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.

I am no hero

I am no hero…

1.Please stop calling me strong. I am not strong. I can’t make it 24 hours without crying. I can’t fake a smile convincingly. Not only am I not strong, I’m not even strong enough to make a pretense of being strong. Nor do I want to have to. I value authentic pain over false pride any day.

2.Please don’t ask me a question that you don’t want to know the answer to. I broke down in public when I ran into someone I hadn’t seen in awhile and they asked how Haley was doing. I never know if people want the honest answer or the polite answer. I never know which to use. It’s like an internal debate every time I have to answer this seemingly innocuous question.

3.Please, for the love of all things holy, please don’t tell me everything happens for a reason. There is no reason compelling enough to watch my daughter endure this suffering on a daily basis. None. Nada. Zilch.

4.Please stop saying God only gives us what we can handle. I’m quite certain most of us have at one point or another felt that he/she waaaaaay overestimated our abilities. I just happen to live in a perpetual state of that.

5.Please stop telling me miracles happen every day. I don’t want to acknowledge that the only thing left is a miracle. Even though it’s true. Hearing that is like a knife wound to my heart- Every. Single. Time.

6. Please stop saying that you don’t know how I do it. Frankly, you would do it too. The thing about epilepsy is that we didn’t get a choice.

7.Please don’t give up on me. I know some days I can’t answer the phone because the tears in my voice are too thick to speak through. Please call anyway. I know I’m juggling a million appointments and obligations and holy cow! Christmas is in a few weeks! Please ask me out for coffee anyway.

8.Please don’t take it personally if I can’t answer your questions or if I answer them too thoroughly. Sometimes I can’t talk or think about anything other than Haley and I’m happy to expound on everything I think I know about epilepsy and service dogs and cannabis. And other days I feel like if I have to answer the same question I’ve answered a million times again my head will explode. If I can’t give you the answer you are looking for, feel free to ask me again another time.

9.Please don’t ask what I need or offer to help me. My answer will always be nothing/no thank you. If you see I need help with something please go ahead and do it. I will be immensely embarrassed that you saw my weakness but I will be humbly and incredibly grateful too. Other people are wonderfully able to accept and ask for help. I am not one of those highly evolved creatures.

The cliches and the platitudes, they are harder than silence. Silence at least conveys the gravity of Haley’s struggles. Let silence be your answer when there is nothing to say. I promise I’m ok with that. And don’t be surprised if someday you ask an innocent How are you? And I can’t hold it together enough to answer. I am broken right now. I’m held together with tape because I’m too tired to find glue and the cracks keep getting wider. And every day I resolve to be better, to do better, to shake the sorrow. And every day I fail a little more.

Every day that Haley lives, I celebrate that she’s alive while simultaneously mourning that she’s had to live one more day without access to the medicine that could be her miracle. After all, miracles happen right? (See #5)

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.

The Anniversaries We Don’t Want to Celebrate

Haley has been having a rough time. It’s no secret. Yesterday she was too tired to make it through the day at school. So we declared today a day off from school and started her morning with a (Low Glycemic Index Diet therapy approved) cupcake with a candle and sang Happy Wednesday.

But in reality today wasn’t just any Wednesday. It’s the anniversary of the day she was admitted last year to MGH for uncontrollable seizures. I remember clearly how devastated and afraid I was like it was yesterday. I was afraid because we had been in this same position 2 years prior with disastrous results that culminated in a 14 day coma and severe regressions. And we knew that Haley, even a year ago was out of options. We were lobbying our Dr’s hard for medical marijuana but with the program in limbo there was no access. A year later we are in exactly the same position. The lack of progress in the implementation of this program, the fact that no one in this state has shown any urgency or compassion for patients infuriates me. And Haley continues to suffer daily because of it.

If Haley’s seizures continue to escalate and she needs to be admitted again but without options left, where does that leave us? I’m afraid we may find out.

We all have anniversaries, dates, seared in our minds of events that we don’t want to celebrate. First seizure, hospitalizations, treatments, surgeries, ambulance rides, long seizures, intubations, sedations, tests. I knew this anniversary was coming. I thought I was prepared, but seeing the statuses and photos in my TimeHop app this morning reminded me that even when we prepare, we cannot predict how we will feel when these anniversaries come.

So this is an anniversary that we don’t want to celebrate. Instead we will light a candle and sing. Happy Wednesday everyone.

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.