I live in Chandler, Arizona and am mom to four children. My third child, Jack, was born with a rare form of congenital muscular dystrophy. Because of his disease, Jack suffered from severe muscular weakness that caused him to need a tracheostomy and the assistance of a ventilator to help him breathe. Jack was unable to walk or talk, he was fed through a feeding tube and he was dependent on others in every aspect of his life. Despite being born with a disease that stole so much from him, Jack radiated love every day of his life. He had eyes that smiled and stole your heart away. On January 5, 2014, Jack passed away at the age of 15 from complications related to his disease.
During Jack’s lifetime, I came to know other parents of medically fragile children like Jack. Through my own experiences, I understood the tremendous stresses placed on parents caring for children with complex medical needs. Recognizing the need for parents to take “time out” from the relentless demands of caring for their children, I founded the Willow Tree Foundation — an organization that funds respite activities for parents of medically fragile children. In Jack’s honor, I continue to do “our” work through the Foundation, sustained by his indomitable spirit and guided by his light.
How is it possible that five years have passed since I held you in my arms as your heart sounded its final beat? How is it possible that my heart has continued to beat the last 1,825 days? Time feels so different since you died. Yes, years come and go and can be counted, but time feels oddly stationary. As if it’s incomprehensible that life could continue on without you. When I think back to something that happened in the past and want to assign “years since”, I have to remind myself to add the number of years since January 5, 2014 to my starting point. That first year after you died, I was admittedly hyper-focused on the passage of time. Every day, week and month wasn’t solely a measure of how long you’d been gone, but a measure of another day, week and month that I survived without you. And survived I have.
Someone recently shared information with me about an online support group for parents of children with special needs who have died. While I appreciated that she reached out to me, my response was “I’m doing okay.” Admitting that I’m doing okay since you died carries an element of risk. I risk that people will interpret my healing to mean that I’m no longer grieving, that I have “moved on”, that they don’t need to ask how I’m doing or say your name. I will always grieve your absence, Jack. I miss you so much I ache. I will always appreciate when people ask me how I’m doing, and oh, how I love hearing your name. I will forever wear the blanket of grief. Some days it weighs heavier than others.
But my sweet boy, I am doing okay. I’m doing okay because I know without a doubt that you are okay. Your last heartbeat on earth was immediately followed by your first soulbeat in heaven. Your spirit soared and lives on. I know this. On those days when I need to hear from you, I simply ask and you answer. I hear you in the clouds, on the trail, in the words of songs, in every perfectly timed text message, email and card I receive. Rumi reminds us that “There is a voice that doesn’t use words. Listen.” That is as much true now as it was during your lifetime. You taught me to listen to the voice in your eyes. I use what you taught me to listen for you now. Thank you for teaching me to listen to your wordless voice. It is a gift that will sustain me for the rest of my earthly life.
Over the last five years, I’ve slowly converted your room into my space. The room that was always filled with people, commotion, joy and enormous love has become a quiet, peaceful place. Love still permeates the air. When I sit on the couch where your bed once was, I envision the room through your eyes. I smile. I cry. I feel your presence. While much of your room has changed, some things remain unchanged. The last videos you watched still sit on top of the DVD player. The monitor sits on the floor, still plugged in.
I’ve given away or tossed most of your equipment and supplies. But there are some things that remain. Your wheelchair sits parked in your shower along with your Ryan House bin that holds everything we left Ryan House with when we left without you. Your bedside dresser holds fifteen years worth of your glasses. I feel no compulsion to get rid of these things. They are sacred to me. The pants you were wearing when you died are carefully folded in your dresser drawer, still holding the faintest scent of you. On those days when I ache to hold you, I pull the pants out of the drawer, hold them close to my face and draw in your scent. And I sob.
One of the greatest gifts you left me with is my circle of friends. They are why I can keep on keeping on. The people who supported us throughout your life are still here, supporting me. My sorority sisters, your nurses, your doctors and so many others who cared for us during your lifetime. Even though I’m no longer in the trenches caring for you, I haven’t been abandoned. It’s so hard to be on the outside looking in. But our people continue to embrace me. Who would have guessed that I’d hike the Grand Canyon with two of your nurses and other moms I met because they have kids like you. Who would have guessed that I’d find myself in your neurologist’s kitchen eating breakfast that she made me! Or that I’d be writing a book with another one of your doctors. Even in your absence, you continue widen my circle of friends as I meet and walk with other parents whose children have died. You touched people, Jack, and because of your incredible reach, I am surviving.
As I try to wrap up this note of meandering thoughts, I recognize that I’m really writing this to myself. I need to hear these words; you do not. Perhaps that’s the hardest part about this journey — knowing that you no longer need me. You live on without your mom. That’s a hard one. Equally as hard is that I must live on without you. A few months ago, I read these words, and they really spoke to me: “Nobody can will their heart to beat even once. Every heartbeat is a gift from God and means he’s not done with you yet.”
Five years ago, my beautiful son, you finished your work here on earth, and your heart stopped beating. You have been released to your heavenly Home. My heart still beats. I have more work to do. You changed me, Jack. Who I am and all I do is because you lived. My work is really “our” work. You light my way. Sustained by your indomitable spirit, guided by your light and with an eye always towards the day I get to be with you again, I will continue to grieve, I will continue to say your name, I will continue to do our work, and I will continue to push Onward.
And I will be okay.
I love you. I miss you. I am thankful for the fifteen years I had you.