In October 2004, I held in my hands a very real change to my life, a white stick with two pink lines. It was the first of many things at the start of Ephraim in my life that I would touch with my hands with wonder in me.
Papers that would list the measurements.
The numbers that indicated something might not be okay.
The arms of a chair, waiting.
His tiny body and an oxygen tube that first day, for a moment, before they brought him away to another hospital. May 14, 2005.
A bottle of milk I had pumped to send to him, while I could not hold him in my arms and nurse him.
His tiny hands when he was brought back to me.
A baptismal candle.
A toy, waiting for him to respond. He didn’t respond.
His ever twisting and spinning wrists.
His precious head against me, each night, as he struggled with sleep. He still struggles with sleep.
In the months and years to come, the hope of believing.
And when the worries of a new mom became the reality, the pen to sign the documents to begin the parade of people, months before he could walk.
The evaluations – physical therapy, occupational therapy, special education, speech therapy.
The Benadryl when another allergy was discovered.
His body as he awoke, a toddler, from sedation; his heart rate settling quickly when his eyes would meet mine.
The phone, as pervasive brain damage was said like something distant.
X-rays and Mri’s.
My forehead in 2008, as I stood in a hospital room dimly lit, swaying to the music of beeps on a machine, Ephraim’s moans, his new baby sister’s sleeping gurgles and my mom’s deep breathing on a hospital couch in the corner, each spike discharge dancing on the screen.
Medicines. An Epi-pen.
Rubbing my eyes from the reading after the diagnosis of Ehlers-Danlos Syndrome.
My courage when I stopped the tests without a definitive answer because it would not change the course of his life, and I did not want him to have to continue with poking and prodding just for details.
His backpack before he started daily preschool for special needs. His pillow as I awaited his time to come home that first day.
Lists of foods and strategies and charts and graphs.
His nebulizer mask against his face as he drifts to sleep, the asthma soothed, the vomiting stopped.
Tissues to wipe his tears as he has grown more aware that he has many challenges.
His fingers to keep him from digging at his skin.
Clean clothes on the way to the elementary school nurse’s office, another accident or difficulty with cleaning himself well. Another chin to lift up and say, “it’s okay”.
More than all of that,
I have embraced a child who radiates love and warmth to those around him.
I have pushed out on boundaries with him and reached up in prayer.
I have held his little sister and watched him hover over her with complete conviction of protection.
His confusion as he became the man of the house.
His arm against mine, as I looked out the window, “Sometimes sad comes, Mommy, but it will go away.”
I have held his laughter to me in dark nights.
I have held the hope that is in his sweetness, in the way people are touched by him.
“Rub my back, Mommy?” he will still ask, and I do.
In the last month, I held his hand for a 5k and his shoulder for his First Communion.
I held his proud smile.
May 14, 2014.
9 years of hope and grace and mercy and days where I wished I had much, much, much more patience, more insight and acceptance.
9 years of stunning speed, of my son becoming more himself and more like me at the same time.
9 years of pushing aside expectations and reservations.
How I wish I had lived more in the moment so many times.
I say this all, in transparency, because it is what it is to be me and be the mommy of Ephraim.
I have not been an image of flowing grace and composure in our house.
I have felt and touched with sadness and frustration and disappointment and excitement and pure love.
I have been angry when I shouldn’t have been and when I should have been.
Ephraim has done irritating things because of his delay and irritating things because he is a kid and sometimes that is what they do. (Yes, I have been irritated and shown it.)
I have yelled at a wearied child. I have wept. I have sang.
I have laughed…the full belly laugh of fun.
I have acted impulsively and regretted…and regretted.
I have cheered.
I have made many, many mistakes. I will make many more.
I am learning. We are learning.
Many face so very much more, and without the network of love and support we have. My prayers to them all.
May the deep sadness that has been upon Ephraim be lifted soon, that he may more fully be able to feel joy in the goodness he brings to the world around him.
May I find the peace to make choices that truly bring him the best chance at health and happiness, whatever the course he chooses and is able to take.
Thank you God for seeing in me the ability to raise such a remarkable boy.