My husband and I were told by one of her first doctor’s that our daughter’s condition was “grave”.
She was only 6 months old.
When she was 13 months old, we were told she would not live passed the age of 5.
For the next few years, our girlie would have hundreds of seizures a day, where we expected and watched for death, believing it was imminent.
From those early days, we began a daily journey.
Daily living in expectation of death.
For many, this causes a form of PTSD, but where you live with the trauma daily, it isn’t “post” because it is actual daily lived in trauma. It is trauma of waiting for death, every single day. A seizure starts and my heart feels like it stops, wondering is this the one, is this the last one?
We were walking a daily funeral.
I began, as a mom, to watch others diagnosed with the same disease about the same time as girlie, to pass away and families have funerals grieving their loved one’s short life and celebrating their spirits joining Jesus in heaven.
I began as a mom, to be in constant state of readiness, looking for songs we might play, and other details, of the “when”, not the “if”, of death.
The grieving, as I later learned, became more than cyclical, it was constant.
But something else occurred as well, I began a daily death of myself and my desires as well. My desires and dreams for girlie’s future had to die. My desires about my home life had to die. My desires for myself had to die. My desires for my boys lives had to die.
“For me to live is Christ, but to die is gain” Phil 1:21
My life no longer became my own, as it was in total control of someone else, someone much higher than me. I became at the mercy of doctor’s schedules, therapists schedules and requests, school systems desires.
Also, it became a daily waiting on God, because I knew He is in control of all of those systems.
God is in control of it all.
He moves in doctors, he moves in systems, he moves in programs.
My dying allows God to take control.
I am thankful for the daily funeral. I am thankful God has taught me to let go of my own desires and wishes.
But it is still a daily battle.
It is still a daily letting go.
Daily dying to self.
Psalm 23:4 “