It is not the load that breaks you down. It’s the way you carry it.
Lena Horne, Singer

It’s difficult to believe that my family has been living with Dravet syndrome for almost 19 years. I still remember breaking down when Elliot received his diagnosis at the age of four and I was forced to accept the reality that he would be on medications and face many challenges and uncertainties for the rest of his life. This wasn’t fair for him, his siblings, or us. This was certainly nothing we had planned for. It felt so overwhelming, particularly because of the many unknowns.  

After all of these years, I can truly appreciate this quote from singer Lena Horne – It is not the load that breaks you down. It’s the way you carry it. Here are some of the things I would like to share from my journey that I hope will help you find an easier way to carry the burden that comes with living with Dravet syndrome.  

Find your tribe
Elliot had his first seizure at 6 months of age, but I didn’t have the opportunity to connect with another Dravet parent until he was diagnosed when he was four years old. When I found my first online support group it was my lifeline. Everyone in that group understood his unique medical issues and offered helpful advice and support. Dravet syndrome is socially isolating. It is challenging to accept that you are on a different path than the one you anticipated and planned for. You need to find and surround yourself by a group of people in real life and online who are supportive and accepting of the additional challenges you face as a Dravet family. It may not include the people you thought it would, but it will include the people who will be there for the good times and the bad.

Make time for your partner and other children
It is a sad truth that couples of children with special needs face a much higher divorce rate than the rest of the married population. Issues can arise from lack of time together, financial demands and the overall stress in caring for your child. You need to make time for your partner as well as your other children as you navigate this new normal. I recognize that may sound impossible, but it is vital to the emotional health of your family. Look for ways to keep communication open. Make time each day for your partner, even it is just 10 minutes to talk uninterrupted or a date night at home. If you have other children, set up time for special outings alone with them. Take these opportunities to be talk about the challenges in living with Dravet and the emotions that everyone is feeling. Also consider professional counseling. Having a safe place where parents or siblings can discuss their fears and concerns, alone or together, will help each individual deal better with the situation as well as strengthen the family unit as a whole. If you don’t know where to start, reach out to your hospital’s social worker.

Count the wins, not the losses
Being a caregiver for someone with a chronic condition is challenging and stressful. Even though you probably don’t think so, you are doing an amazing job. Think of all of the things you juggle on a daily basis. Inevitably, you will forget a doctor’s appointment or miss a dose of medication. Instead of being so hard on yourself, give yourself credit for all of the things you do right.   

Some days you won’t feel strong – and that’s okay
Our neurologist gave us the sage advice that this is a marathon and not a sprint, but I wasn’t wise enough to heed it at that time and instead went into fight-mode. I am sure many of you did as well when your child received their diagnosis. Friends and family may comment on how strong you are when they see all that you do, and you may feel you need to be in order to meet your child’s needs. But, there is nothing wrong with sometimes feeling sorry for your child, yourself, and your family. No one would choose for their child to have to face all of these challenges. If you have a day when you are tired of being strong, you don’t have to be. Cry it out, wallow in it, binge watch trash tv, go back to bed – do whatever you need to do to get over that hump.

You can (and should try to) be happy
I spent a long time in this cloud of anger, sadness, and resentment, and that certainly took a toll on my husband and my children. I finally had to remind myself that this was the only life I was going to get. I could either continue to be depressed every day and live in this place of unhappiness for the next 30+ years, or I could make a choice to wake up each morning and be as happy as I could be that day. Of course, some days it is still impossible to be anywhere near happy, especially when there is another seizure or a major setback. But what I did learn is that happiness multiplies and it helps lighten the dark places. Elliot is one of the happiest people I know and if he can continue to smile through the many things he goes through, then the least I can do is try to keep up.

Make time for the things that bring you joy
I recognize that this seems impossible, but to be able to care for your loved ones you have to take care of yourself first. Allow yourself time for self-care. It is okay to be selfish and make yourself a priority, even if it is only for 10-30 minutes each day. Talk to a friend, read, listen to music, work out, meditate – whatever brings you joy. If you can, allow yourself to get away for an afternoon or evening and leave any guilt at home. Remind yourself of who you are outside of being a parent and a caregiver. Those are the traits that have made you a strong advocate for your child. And maintaining your physical and mental health will help you continue to adapt to changes and recover from setbacks along the way.

Empower yourself
I found it helpful to focus all of my energy on things I could actually control rather than dwelling on the things I couldn’t. With a rare disease of any kind, it is not unusual for patients or caregivers to sometimes educate the professionals they work with. There is a great deal of information and educational resources on DSF’s website that you can utilize and share with your child’s medical team, therapists, teachers, and loved ones. When you have the most up-to-date information, you will feel more confident in the choices you make for your child’s care and in navigating the healthcare system. I also found volunteering, first with another nonprofit organization and then with DSF, made me feel more in control when dealing with Dravet. I felt that even if I couldn’t do something that minute to help my own son, a combined community effort would certainly bring about changes and improvements in the field that would impact his overall quality of life in the future.

Cut some slack to those around you  
People say stupid things. They want to offer you comfort or help and just don’t know what to do or say. I have been told “God only gives you what you can handle” or “I don’t know how you do it”.  For your own sanity, try to remember that at the core, they are trying to connect with you. They are just doing a really bad job at it. There is an opportunity there to educate them and tell them ways they can help or support you. (Be direct and ask for that help!) In the same way we want others to show empathy to our child, it benefits our own mental well-being to show empathy to others. I have found holding onto anger only impacts you negatively, especially when there are so many things you can be angry about when it come to this disorder.

It is okay to let go of things that don’t matter
One of the few benefits of dealing with a rare disease is that it allows you to quickly break down what is really important. Recognize that many of the things you are worrying about don’t really matter in the grand scheme of things and let them go. As someone who is admittedly a Type A personality this was not easy for me, but it was liberating to cut back on obligations and to choose to spend my time on what was most meaningful for me. Let go of anything that is not serving you or causing you unnecessary stress and allow yourself to feel content with the priorities you set.  

Helpful Resources:

  • DSF Website – information on diagnosis, treatment and management of Dravet syndrome
  • DSF Parent & Caregiver support group – connect with other families on a similar journey with Dravet syndrome
  • DSF Family Network – U.S. families can learn about regional initiatives and gatherings to connect in person.
  • DSF Conference – this biennial event unites all groups committed to improving the lives of those with Dravet syndrome

All the best,
Mary Anne