I think that anyone who has a child with a rare disease has been met with a well-meaning, “I don’t know how you do it.” My response is typically that I do it because I love my son, so I don’t have a choice but to attempt to make his life the best it can be. But what I usually don’t mention is that the days that are most challenging for me are when my son is not loveable. 

It is easy to love a loveable child. Who doesn’t melt when their child runs up with hugs and kisses and tells you how much they love you? Or works hard to accomplish something and then shares those accomplishments with you? While Elliot has days like that, he also has a lot of unloveable days. I recognize that those days are not by his choice. It is hard for him to navigate his world. He deals with seizure activity, medication side effects, developmental delays, communication issues, compulsive behaviors, and more. But even logically knowing all of that, I don’t always do the best job in managing my own frustration. He can be naughty, disruptive, impulsive, and mean. And some days I have just had enough.

I have never been known to be the type of person who is concerned about the opinion of others, and that has served me well in my role as his mom. When he is overwhelmed he has been known to throw things, kick, hit, and scream. It doesn’t matter where we are. He doesn’t care about first impressions or social constraints. And, quite honestly, I don’t care about some stranger’s opinion on my parenting, particularly if they don’t know Elliot or understand his challenges. But what is hard for me in dealing with his behaviors is that they are just exhausting – mentally and physically. I think how many more days, months, and years can I do this? Particularly as I get older and weaker and he gets bigger and stronger. He deserves my love, no matter what, but living with Dravet syndrome is not for the faint of heart. 

I hope on your hard days that you recognize there is a community of Dravet caregivers that understands and hears your struggles. Here are some things that have helped me when I am struggling, and I hope they might help you:

  • Give your child your full attention. I am not talking about when they have thrown themselves on the ground and are kicking you and refusing to get up. When things are more peaceful, spend one-on-one time with your child doing something fun. When you are frustrated, these positive memories and experiences that you share together may help carry you through the rough patches.
  • Talk to other parents who live with the same challenges as you do. They have had similar feelings as you are having and can tell you what they did to get through. While this doesn’t mean their solution will be your solution, it could lead you to something that works for you and your child. This is one of the things that has helped me the most. I can share stories with other Dravet parents that would mortify parents of typical children. (Such as the time that Elliot attempted a FaceTime call from my phone to a researcher I had spoken with earlier in the day. He was naked, except for a hat. Fortunately, the call went unanswered.) It makes me feel understood and less crazy to hear that someone else has had similar experiences.
  • Manage your anger. Yelling, screaming, or spanking is not going to teach a typical child the message you are trying to convey. Doing so with a child who has special needs only instills confusion and fear. It also models inappropriate behavior which your child may adopt, making future behavior more difficult. (I speak from experience. Elliot has adopted a certain colorful phrase of mine that is inappropriate to use in general, and even less so when you are at the Taco Bell drive-through. Just another in a long line of my {read sarcasm here} proud parenting moments.)
  • Empathy is unconditional love in action. Your child has significant challenges and doesn’t process things in the same way as their siblings or peers. That is easy to remember when things are going smoothly, but when your child is in the middle of a complete meltdown it is hard to not get frustrated and react. Take a minute and shift your perspective. Think about your child’s challenges and frustrations and how they are usually doing the best they can.
  • Don’t beat yourself up if you lose it and yell at your child or if you need a break from them. It is fine to take a breath and start over. And, there are days you will start over again and again and again. Everyone has traits that take special effort to manage and can be really hard to live with. That compounded with the stress of our daily lives can lessen your tolerance in certain situations. It is okay to take a break and allow someone else to watch your child for a few hours or overnight so that you can regroup.
  • Allow yourself to grieve the situation. Your child may recognize they have challenges, but you don’t want your child to sense that you wish they were different. As uncomfortable as it may be, you should allow yourself the time to sit with those feelings and allow yourself to grieve. While you may never make complete peace with what is, it will be easier to move forward and better care for yourself and your child.
  • Seek professional help. While no one wants to add another medication, along with more potential side effects, if your child is having frequent outbursts or harming themselves or others, a behavior med may offer more help than harm. You might also want to see a counselor –  individually, with your partner, or as a family – to help you work through the emotions and stress you are dealing with.