|"Mama...this girl's hungry!"|
"There are times when the entire arrangement of our existence is disrupted and we long then for just one ordinary day - seeing our ordinary life as greatly desirable, even wonderful, in the light of the terrible disruption that has taken place. Difficulty opens our eyes to pleasures we had taken for granted."
|Courtney has much to say these days...|
Hello Dear Friends,
I am so sorry I haven't been here this last week. I didn't mean to worry anyone. Life has been quite full with lots of doctor's visits, blood draws, an MRI and a new daily routine for our girl.
Miss Courtney has been doing well this past week. She is only having one major seizure event a day along with many small petite-mals which is a great improvement. We have only had to intervene twice with her new Ativan protocol that helps stop the cluster seizures which are the same type of seizures that put her in the hospital over Easter. She has handled the increased med levels well. Her appetite is returning and she is slowly re-gaining some of the weight she lost in the hospital.
Life looks a little different these days.
Courtney must be monitored during her waking hours in case she has a silent seizure. This means that someone is with her at all times. We also have to monitor everything she eats and everything that comes out, (if you know what I mean).
Basically our home has become a little mini pediatric hospital unit. No, there is no nurse just Mama, Daddy and her big brother as well as a few family members who come and sit with her so I can run errands.
It's a different way of living for sure BUT the grace that comes...oh the grace...
|Just chillin with Mama...|
“...there is no such thing as a charmed life, not for any of us, no matter where we live or how mindfully we attend to the tasks at hand. But there are charmed moments, all the time, in every life and in every day, if we are only awake enough to experience them when they come and wise enough to appreciate them.”
― Katrina Kenison, The Gift of an Ordinary Day: A Mother's Memoir
Grace flows freely these days and I am amazed at how God provides for every situation.
I will have a particularly difficult afternoon with Court seizing, medical bills in the mail, calls from the insurance company, my husband will have to stay late at work thereby throwing off the schedule and I begin feeling desperately isolated and alone in this whole situation.
Then grace flows...I will get a phone call, a letter or an email from one of you beautiful people and before you know it I am smiling and laughing and appreciating how blessed I truly am.
My daughter is still with me. She is still laughing and smiling and snuggling.
This new daily pace is not easy.
There are details upon details upon details that must be attended to.
I have to watch my daughter suffer through seizure after seizure knowing there is not a damn thing I can do to stop it.
There is the worry that comes with making those final decisions. I NEVER once thought I would have to sit down with my husband and my pastor and figure out if it's time for a DNR for my daughter.
These are devastatingly difficult decisions that take time and many, many prayers to make sure we are doing everything we can for her. We want her her daily life as painless and seizure free as possible.
Yet, here we are facing those types of decisions.
It is hard. It is sad.
Then I look at her in her pink sweater and bare feet dangling form her purple chair, her toes curling and her legs crossed, happy and singing and I smile at the incredible blessing she is to me and those who love her.
She is still teaching us every single day what true reliance on God looks and feels like.
I cannot do this on my own. I am just as human as anyone else. Just as flawed and sinful.
I rely on my Lord and Savior to pick me up and carry me when I am mired down in grief of the life I thought I would have with my daughter topped with the overwhelming responsibility that weighs on my heart every moment for my girl and her well being.
God's gift to me is an ordinary day.
A day when she is smiling and laughing.
A day when Miss Courtney and I go for a walk and she sings with the birds.
A day when she eats everything and her constant constipation is not a issue.
A day when she giggles as I read "kerplink, kerplank, kerplunk" in Blueberries for Sal one more time.
A day when she snuggles with her Papa on the sofa as he sings another Garth Brooks song to his favorite fan.
A day when grace flows...and we see that God is good...ALL the time...
"Enjoy the little things, for one day you may look back and realize they were the big things."
– Robert Brault
Labels: Courtney's World