A letter to my Bubbie

Laura Rosen Cohen has a teenaged son with a rare genetic disorder. This is a letter she wrote to her late grandmother, who was and remains a formative and towering figure in her life and who sadly passed away too soon.

By Laura Rosen Cohen

Hi Bubbie,

I started this letter to you a hundred times or more in my head, and each time, I started crying, so I had to stop, and try to focus on the positive until my breathing became more rhythmic, my limbs a little more heavy and relaxed, giving me a chance let my body and mind rest, and sleep away my worry for a blissful few hours while I have help at night.

When morning comes, and the sun returns to its rightful place on the new day’s horizon, my fears start creeping in again. I wake up, generally thankful and truly grateful for the new day and its blessings. But I confess, I look into the mirror and see a middle-aged woman looking back at me. That woman no longer has a special needs child, she has a special needs teenager, who will soon be her developmentally disabled adult child, a dependent adult different from other adult children—always.

We had our first “transition” meeting, and I guess that has been sort of a trigger. The road from disabled child, to teen to adult is a bumpy one and I have to admit how scared I am to travel upon it. I’m driving into unchartered territory, toward the time in my life, to a destination called No Empty Nest, and will stay there for as long as my husband and I are well and able. I wish you could have met him, and my kids.

Even though I know you’re with me all the time, watching over me, I wish I had you here to talk to, really talk to. I wish I could hear your voice, really hear it out loud, and not just in my head saying “Laura, you are going to be OK, you can do this.” I wish you would make me a cup of sweet, milky tea in those white tea cups with the pretty purple flowers on them, and your banana bread, and we could sit in your kitchen, and let me feel your soft hands, and you would be humming old songs, and giving me more bits of wisdom that would carry me through my fears now as they did even then.

I guess what I’m saying, Bubbie, is that I’m scared. I’m scared of finding adult services and programs and doctors. I’m worried about how independent he will be even though I know worrying will not win any more independence than what he is actually destined to achieve.

I’m concerned about making it as easy as possible for my other children to lead full and rich lives, with as much support as my husband and I can possibly generate to give them as much freedom and peace of mind as possible for when they start to navigate my son’s life on his behalf when we are no longer able.

I’m worried about him having a meaningful life. And I’m sometimes tired, sometimes I grow weary from the constant need to project strength, to lead by example, to express a general sense of optimism and gratitude for what I have to others even when my reserves become low themselves or in the moments when I find myself momentarily and regretfully bitter, or even sadly—resentful. Yes it happens. These moments are fleeting, but they do happen.

I wish I could sit back in your den and talk it out with you. If I close my eyes I can feel the fabric, and see the sun shining through the windows and hear a few notes on the organ, and hear you singing.

I know you know exactly what scares me before I go to sleep so I’ll be talking it out with you frequently, even if only in the peaceful no man’s land between consciousness and dreaming, when the line between your voice and mine converge into a dreamscape, as I try to retain and remember your sage advice and our conversations as dawn breaks and a new day begins.