Our Life, With No Apologies
No one person knows my life, the extent of what I have witnessed
in sterile hospital rooms while my daughters beautiful minds seized for what seemed to be an eternity.
Nor do they know the joy and pride in my heart when my nonverbal child signs “I love you” to me and I can feel the depth of her love through her tight squeezes and occasional love pinches.
I have been battered with sleepless nights of chaos, insulin, low alert alarms, pure worry and panic of a life altering seizure or low coma.
Only have I felt the beauty of my child’s smile after months of her tears and hopelessness of the ironic trifecta of conditions that mold her strength, perseverance and empathy for others.
They haven’t witnessed the moment I could see the sparkle of happiness in her pristine chocolate eyes after being vacant for far too long. No one could feel the hope and peace that enshrouded my entire being.
That moment my other daughters lived a nightmare while they witnessed their oldest sister unconscious and being taken away on a stretcher with flashing lights and EMS blue uniformed men shuffling to save her.
No other person has felt my pride in that same moment because their immediate calm helped their mom hold it together when we called 911 and waited for that emergency response to arrive.
I celebrate the exact second my profoundly deaf child was able to hear my voice for the first time ever and the slight giggle that immediately followed.
And her eyes opened wide with surprise.
Yet also when my life seemed to shatter when the audiologist confirmed my greatest fear at that moment in my world, “She is profoundly DEAF. Your daughter can’t hear an atomic bomb going off.”
No one felt my silent screams of raising a child who couldn’t hear my voice.
I was the only one who felt the self-hatred anger of self blame. I still hear those Demons whispering, “It’s your fault.”
“It’s your fault she is deaf.
Your fault your youngest child seizes up to 40 times a day without medication.
You are the reason her speech regressed to deafening silence, the reason she can’t be left without direct supervision or absolutely can’t be around open water without a tight grip on her hand.”
Some days I can’t shake these demons. But most days I can.
I feel the love of my God. I feel him through others help and their outstretched hands.
It is in 1:00 a.m. friends, who come to my aid and patiently and calmly change my daughters dexcom and prick her delicate finger to check her blood sugar, only because that friend is the only one my daughter wants at that moment.
I see God in my Autistic child’s therapists tears when she vows to use all of her God Given talent to help my daughter communicate.
I hear him in my parents calm voices, in the thousands of hours they devote in helping me and my family.
I see him in other autistic children’s stimming ,in little deaf children’s tiny hands signing as eloquent as a song.
I feel him when a Type I diabetic child pricks his tiny finger without flinching.
I hear him in the silent relief of parents in the moment their child stops seizing.
If this writing seems a jumbled mess of words and emotions, that is because this is my life…with no apologies.
You see, you don’t know my life.
I don’t know yours.
Some may have more burdens than mine, some less.
I know one thing, it is not our duty to question others about how they can do it; because they can’t alone.
It is our duty to lend a hand to help another human however we can, whether it be a hand to hold or a prayer.
God has given us many burdens, no one knows the true extent of these, but we can be present and support.
It is our duty to realize the good that comes from these burdens.
It is our duty to give people grace.
Be kind, for we can’t know the true extent of the crosses they carry. The crosses that only they can understand.
Written by, Erin Maser
I am a mother of four beautiful girls ages 13, 8, 7 and 4. My youngest just happens to be nonverbal autistic epileptic. I am a Title I Elementary teacher in Wyoming. You can follow our story on our blog at Keep room in your heart for the unimaginable.
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