Tag Archives: Dravet

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.