death

A dear friend of ours passed away on Sunday and it just hits me how quickly things can change. Her death was unexpected and she left behind a Mother who depends on her daily and a new husband with kids-in-love. None of which could have imagined they would bury her today.

I’m in shock. My heart hurts. She was an Aunt to my own children-in-love, a sister to those I love.

God doesn’t promise us when our lives will end. God doesn’t promise us tomorrow. We are given only today, only these moments together until we are called home to the other side of things.

And it strikes me again, how quickly my babies could be gone from me. How easily these seizures could cause their lives to be gone from here. They are fragile and seizures are tough. Their tiny bodies can only handle so much.

I pray for their lives every day. I pray they will each see another day, here on Earth, here with me. It’s selfish of me to want them to remain here with me but time is so short.

I want memories and I want snuggles, love from them, shared with them. I want to embrace them every day. I want to give them a lifetime of love, that only Mommy can give to them.

Today we have control of the Epilepsy. Tomorrow, we may not. I never know when it will hit them, when it will tease me with the risk of their lives being gone. I never know when and I live in limbo as I wait for it to happen.

I cannot relate with the loss that Mother felt today as she said Goodbye one final time to the baby she spent her life loving. I pray daily I never feel her same pain. I surely would not handle it nearly so well.

So with a pain-filled heart, I find myself loving my babies a little more, sneaking nighttime peaks when I’m able to ensure they are happy and safe and yes, still breathing. I rejoice in the morning when they come to say “I love you, Momma”. And I cherish every moment, every breath, every day that we have together here on Earth before we must part unexpectedly to that next place.

I’m sitting here tonight, blown away. Earlier tonight another sweet angel was called to Heaven. This sweet boy had Epilepsy. He was only a year older than my sweet baby Laycie.

6 years old seems like such a short life. Laycie is 5. I cannot understand how a child can suffer such a thing and have brought God Glory in such a short time. Things are not for me to understand.

I pray daily for children, like my babies, who suffer from Epilepsy, among other things. I have so many people that I love who’s beautiful babies have this dreadful disorder. And I wonder why must our children suffer from this?

Another friend told about her day as an Epilepsy Mom. She was confronted by a woman who told her that her precious son has Epilepsy because of her choice to have tattoos. It was God’s way of punishing her. I say if that’s God’s way for doing something so simple then I guess everyone would be punished. And if Satan has a hand in it then that should be a simple fix!

Unless you have a child with Epilepsy or some similar debilitating disorder, you cannot understand what it’s like as a Mother to deal with insolence and stupidity when it comes to others who don’t understand. Stereotypes and stigmas surround Epilepsy. People truly believe that demons possess those of us who have Epilepsy. People think holding an exorcism will simply take them away. But that’s not how it works.

This disorder is VERY REAL. It’s real for all of us who daily watch our babies struggle to hold on for life. And it’s real for those of us who have to watch our children slip away, who have to say goodbye way too early to those precious beings that we love so much.

I cannot imagine what it is to lose a child. I pray to never have to know. But the reality is that my own baby could leave me just the way this sweet boy left the world today: in a coma induced from her seizures, never again waking to tell me “I love you, Mommy” or “sleep with me Mommy” or “I need some Mommy time”.

Tomorrow, I will make it a point to go to her therapy with her, to hold my baby boy, to kiss my eldest head and to hug my sweet artist a little tighter. Tomorrow I will make it a point to be there in the moment and be thankful for the blessings I do have because they aren’t promised but they are a gift to be appreciated. Never take them for granted and keep the family of the sweet boy who passed today in your thoughts and prayers.

God bless <3 p="">

Unexpected {Epilepsy Awareness}

Blown Away {Epilepsy Awareness}