First published on The Dravet Syndrome Foundation site, June 21, 2019. 

Barb and John were one of the earliest couples that joined and contributed their story with Jake to the Network.

In 2018, I published a blog called A Blessing and A Burden. My writing was inspired by the milestone of my son turning 22, the emotions and challenges that surfaced as he aged out of school and its entitlements into an adult world, and what that meant for each of us. As we had already experienced many times, it was a turning point in his journey of living with Dravet syndrome that required acceptance and adjustment.

Just over a year later, there is time to reflect on where we are today, after that significant transition. My son is well into his new routine, and we are continuing to adapt into this new phase together. I am slowly and continuously evolving in my role as the parent of an adult with Dravet, just as I have adjusted and grounded myself throughout every earlier touchpoint of his life.

When I look back at the last 23 years, his journey with Dravet seems to have unfolded in series of stages. I remember those early years when the seizures began, full of fear, crisis and uncertainty. In hindsight, I think that was the most challenging time. I observe the same fear and despair that I once felt so acutely in the parents of young babies, as Dravet reveals itself. I see you. We have all been there.

At some point, gradually, there is often an adjustment. Seizures persist, stability is variable, your child is aging and growing, and though there is still confusion, there is also more clarity. You find your people and community. You find support and resources, leaning on the guidance and wisdom of parents who have traveled the same road before you. The realization that Dravet is going to permanently impact the life of your child and family slowly sinks in.

As your child ages, new feelings might arise. Fear and doubt about their future and yours. Wondering how and if your child will survive. How you will manage their care in the present and future. How you will cope as your child gets bigger and older. What will their life look like? Will they ever be independent? What will become of your life and theirs? You might look with unease at the older patients, particularly the severely affected ones, and wonder if that’s how your child will eventually present.

As older parents, many of us are keenly aware of the advantages that exist today that we didn’t have the benefit of, including an early diagnosis, better treatment options and outcomes, a robust virtual support network and advancing research. We also didn’t have the opportunity to see and learn from the lives of older children and parents. As is true for any person with Dravet, some of our children have grown to lead more independent lives, but many have not. We are sensitive to the fact that our grown children can instill both comfort and fear in seeing what lies ahead. It can be a challenge to blend the two worlds of the younger parents and the older, and to support the unique needs of each.

Sadly, Dravet doesn’t go away. In most cases, it does not get easier. There are days of joy, certainly, but there are also days when I feel I am hanging by a thread, wondering how much longer I can manage this parenting role that I am blessed with, yet often feel trapped in. Chronologically and legally my son is certainly an adult, yet in every other possible way he is a child who requires 24/7 care and is totally dependent on us for every single aspect of his being. A fully grown person who presents as a toddler, living somewhere in the gray area between childhood and adulthood with no clear path forward.

What I want to tell the younger parents is this. You will evolve. The fear doesn’t go away, but it won’t always consume you. As you have already done, you will continue to learn how to live with Dravet. There will be unexpected challenges all along the way, from infancy, to toddler, to childhood, to teenage years and eventually into adulthood. Thinking too far ahead will be overwhelming. Live in the moment and take each day as it comes.

Just as our children do, each of us as parents will evolve differently and in our own way. In this community, everyone brings something to the table. Everyone contributes, whether in a large or small, obvious or subtle way. It might be as simple as being there for a frightened parent in the middle of the night, or as substantial as raising thousands of dollars. The beauty is, we are all walking the same path and we are all able to be of support in whichever way our strength and capacity allows. It is compelling to watch the newer parents grow from being overwhelmed and uncertain to becoming supportive and knowledgeable, as they gradually learn how to cope and trust their instincts.

Age does not equal expertise. It equals experience and perspective that has come from years of struggle. I didn’t see myself here 20 years ago, and could not have envisioned my life as it looks today. Rather, I almost subconsciously grew as I needed to. The community of parents of adults with Dravet is a small but growing group. In this phase of the journey, our path and that of our adult child often feels as unchartered to us as it did when our children were born. We have learned many things over the years, namely how to cope and advocate for ourselves and our child.  We know the value of community. We know our value to the younger parents coming after us. We also know their value to us. Often, it is the parents of the newly diagnosed who are the most determined and driven to help move the mission of DSF forward. We all need each other.

Being a seasoned parent affords the opportunity to forge a path for the families coming behind us. As the adult Dravet population is growing, we as parents are recognizing and calling attention to the unmet needs of our adult children. Social, emotional, recreational and medical support is lacking across the board. Creating awareness of these shortcomings and advocating for greater resources is the best we can do to make a difference to affect change for a better future for all of our children.

The author, Barb, is a founding parent advisor to Courageous Parents Network. This post was originally published on Exceptional Parent.

 Several months ago, my son turned 22.  I felt grateful, lucky and blessed.  I also felt apprehensive and overwhelmed.  Like many other parents of children with special needs, it was a day that I dreaded, the day when my child would lose the entitlement of school and related services.

Reaching this milestone meant that he was continuing to beat the odds against a progressive disease and the prognosis of a limited life expectancy.  It also meant that my vulnerable, medically fragile, and fully dependent son had officially taken his final step into life as an adult.

Logically, I saw this coming.  Throughout his teen years, I threw myself into transition planning, creating a roadmap for what his life might look like as he moved from a pediatric to an adult world.  Just in case he survived.  I obtained guardianship, secured benefits, got him his own ID, and created legal documents.

At the same time, he continued to decline and lose skills.  He remained in palliative care and spent almost two years in hospice.  I signed medical orders for end of life treatment.  I chose a cemetery plot and met with social workers and a chaplain to discuss end of life scenarios and options.

For the last ten years, I have been planning for my son’s future while anticipating his death.

By choice, our son lives and is cared for at home.  It is a highly personal choice, and many considerations factor in to such a decision.  Having him at home, though, creates a caregiving burden that seems to only grow larger as he grows older.  The struggles are real and they are different from when he was younger.  Some I anticipated, and some I didn’t.  And I wonder, how do I as a parent reconcile my fierce love for my child with the very real burden of being a life long caregiver?

When I’m feeling particularly overwhelmed, I try to focus on the small gifts, the positives that have come with years of experience.

I have found there is an advantage to being a seasoned parent when it comes to dealing with anyone involved in his care.  I have learned to trust my instincts.  I have credibility with my son’s providers and am confident in my ability to advocate for his needs.  I am not afraid to challenge the experts when I feel it is appropriate.

The early days of crisis and chaos have evolved into a somewhat normal routine.  Dysfunctional to most looking in, but it’s our version of normal and we have learned to live well with it.

I am more emotionally accepting of my circumstance.  In a way, things have become easier over time, as I have stopped pursuing treatments and a cure as relentlessly as I once did, instead focusing my energy and approach to care on his quality of life.  Never giving up hope, but not living in despair.

I am grateful for the perspective that can only come with struggle.

I find gratification in helping the parents who follow me, and with a large virtual family, I do not feel alone.  Likewise, I trust that I will receive wisdom and guidance as I need and request it from those who have travelled this road ahead of me.

With the good, though, there are new challenges and emotions that surface as the years continue to go by.

Despite his age, my son functions as a toddler.  If anyone is familiar with the exhausting days of having a newborn in the house, that is essentially how it feels, still.  You are awake at all hours, responding to the needs of your child, with little to no time for yourself.  For most, this challenging time lasts for months.  For us, it has lasted decades.  My entire life is punctuated by his care.

As my child is aging, I am too.  I feel my own mortality and there is a strong feeling of vulnerability.  There is the unnatural and shameful hope that I will outlive my child so I know that I will be able to care for him for the entirety of his life.  An acceptable, more sustainable alternative remains elusive.

I am more aware of the importance and need for my own self-care.  The impact of living with chronic stress and exhaustion and full-time caregiving for many years is starting to take its toll.  I worry about my own health and about remaining strong enough to meet the demands placed upon me.

I have intense love and concern for my child, but feel conflicted.  I feel blessed and grateful, yet burdened and trapped by my situation.  I long for freedom from around the clock caregiving and responsibility.  I alternate between feeling like I am missing out on living my fullest life, versus feeling that I am right where I am supposed to be, doing the most important job I could ever have.  I feel guilty, as I am acutely aware that the loss of my son is the only thing that will bring literal and emotional relief from the weight that I feel.

My son continues to decline and lose skills, sometimes so gradually that I can’t say when it happened, other times so abruptly that I’m shocked.  He no longer has the ability or energy for activities that once brought him joy and pleasure.  I worry about his quality of life and of him potentially suffering.  I feel helpless, watching and waiting.  As he grows bigger and his needs intensify, it becomes harder to find capable and consistent caregivers to provide much needed respite.

My other child has moved through his own transition to adulthood, moving out of the home and starting a new life.  I hope that he feels free to pursue his dreams without worry or guilt.  My son feels his brother’s absence, but there is no way to explain so that he can understand.

As the entitlement of school ended, my son’s lifelong routine of activities and providers had to shift, at a time when he is more fragile and less tolerant of change. Services are contingent on state budgets and are not guaranteed.  I must fiercely and constantly advocate, justify and account for everything he needs.

The process of moving from pediatric to adult providers is complicated, daunting and lacks clear consistency and solutions. One by one, we have lost our long term, trusted physicians who knew us well.  The loss of history that comes with the change of providers is impactful on his care and my credibility.  It is hard to find trained and knowledgeable adult practitioners to accept such a complex patient.  Services can be pulled overnight due to age restrictions and arbitrary legislation.  The transition from pediatric to adult care and services can impact care teams, hospitals, drug trials, palliative and hospice care, and end of life decisions, among other things.  The solid base of support that we’ve had over the years is slowing falling away and leaving his care in limbo and increasingly on my shoulders.

I worry about sustaining a healthy marriage.  The awareness that we are partners in a very trying situation is never far from my mind.  In some ways, it has made us closer.  I am grateful for the love, stability and commitment that we have.  However, I am also aware that we live very differently than most married couples and that the statistics against us are daunting.  We are stuck living in the mode of “divide and conquer,” where one stays home, one goes.  One sleeps, one doesn’t.  A marriage of two has become a relationship of three with our child always present.  The “empty nest” feels unattainable.   There is an increased feeling of isolation as we struggle to maintain normalcy and carve out a life for ourselves, and as we watch our friends evolve into the next chapter of their lives while we do not.  I worry about what will happen if our child survives years beyond expectation or if he does not, and how much of a strain either occurrence will be.

Despite the constantly shifting nature of my circumstance, and regardless of how long or short the arc of my son’s life is, the bottom line remains clear.  My son is the most beautiful, simple and gentle of souls, my greatest gift and my greatest challenge.  He loves and is loved unconditionally.  More than anything, he has been my greatest teacher, and I view this time in his life and mine as another step in our journey together, as mother and son, caregiver and patient.  I believe there is a purpose, a meaning and a lesson to his life and to the role that I have in it.  I am sure that I am not alone in my experience. Through Courageous Parents Network and in my virtual community, we all too commonly and frequently grieve the loss of another child.  Each time, I am reminded of the fragility of my son’s life and of how lucky I am that he is still here, and I trust that we will continue to find our way.

View Barb and her husband John’s videos for Courageous Parents Network here.

Pat is a mother of four and grandmother of ten.  Jake is her fifth grandchild, and her daughter is Jake’s mother.  As a parent and grandparent who lives close to Jake and his family, she has seen and felt firsthand the challenges, joy and pain of watching her own child struggle with raising a child with complex medical needs, who requires full time, life long care.

Emma is a nursing student at Boston University, who works part time as a personal care assistant for Jake. Emma has cared for Jake for almost two years, since she was in high school, and is one of Jake’s favorite companions. Emma and Jake are close in age, yet worlds apart in their health and ability. With compassion and great instinct, Emma engages and talks to Jake as if he were simply a friend, and over time, they have formed an amazing, close bond.

Ed is a father of four and grandfather of ten.  Jake is his fifth grandchild, and his daughter is Jake’s mother.  Jake and Ed have shared a special connection since the time that Jake was born.  Jake has few words, but one of his favorites is “Papa.”  Jake and Papa have great understanding and love for one another, and any time spent with his Papa is happy and thrilling for Jake.

Charlotte is a student at Merrimack college, an avid athlete, and an aspiring teacher. Jake and Charlotte are cousins, and are only six months apart in age. Charlotte and Jake have grown up together and from a very young age, Charlotte and Jake have shared a close and loving bond. Inspired largely by her experience with Jake, Charlotte is interesting in working as a teacher and has focused her time and talents on working with children with special needs.

Here is what I would like you to know.  

We are mentally and physically exhausted. Often we have not eaten, slept or showered and we appear or at least feel disheveled. Of course, it seems ridiculous to even care, but some of us do. We are conscious of how we present ourselves to you and want to feel like an equal member of the care team. By default, we feel at a disadvantage and feel somewhat “smaller” than you, based on our appearance alone.

We wait and wait and wait for you to round. We plan our entire day around when you might come by, forgoing food, shower or a break. It’s that important to us to be there and be present. We are desperate for information.

I don’t care if you like me, though that is certainly preferable and helpful. It is also preferable and helpful if I like you. I care that you respect me. I care that you will listen.

I deeply respect your academic and clinical knowledge. Please, in turn, respect my parenting knowledge. Do not assume you know more than I do about my child’s diagnosis. Or, know what might be best for my child more than I do. You study this.

I live it.

Please do not talk about my child or our situation as if I am not standing right there.

I want to be included in your discussions as much as possible as they pertain to my child’s status and in making a treatment plan.

Any one nurse can make our stay that much better or worse. They truly make the most difference. The same with the attending physician. Everyone in between is just more people. The nurse, because they are our one constant.  They can be kind, gruff, our best ally or our most dreaded person entering the room.  The attending, because they make the final decisions, and we may or may not be on the same page.  If we know or are known to the attending, it is a huge advantage. If not, it takes time to develop mutual respect. You can make a positive difference if you help to bridge that link and act as a good communicator.

Please treat my child like a person, not a textbook body. Have empathy.

Please listen to what I am telling you. Often my instinct is important. Trust my feedback, observation and opinion, especially if we have been at this awhile.

Share your thoughts with me. I respect your knowledge and want to learn from you. Just like I want you to learn about my child from me.

I listen and hear everything and I read my child’s chart when I can. When I can’t hear what you are saying on rounds, I watch, trying to interpret body language. There is nothing worse than feeling left out of the discussion about your own child.

The smallest personal comment or gesture can make a big difference.

If you don’t know or don’t have an answer, or if you have bad news, be honest.  Be direct and be honest. Anything else is unfair and makes things worse. Showing honesty and humility makes me like and trust you more.

Please remember that I have a life beyond the hospital, including a spouse and another child.  Being pulled away from home, planned or unplanned, can be isolating and a strain.

I see and feel the pressure of the residents. I cringe for your sake when you make a mistake or are put on the spot, knowing that you are being constantly scrutinized. I watch how you all treat each other. I respect the relentless pressure of the job you are doing and what is at stake. I am curious about you. I suppose and suspect that you feel a similar sense of stress and fatigue – just for different reasons.

Sometimes I value the residents the most on the team. You are younger, fresher, often more current and tend to think outside the box. You are generally more accessible and open minded than more senior physicians. If you have or take the time to engage with a capable, interested parent, it can lead to the most effective outcome. That is appreciated.  I am always appreciating, even if I don’t always show it.

Thank you for reading, and for all that you do to care for my child.

Barb, Mother of Jake

 View Barb and her husband John and son Jake sharing their story [here].

A mom of a son with multiple progressive disorders (now age 18) talks about her pride in staying positive for her family and that her family is still together.

Parents of a son with multiple progressive disorders, who is now 18, talk about what they’ve learned about themselves over the years in caring for their son and keeping it together through the very difficult times. The mom shares how she has come to embrace the world that she has gotten to know.

A mom of a son with several progressive disorders talks about the value of having the conversation about the DNR.