This Disease Called A Blessing
They keep telling me I’m a blessing.
That I’m lucky to be alive.
That although I’m sick I’m blessed to be here every day.
I’m blessed to spend time with my kids.
And although people tell me this everyday like it is some sort of affirmation, I don’t feel blessed.
I don’t feel blessed when I walk to my car and my heart beats so hard and so fast that I feel like I’m the star of the movie Blow.
But I am always reminded at least my heart beats… a blessing.
I don’t feel blessed when my five-year-old rubs my back every day as I throw up every speck of food I ingest.
But at least I have food…. blessed.
I don’t feel blessed that I can no longer provide for myself financially because even getting dressed is a chore.
But at least I have people whose lives I can greatly burden with my illness…. blessing?
I don’t feel blessed when I hear my beautiful kids playing and I can’t drag my body out of bed to play with them.
But at least I have my hearing so I can listen…. blessing?
I’m often frustrated that I have to take 9-15 pills a day, as I throw up the sour taste of the meds.
I don’t feel blessed, but I’m told I am because I have access to health care.
I’m supposed to feel blessed when my angels fall asleep in the car, but I don’t because I’m 99% sure carrying them in the house will kill me.
All these blessings but everyday feels like hell.
I’m alive. I’m breathing. But I can’t touch any of the things that make me happy.
All these blessings and all I can think is that I’d trade all these blessings in for one last day.
Give them all up, just for one last day that I can feel normal.
That I wake up and I don’t want to scoop out my eye balls and pull out my brain just for a little relief.
That I wake up and feel energized. That I can cook my kids’ breakfast and smile and laugh.
That I live just one more day without this sickness.
I’ll trade all my blessings just for one day of no disease.
One day for my children to remember me laughing and hugging. Not vomiting. Not crying. Not laying on the floor asking them to quietly play around me because my head will explode.
I don’t want my blessings anymore.
They’re supposed to be some beautiful gift from God.
I can still see and hear all the things and people I love. But I cannot participate.
And somehow that’s a gift.
And I cannot be appreciative of them while they rob me of who I am.
I’m sick of this disease called a blessing.
It really is difficult facing the change between who you used to be, who you are, and who you still long to be. Far too often, our families don’t even realize how hurtful this is, because we hide the disappointment that we feel about ourselves. Especially as moms. We feel like we’re a burden on all those that we’re supposed to be able to care for. There is another side to this however, and that is that not only are our families learning empathy and love in a way that many in the world never learn, but as they see us transition with grace, if they end up in the same situation, they hopefully will have an easier time letting others help them too. Chiari families, keep your love on and try hard to stay together through it all!