When fog settles deep
With gloom it’s best companion
Forget not your light
When fog settles deep
With gloom it’s best companion
Forget not your light
It was as if my life began the moment she gasped her first breath and it was not; it was the moment my life began anew—my life as a mother. This new life was supposed to be my smooth paved roadway fresh and free from debris—the one I merged back onto after the bumpy detours and construction of the past. But, fate and the universe have plans of their own. Instead, as our family drew our first breaths of air together our caravan careened off-road and entered an equally bumpy, detour filled journey with no maps, no GPS, and no intention of ever returning to the well-traveled, smooth-paved roadway the typical travelers sojourn.
My tumultuous past is visibly mapped out in faint white juts that jaunt across the olive skin of my arms and traverse into deep sinewy canyons; they are detours that innocent little fingers have always known and lovingly traced as they soothed themselves to sleep. Disconnected from and ashamed of such a burdensome history and its physical manifestations, I hoped to leave it all behind when those innocent beings entered my world.
The canyons healed long before we drew those breaths together and the map of my past rarely crossed the junket of my mind until the hot rays of the summer sun shed the layers of concealing sleeve above and revealed the delineations below, and deepened the hue of the surrounding skin and divulged my Mediterranean descent.
Recently the topography was more present; my map was mentioned and questioned by those not as kind and innocent as my tribe. I felt thrown asunder. How many noticed and what did they think about it? Did they think it undermined my ability to navigate the rocky roads of our current journey? Because, I certainly started to fear that myself.
I began to have a deep desire to erase the pox-marked skin of my arms, to eradicate the troublesome nature of my past, and pretend that my life began somewhere on my more recent track; but, I could do that no more than I could miraculously heal my daughter’s rare disease, right our off-road travels, and soften our bumpy trail. Confidence eroded from under me like soil washed from a mud packed path under the stress of a traversing vehicle.
In the growing shadows of the late evening my son ran his fingers across the deep crevasse vertically demarcated in my inner elbow and my mind traced back into the shadows of my past. He lovingly soothed himself as he always had on “Mommy’s tickling spot,” and gently stroked as he let the bumps and bruises gained during the travels of his day melt away in my loving embrace. I held the juxtaposition of past and present. How very similar and very different the constant crisis, arduous and pain-filled days. In that moment, as our breathing slowed and synced I also held the resilience, the great love, and the courage.
I realized all the light to match the dark—the yin to the yang—that helped me survive the hard course of my past—all that I learned—prepared me for riding through the chaos of the present. I breathed with him bolstered by a new confidence. It mattered not the thoughts of others but the knowledge of my soul.
The factors of my resilience pulled me from the precipice and aided me along my way in the past, and, because, I exercised them, out of necessity, I know them intimately and impart them intuitively to my children. I emanate them as our breathing syncs and they trace the pathways of my love; they take from it all the deep devotion, boundless resilience, passion, advocacy, respect, and kindness they need along the way.
The medicine spilled down my fingers sticky-sweet and thick somehow reminding me of tar. It found its way onto every surface with long reaching tendrils and glued itself there. Dammit! I thought, I don’t want to be doing this, not again, not for the seemingly infinite time in her short life, because the sickly sweet antibiotic with its tar like tendrils stuck to me and weighed me down with complete and utter hopelessness.
My mind jogged back to picking up the medication and the scene we caused in the pharmacy drive thru. A simple sibling fight had escalated to screaming match until he yelled out in frustration, “I wish she was normal! I wish I had a normal sister!”
I was stunned into silence as the motion of the pharmacy tech’s hand slowed to a crawl in my mind’s eye on its way to hand me the necessary supply of medications for this round of battle. There is only so long one can stay shell shocked and survive, so I forced myself into forward momentum, turned around and addressed him with a, “We will talk when we get home,” signed the pad, and went on our way.
At home I got to the business of doling meds, as the hot anger churned acidly in my stomach and fear of not being enough to handle this all shook my hands and spilled the drip down my fingers. How does one address a sibling with the tar of hopelessness stuck to every fiber of one’s being with its accompanying stench of helplessness following one’s every move?
After dosing sister, I sidled up to him on the couch, “Bud, don’t I wish, every minute of every day things were different too? Your sister is normal. She is perfectly meant to be who she is; just as you are you. We all struggle with something and sometimes that is a big thing and sometimes that is a small thing; for her that struggle is a very, very big thing. I get mad too and wish she didn’t struggle like she does and it’s ok to wish that but it isn’t ok to say that to her. If you have those thoughts or feelings you say them to Daddy or me.”
I swallowed hard waiting for this impossible-to-understand topic to land in his six-year-old psyche. Hopelessness is pervasive and deep. It will stick to one’s insides. He has it stuck to him too. He is small and in a world impossibly unfair and even more improbable to understand. We have to make some room for him to share his burden even when we don’t like how it sounds.
The same burden that can make this mom feel weighed down and consumed with a panic that feels like it will never dislodge. My heart ached for him and broke with the weight of helplessness and hopelessness. I knew I had to work harder to illuminate the genuine love and hope for his sister and our family that I hold for him and all to see.
Because, I know right up beside that hopelessness and helplessness is a reservoir of strength, hope, and resilience. I find it in her smile, his hug, the way they both burst out laughing in the pharmacy drive-thru as I rolled down their window and told the pharmacist that I had two fighting beasts on display if she cared to view; it is in the juxtaposition.
Yes, I wish every day that I could remove her struggle, but her striving in the face of adversity is what gives me hope. I would not change either one of them. Not one bit. And that is where he can find hope. In his mother’s love. That will carry him through the struggles of having a sister with a life-altering rare genetic disorder.
I moved closer to the feelings of love, agency, and hope as I scuffed the hair on his head. He smiled ever so slightly through the sadness.
We’ll make it through.