November is epilepsy awareness month and I happened to explain to a parent at my school what SUDEP was. She was asking about Meara and she had heard of SUDEP. Concerned, she asked if Meara was at risk and I responded yes. I could tell that she wanted to ask more...
She is at a higher risk for SUDEP because the bulk of her seizures happen at night, while she is sleeping, and also because her seizures are not controlled.
I guess I don't speak about it because I honestly try not think about it. Every night, I give Meara a kiss before I head to bed. She's asleep and she doesn't hear me but I give her one last "I love you" for the day and expect to see her in the morning.
So I know the question that the parent wanted to ask me was "how do you live this way?" I live this way because I have no choice. Because Meara has no choice. No one did anything wrong, no one made a bad choice. This is what God intended for Meara, for Megan and I, for our family.
I will tell you this. The perspective I have is worth more than I could put a price tag on. Maybe I was already headed there with Ben, but Meara just pushed me to exactly the place that I expect to live every day. That is…never take a minute for granted.
I take one day at a time. One moment at a time. I don't know if Meara will see me grow old, I don't know how much time we have together. All I know is that I expect to grow old and play with her children one day. I expect to walk her down the aisle and reluctantly give her away to someone that will never be good enough for her (at least in my eyes). Well, maybe he will. He better be.
I will not waste a minute worrying about things that don't matter. I will take one day at a time and be grateful for this moment with her.
There are so many things in life to worry about. SUDEP should be at the top of the list for Megan and I. And although its always at the back of our minds I will say that I'm not going to waste a minute expecting it because she and I both need to live in the moment. Take nothing for granted and thank God for this day together.
Epilepsy is real, its frustrating, its exhausting. Both for Meara and for us. But it won't sentence us to a lesser existence. If anything, it has given us the wisdom to realize just how lucky we are to be her parents and to be walking this journey with her. How she decided to be born into our family is beyond my understanding but I will tell you that she is the greatest gift I could have ever received.
So, for epilepsy awareness month, or in fact, for all the parents and children living with a chronic medical condition please do one thing for them today. Live. Live as if nothing is promised and be grateful for each breath, each morsel, each sip, each giggle, or tear that you get to experience.
And…give a caregiver a break…they need it.