On Drowning

Drowning is silent; there is no grand cinematic splash, flail, and scream.  True drowning is insidious and deadly. The once confident looking swimmer is suddenly gone with no yell for help and no sign of distress.

I am a fiery, powerhouse mother of two children with disabilities and I feel like I am drowning.  My drowning is as silent and insidious as the real thing. My drowning is slow and it looks well groomed and smells of perfume accompanied by bubble bath; it gets to school on time; volunteers for the PTA; then, arrives at home to face the mountain of responsibility and sinks below the surface into the dark depths.

Do not let my functionality fool you; I feel like I am drowning.

I look calm and cool above the surface while my legs frantically kick below to keep me afloat.  My legs are tired and cramped.  They have been kicking for years–since the day I sat cherry faced (from steroid shots) and smiling at my baby shower pretending to be carrying a healthy infant.  No one, save for a select few, knew the baby swimming around in my belly had a body riddled with tumors and would be born with the rare genetic disorder, Tuberous Sclerosis Complex (TSC).  I was drowning in grief, in fear, in appointments for myself and my baby; and, I was excited to meet my growing baby, surrounded by friends and family celebrating her.  A piece of me slipped below the watery depth that day.

My drowning is piecemeal.  It has happened bit by bit over the years.  I have lost pieces of myself to the crushing responsibility and lack of resources.

Today I tread tirelessly, a child in each arm, to keep us all above the surface.  I feel the tug of riptide–the school calls, the emergencies, the medical crises, the new diagnoses, the day to day battles, the behaviors, the therapies, the endless appointments. It threatens to pull us all under in totality and I tread on because I refuse to let this life claim my family. I am buoyed by my love for them–by our love for each other.

I am tired and I need help; and, I will continue to tread on. You may not know all that is happening below the surface. I look like I can do it all but one cannot tread water indefinitely without support. And this world is just not built to support families like mine–the multitude of need is far reaching. The cost thus far has been high. The truth is below the surface there are pieces of me slipping away bit by bit while I wait for someone, something to help.

Nevertheless there is a bothness to this world that is mysterious. I look the model of strength, calm, cool, collected togetherness while I feel like I am drowning. I am losing pieces of myself bit by bit while I gain new perspectives on this wide and wonderful world I would never be privy to without my beautifully complex children. The love, pride, and joy I hold for my family gives me great strength and requires strength from every fiber of my being. I may feel like I am drowning and I am kept afloat by the hope I hold for our future–no matter how small it may be at any given moment.

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On Extraordinary Siblings

On Extraordinary Siblings
Finding Hope Through Love

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.