Updated: May 23, 2019
I’ll never forget how it shook me the day my daughter had her first seizure. I think that day will forever be seared into my mind and heart. SO many question.
But the day that seems even more life changing than that one is the day we received our daughters official diagnosis. The day I received that phone call, and the world renowned neurologist was on the other end of the line--- I knew it couldn’t possibly be good news.
That doctor confirmed for us what had been one of our greatest fears over the last weeks. In the world of epilepsy- this was right up there in the top 2-3 worst case scenario diagnosis.
I was shaken to my core. I read the statistics. I read the death rates. I read about all the horrific issues that accompany this diagnosis. The friendly term “catastrophic” was the key adjective describing this form of epilepsy- Dravet Syndrome.
For days, and weeks, maybe even months, I mourned.
I truly felt like life was over, and life as we previously knew it was over. Life would now be different on many levels. I allowed myself to give way to all the sorrow, and anger, and questions. I found myself crying while folding laundry in the middle of the day. I found that each moment I held her felt bittersweet as tears leaked from my eyes. And there, I felt like I could just drown in it all.
But, I had another misconception. And that misconception, as I watched others walk this journey, was that at some point I would just be OKAY. Everything would just feel normal. I observed these other parents and to me, it appeared that their lives seemed unchanged. That somehow they had embraced these medical issues with open arms, and all was well.
I though at some point it wouldn’t feel like a struggle anymore.
At some point, I would no longer mourn the things I had lost.
At some point, I would just be okay with all of this.
And, now, three years into this journey--- I’m finding that it was a great misconception indeed.
Can you relate?
You see, with each struggling day, with each long seizure, with each ambulance ride, with each illness, with each milestone missed, with each minute spent dealing with the pharmacy, or insurance company, or physician’s office…..
I find that I have to grieve again.
I have to cope with our reality all over.
I’m not sure if that will ever change, if at some point a switch is flipped and all the world feels right again- the journey is still long- if that’s the case that would be fantastic.
BUT, if like me, you find your life a little shaken time after time.
If you find yourself mourning, coping, aching again and trying to figure out how to live life there.
Or feeling like you’re the only one in the world who is there….
This is for you--- an honest look at coping.
Coping with unfriendly news over and over.
Coping with realities of your child’s diagnosis coming to be.
Coping with how all of it seems to envelope every inch of your life.
Sometimes, coping looks like this---
Dishes left untouched for day…
Piles of laundry, unfolded.
A house left practically untouched.
Because the simplest task seems too much.
Sometimes, coping looks like stress eating a bacon cheeseburger, and large cheesy fries, and a large chocolate shake…
Knowing it won’t feel good later, but momentarily it does, so you do it anyways.
Sometimes, it looks like a short answer or a snippy comment to those we love…
Because we don’t know quite how to express the truth of how we feel…
Or we feel guilty…
Or we know that their pitty will feel weightier than them just not knowing at all.
Coping comes in waves, with each blow of a reality now shaken.
It looks like tears streaming while binge watching that Netflix series…
Yes, it’s sad, but you know the tears are coming from a much deeper place than what’s unfolding on the television.
Sometimes, it looks like motivation, a long run, a new project.
But, other times it looks like not wanting to move at all.
It looks like exhaustion…
And still the inability to find rest.
It looks like deep loneliness…
And still a desire to just be alone.
Sometimes coping looks like fear, worry…
Someone who can’t just let loose and have fun.
Coping is the business of life where we grieve over and over again…
And no matter how much hope we have, life just never feels quite right.
Coping looks like all these things and more.
But as we cope, and we share our truth, we recognize it’s so much more than a messy house, or an unmotivated moment.