How could my daughter who is 27 (mentally 2) save my life?
As I write this I try to remember who I was before Dac. I am sure I was a competent
Wife, Mother, Cook ect… but who was i beyond those roles? Before Marriage and babies
i was just a young woman without any real direction. I was not on any particular career
path. I actually thought becoming a wife and Mother was my ultimate goal. The idea of
falling in love and giving birth filled me with anticipation. When those dreams bore fruit
i felt like God himself had answered my prayers.
Then Dac came along and with her the diagnosis of Tuberous Sclerosis Complex. A
beautiful baby (normal at birth.) She would spiral down the rabbit hole and emerge a
young adult with a severe mental handicap, autism and Lennox Gastaut epilepsy 27
years later but this is not about Dac. This is about myself. When i discovered Dac would
always be dependent i made it my mission to give her the best life possible. I had to test
my mettle so to speak.
To determine whether i had the fortitude to take on the challenges of day-to-day life
caring for another human being. I was a mom already and a nurturer but i relished in
my other children’s sense of independence and identity. Would i find myself or even
Dac somehow lacking if she failed to perform even the most basic tasks? As i began my
journey i began to feel God’s eye was upon me. Was this a test of my character. Was God
testing me? I thought of God’s unconditional love for me and how many times i had
failed him yet he continues to love me. Warts and all.
I turned those thoughts of his unconditional love for me into positive action. How could i
not love my child in the same way? How could i best help my daughter who needed me
for all things? This was a discovery period. I learned i was braver than i ever thought i
could be. I was mousey in school.
Scared to speak up and always the nervous sort. In parenting a daughter with complex
medical problems my hands have grown steady and my voice has grown(at times to
octaves) when speaking on her behalf. I learned how to project confidence in my stride
as i push her in her wheelchair into places where everyone stares.
“We are here. Stare if you must. We know we are fabulous.” my mantra.
I have learned what God’s Grace truly means as i observe the even rise and fall of my
daughter’s chest as she falls asleep. She made it another day. Overcoming seizures,
heart failure, brain surgeries and many other problems.
I have become a researcher, a teacher, a public speaker, a defender, an advocate, more
confident, more humble, a listener, a confidant, a friend and all of these things have
been because of my relationship with Dac.
Maybe i had some of these qualities before. I like to think so but i do not think i
ever gave pause to acknowledge who they made me as a person.
I like the me i am now.
I see myself in a different light just as surely as my daughter has differences. These
differences do not make us less. They make us so much more.
As surely as if she tossed me a life perserver ring in the ocean of life,
SHE SAVED MY LIFE.
She helped me discover my inner workings(my soul.) and i feel God smiling.
Thank you Dac.