For many people, the holidays are a time of anticipation – anticipation of the joy of family gatherings, sharing gifts with our loved ones and celebrating.
For our family, the holidays serve as a bittersweet reminder of how much our lives differ from those around us.
The holidays bring extra stress and excitement that serves as yet another trigger for kids like our son. Imagine having to calm your child down on Christmas morning because the excitement of opening presents is causing their brain to be overloaded. You see them zoning out and you know a seizure is eminent. You try to intervene before the seizure strikes, fearing that this one could land them in the hospital again, or worse…
This is Dravet syndrome.
Dravet syndrome is a rare form of epilepsy affecting approximately one in 15,700 individuals in the U.S. It is characterized by frequent prolonged seizures, developmental delays, speech impairment and motor/orthopedic issues. Comorbidities of the syndrome include dysautonomia, nutrition issues, characteristics of Autism and a high rate of sudden unexpected death in epilepsy (SUDEP).
Our 5 ½-year-old son has Dravet syndrome, and we never for a second forget that it is present in our lives. Every place we go requires an insane amount of preparation and planning. We have to ensure we pack all of his rescue medications, equipment, a full tank of oxygen, maintenance medications, diapers (since he still is not toilet trained), his adaptive stroller (so he does not have to walk too far), our handicap placard (so we can park close to avoid inclement weather or in the event he has a seizure and we need to get him to the car quickly), homemade food for his ketogenic diet (since we do not have the luxury of being able to grab something for him to eat while we are out) and now his seizure alert dog, who goes wherever he goes.
All of these supplies are essential even for a simple outing. This makes holiday travel a near impossibility.
As a family, all of our decisions are dictated by Dravet syndrome. If we ever do decide to take a vacation, we have to ensure that we are within reasonable distance to a quality hospital. We skip certain environments altogether because the risk of him seizing from over-excitement or over-stimulation or over-heating is just not worth it. Countless times our plans have been ruined due to the unpredictable nature of uncontrolled seizures.
We find ourselves in envy of typical families who can take their children anywhere without fearing the consequences it could have on their child’s health. We struggle to achieve a seemingly impossible balance between allowing our son to have experiences in life, yet always being cognizant of his safety and the limitations that are bestowed upon him by this syndrome.
His quality of life has become the foremost important measure. We attempt to balance countless and ever-evolving seizure triggers, limitations posed by a diet that severely restricts carbohydrates, and the behavioral impacts he faces being diagnosed with Autism, global developmental delay and intellectual disability. We have become researchers and advocates, constantly reading about new treatments, behavioral therapy, dietary changes and anything that has the potential to improve his life.
That is all before we even begin to worry about how much this life affects his little sister. This, too, is a constant concern. We see the worry in her eyes, and we know she does not understand why we cannot do anything to fix things for him. We see her innocence stolen from her as she is forced to grow up faster every day. I will never forget the first time she cried in agony watching her big brother have a violent seizure. She was only a year old, and it broke my heart to see the pain in her eyes. I know that feeling of helplessness she was experiencing; I live with it daily. Now 2 ½, our daughter has been dubbed the “little nurse.”
Children with Dravet syndrome have a compromised immune system, so this time of year brings additional challenges. A simple virus can easily result in a stay in the pediatric ICU. We almost lost him to a case of croup when he was just 18 months old. Several holidays past have been spent in the hospital. Now, due to the frequency and severity of his seizures, he has a nurse with him at all times, including during school. She is able to assess his overall health daily and assist us in the illness prevention precautions we must take to keep him as healthy as possible.
Dravet syndrome is 24/7, 365 days a year. It does not take breaks for holidays or vacations. In our son’s case, it does not even subside at night, as he experiences seizures every time he falls asleep. Even with multiple seizure alarms and detection devices in place, we still have him sleep in our room every night. We check his breathing constantly while he sleeps and tend to the multiple seizures that plague him during what should be a time for him to rest and recover. Each morning, we fear that this will be the day that we roll over to check on him, only to find that he is no longer with us. We have not slept in years; sleep does not appear to be in our forecast.
This time of the year is also difficult as we remember the children who have lost their battle, and the parents who have to make it through the holidays with empty arms. We hold them close to our hearts and their pain is our pain, because we know at any time we could find ourselves in their shoes.
We are not the same people that we were before Dravet syndrome entered our lives. We love deeper, and we are so thankful for every second that we are granted with our boy. Every milestone is a cause for celebration, knowing how hard our son has worked to achieve it. We are grateful for all of the things he can do today, knowing that just one seizure could rob him of all of it. We count our blessings, and we pray hard for a cure. We hold onto the hope that he may at some point know a life without daily seizures. That he may someday be able to experience the magic of the holiday season without us having to intervene for his safety. We continue to raise awareness, in an effort to have others see the many effects this syndrome has on our family.