guilty that even when we do something as seemingly basic as go to a Christmas party my child misses half of it because she has a seizure that knocks her out for the rest of the evening. And instead of playing with her friends she passes out on the couch for the rest of the night. And I feel relief that she is asleep and I don’t have to chase her around and can leisurely visit while watching her instead of chasing her around, and then I feel guilt at my relief.

I feel guilty that I can’t be in 2 places at once and sometimes my kids have to miss out on things that are important to them. Totally unrealistic I know, but there it is anyway. I feel guilty every time I raise my voice or give yet another exasperated sigh because I am too darn tired to have enough patience. I feel guilty that I am so darn tired, even though I haven’t had 8 hours of sleep in, umm, hmm, I’m not really sure how many years.

I feel guilty that I’m not a better friend. I feel guilty when my friends are so wonderful that they drop off soup just because they see how much we are struggling right now to get through each day. I feel guilty that I cannot right now return the favor because i am trying not to drown in both obligations and sorrow. I feel guilty that I am so damaged that  cannot mask the despair that plagues me.

I feel guilty every time I shove a little white pill in my daughters mouth because the seizures have yet again started to cluster or last too long and are sneaking a little closer to life threatening. I feel guilty that I fear yet another holiday spent behind hospital walls.

I feel guilty every time I read another obituary for a child who died while waiting to access cannabis. I feel guilty every time I see yet another child hospitalized for seizures that might be helped if they only had access to a plant. I feel guilty when I see the pleas of parents on cannabis who are having trouble navigating the world of trial and error and dosing questions. I feel guilty that I don’t know more, can’t do more, can’t help more. I feel guilty that I cannot even help my own child. I feel guilty that I am pushing to schedule a surgery I don’t really want my child to have to implant a VNS that I don’t want her to get because I cannot wait any longer to do something to help her.

I feel guilty that every day Christmas inches a little closer and my to do list grows instead pf shrinks. I feel guilty every time I look at my color coded white board calendar that looks like it threw up on itself and wonder when I am going to squeeze in all of the other things I need to do into the days that already appear full. I feel guilty that I am yet again not going to get Christmas cards out.

I feel guilty that even though I try so hard-SO HARD- to find the beauty in this journey and to be grateful for all of the people in our lives and the moments of joy that probably outweigh the moments of despair I have days where I simply cannot. And then I feel guilty about seeming so negative when there really is beauty here. There is love, so much love. And joy. And heartache, but beauty in the ache. And there is hope. And guilt.

And then I feel guilty that I feel guilty.

Hope for Haley

There aren’t generally moments where you can look back and pinpoint the exact moment that your life changed. More often there is a gradual evolution. On the evening of 9/11/09 our lives changed in a single, horrifying instant when my healthy, vibrant 2.5 year old daughter collapsed on our stairs and stopped breathing in the first of what would become thousands of seizures. Every memory I hold in my heart is now attached to a label of before or after...

Within 2 weeks, after some hiccups, my lovely daughter Haley was diagnosed with a “seizure disorder”-words that are supposed to be more comforting to a family whose life has just shifted on its axis. Thus began the battery of tests and treatments. 33% of people with epilepsy are unable to control their seizures with currently available treatments. These treatments include medications, diet therapy and surgery…and a new evolving treatment, cannabis.

Haley began medication in  the hospital after seizing in the ER getting us the fastest service we’ve ever had at a medical facility. It made her drunk like, stumbling around and slurring all while experiences bouts of rage that summon the image of an angry trapped animal. When that medication failed to quell the seizures another was added, this one caused permanent liver damage. And the cycle continued, for every medication that didn’t work they simply added another one. All of them with horrific side effects that stole pieces of my baby girl a little at a time. In the 5 years since her diagnosis Haley has failed 17 anti-convulsant medications as well as steroids, some of them more than once and tried in varying combinations, all with the same cycle of slowly weaning on and slowly weaning off, and the accompanying despair upon realizing yet again that we had not found our answer.

In 2010 one of those medications actually triggered a worsening of seizures. Haley began experiencing 50-100 seizures daily some of which would last 90 minutes or more. After 2 back to back seizures of this length Haley, at age 3 was placed in a barbiturate coma for 14 days. Upon lessening her sedation I realized that my three year old had suddenly become an infant again. She had to re learn basic functions like how to hold her head up, eating, trunk control and how to walk.

After failing a handful of medications we also began a restrictive diet therapy in 2010 called Low Glycemic Index Therapy or LGIT. In the past several years Haley has gone back and forth between LGIT and various ratios of ketogenic diet in an effort to exert some control over her seizures. While it is beneficial enough that we continue to utilize it it has not been the miracle that we had hoped. And in the mean time Haley is denied the smallest joys like sharing a cupcake with a friend, or partaking in the pizza at a birthday party. Or even enjoying the snacks that seem to be the focus of every classroom celebration and holiday.

We live in a medical hub. We have access to technologies that are not readily available. Haley underwent additional testing to evaluate her surgical options. The consensus was that she is not a viable surgical candidate. Both the location of her seizure focal points and the number of them suggest that she would experience gross language and motor function loss and her seizure activity would not be reduced enough to alter her quality of life.

Her diagnosis has evolved as well, from idiopathic epilepsy or epilepsy with no known cause, to cortical dysplasia, to Landau Kleffner Syndrome variant, to a sodium channel genetic mutation. And yet with none of these has come the one answer we really seek-how to help her.

So we are left…more than 5 years into this journey, in a place I never expected to be. Without medical options and still averaging 15-30 seizures daily. There are days that the weight of this crushes me. I put my finger under her nose and count her breaths and remember to be grateful for each and every one. I watch her scream out in fear at the onset of each seizure and my heart breaks a little more. I watch my daughter, my lovely, precocious, fierce warrior, stiffen and convulse and grunt and turn blue and I face the reality that we live on the brink of life and death every.single.day.

Right now there is a new potentially promising treatment evolving for many conditions, including epilepsy. Medical marijuana or cannabis. Some of the anecdotal stories are nothing short of miraculous. But treatment is limited to those living in select legal states with limited access to the type of cannabis so many are looking for. It is the only thing that gives me hope-hope for her future, hope to meet her beneath the haze created by the pharmaceuticals, hope that she too will thrive.

And yet at the same time I fear that I am only setting us all up for another disappointment. I fear that I wont be able to access this treatment in time. And there are days when fear and devastation take over. When I am debilitated by my own thoughts and worries and memories. And yet I always come back to hope. Hope for the thousands of epilepsy patients living with uncontrolled seizures. Hope for the families of the 50,000 seizure related deaths that occur in the US every year. Hope for the patients who have control but only at the expense of dangerous and debilitating side effects. Hope that our family will emerge, no matter the outcome,stronger instead of broken.

Hope for Haley…

Dirty Little Secret

Every parent, every person really, struggles with finding their right balance between work, life and caring for themselves and caring for others.

I am a nurturer. I am a caretaker of many people. One of them happens to live on the brink of life and death daily. It takes a toll on me. Emotionally, physically, spiritually. Caregiver burnout is very very real. But that’s the dirty little secret that parents, special needs or not, aren’t supposed to admit.

Yesterday was a really difficult day. I turned outward to my support network. I unveiled my anguish, and kept it real. I put in black and white (actually a colorful bar graph but black and white sounds better) the evidence of Haley’s continually escalating seizure activity. And while the support was, as always, comforting, it wasn’t enough. I needed to schedule in a break down. (Break down to break through according to one wise friend)

The problem is that there is no time. There are still children to care for and feed and drive places and laundry and dishes and work and dog hair to vacuum and leaves to clean up and a garage to prepare for winter and and and…I couldn’t do it another moment.Those have to’s would just have to wait. So I dropped Haley off at school and headed for my sanctuary-for me that is the ocean. If you don’t have a place that instantly allows you to exhale, I highly suggest you start seeking one.

I allotted myself one hour of me time. I managed to disconnect for half of it (pretty good for me!). I wrapped a blanket around me like a shield and allowed myself the luxury of breathing freely, void of the ever present tension that lives in my throat. It was a windy day-my favorite kind at the beach. The breeze, the waves, they speak to my soul. They whisper contentment and calm my anxiety like nothing else, Sitting there just watching and listening, then walking the dunes, choosing the one shell I collect on each of these trips, all of it in complete solitude, yet connected simultaneously.

So, you…yes you. Stop looking over your shoulder, I really do mean YOU. It doesn’t take a massive amount of time, it doesn’t take money, it just takes commitment to admit when it is all too much and you need to decompress or explode. It can be a walk in the woods, a bubble bath, an hour of mindless TV…whatever your sanctuary is this is a reminder to utilize it. You are worth it.

The Story of Haley and Sofie-service dog extraordinaire

Getting a service dog. I get messages often asking about our process, our experience and the reality of life with a service dog.

First and foremost Haley’s seizure response dog (not to be confused with seizure alert dog-get there in a minute) is named Sofie. She is a border collie/Australian shepherd-ish mix that was rescued from a shelter at 12 weeks old. Our journey to a service dog was unique because we did not go the traditional route of fundraising the astronomical (but justifiedly so) cost of a service dog. Our journey started when Haley was referred to Make a Wish.

Initially I was ecstatic that Haley qualified for a wish, and then I grieved that she qualified for a wish. Make a wish grants wishes to children living with life threatening conditions. It was just one more reminder of how much we have to fear. But moving past that was the anticipation of what Haley would wish for. Initially she wanted to wish for a hamster. I gently explained that Santa might spring for a hamster if she wanted to aim a little higher. We had recently been to a Halloween party for kids with epilepsy in which a service dog was present. Haley was inquisitive and intrigued that the dog could keep it’s girl safe. So her official wish was “I wish for a doggie that will keep me safe when I have a seizure”.

And thus began our journey. We began extensively researching organizations as Make a Wish gave us carte blanche in choosing the right one. The first organization we considered yessed us to death. But once it came time to hammer out the details we quickly realized that they reneged on all of their commitments. We wanted a seizure response dog. This is a dog trained to respond (in Sofie’s case by ringing a doorbell and alerting us to the fact that Haley is seizing and then lying on her legs to keep her from injuring herself when she’s postictal). This agency, though initially saying they could provide that now informed us that they only rely on scent training and it would be a seizure alert dog. While this seems like a dream- a dog that alerts prior to a seizure?!- in some cases the dogs are unable to alert in real life settings even after extensive training. With this once in a lifetime opportunity we felt that we had to go with an option that was more of a sure thing. Just our preference and choice. Many people have wonderful, life changing experiences with both alert dogs and that agency.

We set about researching again- it wasn’t easy, many organizations had age restrictions that Haley didn’t qualify for-and began the process of applying for a dog with Domesti-Pups in Lincoln, Nebraska. Quite a journey from our home in Massachusetts! From our initial communication I found them heartfelt, honest and realistic. In addition to training for seizure response they also train their dogs in mobility assistance. This is imperative for Haley as she experiences weakness in one side and is often unsteady as a result of medications. Haley was accepted into their program. For the next 14 months we learned nothing-NOTHING- about the dog that was being trained in anticipation of being Haley’s service dog. Sofie spent that time training 12 hours/day, 5 days/week with an inmate in a correctional facility in Nebraska. On weekends she spent time with trainers and volunteers getting real life and public access experience that cannot be had in a prison. As hard as it was not to know, Domesti-Pups believes it is best not to divulge information such as breed or name in case the dog doesn’t work out. They are exacting in their standards for dogs that are placed. The year that Haley received Sofie they had temperament tested over 100 dogs to enter 10 into the program. There were 5 graduates.

Finally we set off to our 14 day training camp! Again Make a wish made all of the arrangements and were fantastically accommodating. Training camp was exhilarating-this was really happening, oh my God the instant bonding! And exhausting-constant, rigorous schedules of activities and training exercises to learn your dogs language. And depressing-upon witnessing Haley’s first seizure Sofie ran away from her. Through it all we were fully supported by Domesti-Pups staff and volunteers. They helped us work through our initial speed bumps and facilitated the bond that I still marvel at today.

Then we came home and life changed. My already gigantic purse became bigger as I had to accommodate dog gear like a portable bowl, water bottle, baggies. Errands became a constant stream of Oh! What’s your doggies name? And inquiries about Haley’s medical condition that varied from respectful, to curious to downright rude. Not to mention navigating the inaccurate and perceived legal rights of service dog access.

There are so many people that want service dogs and don’t feel they have the means to get one. Because of this, those of us who have them are considered the lucky ones. The chosen few. That assimilation makes it difficult to admit to, and sometimes complain about, the realities of having a service dog. Every inquiry I get I answer with this-It’s not all rainbows and unicorns. It’s hard work, and it’s hard work every day. But if you’re committed to it, it’s so so worth it.

My best advice for those beginning to navigate the murky waters of obtaining a service dog are be sure you are one hundred percent ready to commit. From the daily training, to the adjusting your expectations, to the instant red flag that you have a disability every where you go-be sure you have considered the reality of the commitment. Do your research. And then do it again. Where there are desperate people there WILL be predators. It’s not enough of a reason to miss out on how incredible this experience is, but check references, ask in forums, befriend other successful service dog teams and trainers. And know what you are looking for. Response dog, alert dog, other tasks that you desire the dog to do. And ask these questions up front, and ask again if the answer was unclear. Lastly-do not be intimidated by cost. Most organizations will give you the tools to fund raise. It takes a lot of effort, it seems daunting, but trust me it’s good preparation for the hours you’ll put into working with your dog. Do not make your decision based on cost.

Haley and Sofie have now been placed together for over a year. It has been a tumultuous year and their bond is stronger than ever. Is Sofie a perfect dog? Nope. She has her quirks and moments too. Are they perfect together? Absolutely.

In the presence of greatness

Social Media has become a powerful tool. Particularly for parents of special needs children. There is a sense of community and connection that is unprecedented.

Throughout the past few years I have had the pleasure of meeting in person many of the families and activists fighting to change an inherently unjust system and save our children along the way.

These meetings have filled my heart and fueled me and served to strengthen at my core my resolve to be part of this change. I have sat, stood and lunched with greatness. I have shared both tears and laughter as we shared in our grief and our successes. Some of which would never be celebrated by someone who didn’t “get” it. Like the significance of your child allowing you to hold her hand. Or walk with only that assistance.

Some of these people have become the people I now count among my closest friends. They are my village. More importantly they are Haley’s village. We inspire one another to do better, to be better, to fight harder, to expose more of our journey and our pain.

Grateful doesn’t begin to account for how I feel for these people who were once strangers just traveling a parallel path. As one of them wisely told me “Fate is seldom wrong”. Fate has brought us all together and together we will do better than we could have without one another.

To my friends, to my village, to the ones I’ve been blessed to meet and the ones I haven’t yet, thank you. Thank you for being on this journey with us. With all of it’s ups and downs, hills and valleys (that often happen in a single day, sometimes a single hour). Thank you for not just bearing witness to our pain but sharing in it. Sharing yours when you think it’s needed. And celebrating the successes together.

Thank you for the poignant moments and the humorous ones. For supporting me when I couldn’t support myself. For caring so intensely about a little girl and her struggle to survive in a world that seems intent on making that more difficult.

Thank you to the families that have bared their journeys. That have shared their most vulnerable moments in an effort to show others they are not alone.

Thank you to the parents and friends of Haley’s who help her feel like just another kid by including her when it would be easier not to. For teaching your children that different isn’t scary. That compassion and empathy matter.

And thank you to the activists who work too hard for too little reward. But use an image of a little 7 year old girl advocating for herself as fuel to drive a little further today than we did yesterday.

One love to you all. Our village. Greatness lives in each and every one of you and I am humbled and honored that you share it with my family.

Down the rabbit hole

On the evening of Haley’s first seizure a giant gaping hole opened up around me. At first I thought I was standing on the precipice looking down, but at the moment of her diagnosis, sheltered in what are supposed to be comforting words “seizure disorder”, I fell headfirst into the abyss. I didn’t fall far though, because I immersed myself in online support groups, and epilepsy community and their support pulled me up.

When Haley failed to respond to one pharmaceutical, and then another and quickly a third and fourth that diagnosis was altered to medically refractory epilepsy. I fell a little further down the hole. Not so far that I couldn’t start the climb out, but just far enough that I couldn’t see over the top. And so I began to seek out others with similar experiences. Ones who could hold my hand and we could take turns pulling one another up.

When Haley’s language delays began and EEG confirmed near constant seizure activity during sleep her diagnosis was amended again, Landau Kleffner syndrome variant. I fell a little further. But I gained a whole new set of supportive people who were living parallel realities. And it helped to block the fall.

When genetic testing revealed a never before documented mutation in a sodium channel gene I fell hard. Confirmation that my baby was never going to outgrow this knocked the wind out of me on the way down. And while Haley’s diagnosis was amended to Dravet like, it couldn’t be called Dravet so I wasn’t sure if I could find the support I needed to pull me up enough to catch my breath. Luckily the community is a generous one and we have found a home there and it helped me find a foothold and crawl a little way back up.

When we realized that Haley at age 5 had never been to the bathroom alone or played Barbies in her bedroom by herself, we decided to pursue a service dog. The community we have found amongst other service dog owners, trainers and supporters boosted me to where I thought I could see the path out.

And then we were told that Haley was out of pharmaceutical options, there was nothing left to try except a risky invasive surgery with best case scenario being a 50% reduction in seizures. With Haley averaging 3-10 seizures daily, that still left her with daily seizures and no quality of life improvement, plus a serious risk of loss of speech and motor function. I fell hard and fast. And I stopped even trying to claw my way back out. I just accepted life at the bottom of the rabbit hole.

And then I discovered medical marijuana and its potential anticonvulsant effects. When my state overwhelmingly voted to legalize it I found a foothold and crawled as fast as I could toward the top. Only to be knocked down over and over again as the state lagged behind in its implementation, as the lack of available strains became clear, and Haley’s seizures increased and cognition declined. But I found enough support to at least motivate me to keep climbing. For 2 years trying to access this treatment for my daughter I have climbed and fallen, brushed myself off, and started the climb again.

I have found a community of activists, advocates (is there really a difference?), other families, other patients and supporters. And I have never felt so supported. I have gained my footing, and I am climbing out with help from all of these communities of supporters. And sure, I have days, minutes, where I fall down, sometimes it feels like I’ve hit bottom again, but I’m climbing faster back up. And I am learning to extend my hand and reach for those behind me so I can return the favor.

So wherever you are in your journey know that however far down the rabbit hole you are there is always a hand waiting to grasp yours if you just reach out…With the help of cannabis and some amazing people, the top is in reach. (even in Massachusetts)

P.S.-See you Tuesday 10/14 at the protest! DPH building in Boston!! If you need a boost I promise you’ll find one among the community there.