A fellow Dravet Mom just posted this beautiful, powerful poem today, and it took me by surprise how personally relevant it is to me... A sadness is woven throughout, but so is the joy of life.
This may surprise you, but I'm very aware that I 'suffer' from Dravet more than Destiny does. I'm a very weak person when it comes to my kids and medical things. It became apparent to me that my reaction and sadness was more a burden on Desty than the actually seizures when the first thing she'd say was "I'm ok, Mama! I'm ok!" There, I say, is my Angel!
It's taken me a long time to get to a place where, during a seizure I take on Emergency Management role, and I'm really able to smile as she opens her eyes and be happy everything is OK! And meet her where she is. (It took a complete perspective change. I must pat myself on the back...I'm pretty good at this now, and my "postictal happiness" is 110% genuine - this is, in fact, happening as I type this very post and she wakes repeatedly from brief but annoying seizures.)
Regardless of your spiritual belief, I hope you will be carried away by these truthful words, and see the emotional side of our lives with uncontrolled seizures and everything that comes with it.
Darkness Imparts – We Drift Away
Come take a walk with me and Hay. We’d like to introduce you to Dravet. Come meet Hay’s friends, hear their hearts. Then hold on tight as darkness imparts.
From Hay Hay:
My friends are many, of every type. Dravet cares not of age or might. One day we’re at school, happy and free…suddenly we wake up – what happened to me?! Our moms and dads look scared and sad. There are tubes and wires all over and in us. Doctors, nurses, and words we cannot understand. What does it mean to be in status?
Darkness imparts, we drift away.
We feel icky inside, even outside too. We just want to play and run like you. More pills to take now, our tummies ache. Uh oh! I can feel my body starting to shake.
Darkness imparts, we drift away.
Slowly returning – that one wasn’t too bad. We smile so YOU know we’re ok. Wish these tubes were out of me now. I want to get up, go outside and play.
We hear the doctors say Dravet a lot. Our parents talk about it too. I guess that’s what we must have? I guess that’s why we can’t play like you? Before we take another pill, or another needle they shove inside. There is something you all should know - especially you always there by our side.
Darkness imparts, we drift away.
I’m back again so please hear what I say, before darkness imparts and I again drift away.
I love every minute I get to laugh and play. I live as God intended each day to be. I take for granted not one single thing. Only angels can really do these things. Our physical bodies are different for sure. But our spirits are different too. We chose the families we did by design. They care for our bodies so our spirits can fly.
On the days we can, we play and laugh. The many days we cannot, it’s ok. We came here to help all of you - it has always been this way. We chose this life before we arrived, the hardships well understood. To our moms and dads, we love you most. We picked you because you are good.
We know it looks like we suffer, we know you wish better things. It makes us sad to see you cry, watch you worry day after endless day. That is why we tell you now, why we pray you hear what we say.
It takes an angel to care for one and only angels have Dravet.
Darkness imparts, we drift away. We’ll be back soon…
Until you see us smile again, love to you all from Hay Hay.
For Hailey and all her Dravet brothers and sisters.
Alexa (Hay Hay’s Mom)
- Posted using BlogPress from my iPad
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