joey bear

Dear son,

It’s early morning. The smell of coffee is filling the house. Pale, gray morning light is peeking thru the blinds – enough light to see but barley enough to wake up and greet another day. It is as if the sun is too tired to shine through the dreary January sky. It’s quiet, well almost quiet, all you can hear is the rhythmic humming of the oxygen concentrator – an annoying, yet comforting sound.

Your soft little hand is wrapped around my finger and I’m trying to take it all in. It’s a lot to take in, son. Who would have thought a young little boy would touch so many hearts? Who would have thought a young little boy, without uttering a single word, would teach us so much about faith, endurance, pain and joy. Who would have thought a young little boy would help us discover the masks we wear to hide our shame and insecurity in this world? Who would have thought a young little boy would help us see the difference between pity and compassion, deception and truth. Who would have thought a young little boy could grow our hearts so uncomfortably big and who would have thought that young little boy would be you, our son.

A dear friend asked if you’re running on love the other day. I wonder if she’s right. I hope she’s right. You must know how loved you are. I love you with my entire heart, with every cell in my body. Always have and always will.

Love fights, hopes and it believes. You know I’d fight thru season after season of missed courtesy calls from the pharmacy reminding us that your order is ready for pick up; season after season of beeping feeding pumps and noisy equipment; season after season of cutting holes in onesies and t-shirts; season after season of formula stained blankets and stuffed animals; season after season of the never-ending washing and rinsing of syringes; season after season of doctors, nurses and therapists.

But love also sees, feels and it hears. And something is telling me – maybe it’s the tired look in your eyes or maybe it’s the feeling deep down in my soul – that you need me to love and fight differently. That you need me to fight with you and not so much for you.

You are so brave and so strong, son. I know because I see you fight, I see you fight hard every day. I see the tear rolling down your cheek after I suction you. I see the way you try to raise your hand in discomfort when I stretch your tight little legs. I see the look in your eyes after you’ve come out of a seizure. I see the grimace on your face when I turn your stiff little body at night. I see you fight and how you’re having to fight harder lately.

You are so brave and so strong, son. I know because I can feel you fight hard every day. I feel the rattling in your chest when I hold you tight at night. I feel the way this horrible disease has eaten away at your muscles and put a curve in your spine. I feel your cold little feet. I feel the dent in my shoulder from the nasal cannula that delivers oxygen to your frail little body. I feel the clonus – first your ankles, then your legs and now your entire body – when I go to reposition you. I feel you fight, son and how you’re having to fight harder lately.

You are so brave and so strong, son. I know because I can hear you fight hard every day. I hear the secretions pooling in the back of your throat. I hear the labored breathing. I hear the sigh you let out after I put you to bed at night. I hear you fight, son and how you’re having to fight harder lately.

Oh how I wish I could take your place. That I could suffer for you instead of with you.

I believe there comes a time in every mother’s life to release her son and to let him go. I always pictured it as sending you off to college or releasing you to another woman on your wedding day. However, that word carries a whole new meaning now.

I will never stop fighting with you or cheering you on, son, but I feel the time has come for me to release you. Release you from expectations – expectations I had on your life and what I wanted it to look like; release you from the fear I carry in my chest – fear of what you’re having to go through and how it will end; release you from doubt – doubt in God’s goodness and sovereign hand on your life; release you from the pain that overwhelms my soul; release you from disappointment – disappointment in what we got and disappointment in everything we never will get; release you from sorrow; release you from anger; release you from false responsibility.

You are free, dear one. You are free to live, free to fight and free to die. I believe you will take our hearts with you on the day you leave, but I know, some how, some way that it will be OK. You need to know that we will be OK, son.

May God bless your life and your homecoming; your strength, courage, and your resilience and may he bless a potential miracle.

Love always,

Mom