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Why I Won't Let the Dark Days With Dravet Syndrome Win

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These past two months have been filled with some dark days. We are currently dealing with daily seizures, medication changes, diet changes, behavior issues, lack of sleep, cabin fever from being unable to leave the house much, jealousy from seeing the pictures on my newsfeed of everyone else enjoying their summer outdoors…it has been rough.

I don’t like the places my mind has been going. Where I normally find optimism, positive thinking and hope, I am now finding depression and sadness and hopelessness…mixed in with anger, fear and jealousy. While I normally look ahead to plan B,C,D and E, I am now getting stuck on the current plan we are implementing that is seeming to fail, yet again.

Instead of being grateful for the things we have, I find myself being resentful and wondering why life has to be so incredibly hard for my 4-year-old. I find myself dwelling on the fact that there’s a 1 in 5 chance that he will not make it to 20 years old. I find myself wishing we could escape all of these things for just one day — as if that would somehow make everything better.

I don’t like thinking this way. I don’t want to let sadness and fear and anger take over, because it clouds my ability to be able to see the happy and the good that lies in each day of this unpredictable life. My fear of the future takes away from being able to enjoy the small moments in the day to day. If I am hopeless, then that is like letting Dravet syndrome win, which is something I refuse to ever do.  

So, I made a conscious decision it is time to rally. It is time to recall those things that drive me forward, that give me fight. It is time to choose to be hopeful, optimistic and positive. Some may disagree. Some may say I am naive, that it will never get any better than this. But the way I see it is that this is my choice. I can choose despair; I can choose to be sad and overwhelmed. Or, I can choose happiness. I can choose to see the good. I can choose hope. And here is why:

I believe in scientific advancement. I have worked in the field of genetics for over seven years now, and I have seen the leaps and bounds that have been made in just a short amount of time. I believe we are on the cusp of a revolution in how we view illness and treatment, and I think genetics will be the key to understanding how disease works, and more importantly — how to fix it.

We have options. Yes some of them are scary. Some of them involve brain surgery, and some of them come with a list of side effects that seem longer than my best friend’s doctoral thesis…but we still have things to try. I believe where there are options, there is hope.  

I want to inspire others who are new to this journey. Whenever I talk to parents who are brand new to this diagnosis, I always try to insert a hopeful message. “There are treatments in the works that will be game changers!” “Your child will continue to surprise you, don’t listen to what others say they cannot do!” I truly believe these things.

Never stop researching.

Never stop celebrating achievements.

The things I once worried about so much have become so insignificant, and this has allowed me to focus on the small things (which you come to learn are, in fact, the big things).

Without hope, there may never be a cure. Think about it — if there are not parents who are hopeful and determined, who believe things could be different for our kids if we just push for an answer, then who will do that?There are parents who organize fundraisers to raise money, run foundations, and continue to research, ask questions and push the scientists, doctors, pharmaceutical companies, you name it to find solutions. They are the parents who retain hope for their child’s future. And hopeful parents are the driving force behind change.

I want my family to know it is OK to have hope. We have been blessed with an amazing support system. Our family cares so much for Shayne, and they will drop anything to be there for him (and us) during difficult times. Because of this, they have seen the true colors of living with Dravet syndrome. They have been exposed to the dark side. We don’t have to paint a rosy picture for them and pretend like things are fine when they are not. They know exactly what we are up against, and because of that, I want them to know I still have hope. Even though everything can change in one second, I am choosing to not live in fear. I want them to know that I ultimately believe things will get better, even though sometimes I let my weakness show.

Shayne watches my reaction to everything. When I am sad or angry or stressed, in his sweet little voice he’ll ask me “Mama, are you OK?” Sometimes I want to melt into a puddle on the floor and tell him “No baby, mama is not OK. Mama is afraid. And tired. Mama doesn’t know if she is doing a good enough job. Mama wants so badly to make this better for you, but she can’t. And that makes Mama not OK.”

But I can’t do that.

I don’t want him to see I am afraid, because I don’t want to give him a reason to be. During the bad seizures, I sit with him and rub his leg and tell him “It’s OK I’m right here. It’s going to be OK.” I know he can’t hear me, but I wonder if maybe subconsciously my message will get into his brain, and maybe that’s enough to help pull him out of it. He trusts me; I am his mom. He trusts if I say it’s going to be OK, it will. Now it’s time to start trusting myself.

And finally — the number one reason why I will reach down and dig up that inner strength, to push past this negativity and darkness: he’s worth it. He is worth every single second, and he deserves better than this. He deserves to have joy in his life. He deserves parents who are happy. He deserves a mom who is not afraid to love him too much, for fear that it will destroy her if she has to say goodbye to him someday. He deserves to have people in his life who believe things can, and will, get better.

Prepare for the worst, but hope for the best. Just don’t forget the hope.

Follow this journey on Our Journey With Epilepsy

Originally published: August 8, 2016
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