On Meeting Fears with Love

Learning to love the dragon
Learning to love the dragon

Light sleepily stretched in through the curtains tickling my nose; it was a nice contrast to the blare of my alarm.  Summer days were waning, though the heat gave no signs of giving in, and school days had arrived.

He burst into the room and I knew by the sight of his face that something was already amiss.  I asked sister to scoot back into her own bed; she lay limbs akimbo next to me.  She huffily popped up and went about her business like a volcano rumbling to life; yet, another symbol of things to come.

Brother settled in and buried himself in me.  Moments later out spilled every fear great and small that was packed into his tiny body; it escaped like a torrent through his mouth and flooded the room in a thick heavy anxiety-ridden smoke that choked and colored the sweet morning light in frightful shadows.  His head was heavy on my chest; it rose and fell with my breaths and his fears weighing as heavily as his precious crown.  I wished this had at least waited until coffee; life never waits.  As his mother this was my job and as much as I fear everyday that I am not enough I had to steel myself for him, coffee or not, and surround him in love.

Through the smokey fears I focused on the clear blue of his eyes, slowed my breath, and settled him–co-regulation in fancy terms.  I remembered not all battles are won by overpowering, battling and beating the enemy into submission; and I helped him chase the fire breathing dragon of fear creating all the smoke by asking question after question–“and if that happens, then?”–until we landed at his ultimate fear.  And then we surrounded that dragon with love.  Kay Redfield Jamison wrote, “The Chinese believe that before you can conquer a beast you first must make it beautiful;” in a way that is what we did.  Slowly he rose and we moved along.

A wise woman once told me, “mixed seems to be life’s favorite mode.”  Nothing is more true in the life of the rare and extraordinary.  The diagnoses both my children carry bring with them simultaneous tragic and burdensome hardships as well as tremendous, unique, and phenomenal gifts.  Life is in the “both/and;” it is a beautifully messy mix of light and dark, yin and yang, joy and sorrow, comfort and pain. As the dragon spreads his wings readying himself to spew self-doubt, fear, and shame to erode the tiny six year old warrior wrapped around me, sidled right along side are his gifts of intense sensitivity, deep and expansive thinking, a verbal capacity to rival someone in their double digits, and infinite kindness ready to meet it.

My job as his mother is not to slay the dragon for him–it is his battle; likewise, it is not to erase the cruelty of the dragon–the dragon is part of him. My job as his mother is to hold the both-ness of it all for his young mind; it is to breathe with him through it and share my calm with him, share my strengths, my love, and help him learn to balance the intensity of it all.  My biggest job is to be a mirror for him and shine back his exceptional strengths–to highlight them so that he may learn to depend on those strengths and himself in the future.  Both are true for him.

One of the hardest parts of mothering the rare and extraordinary is learning that one can not do it all, one can not “take it away,” “fix it,” one can not schedule enough therapies in the day to take the hard parts of life away, and that one cannot be everything that one’s child needs because one’s child’s needs are so vast–so expansive–and specialized that one must rely on others to help give one’s child what they need to thrive.  Mothering the rare and extraordinary is also about remembering in all of this that one’s child and one’s self as a mother is perfectly and wonderfully who they are meant to be–scars and all.  It is the “mixed mode of life”–it is the “both/and.”

My love is fierce and it is powerful.  My love is a hurricane of gale force wind-reckoning and a delicate breeze caressing the cheek of a child; it is both terrifying and wonderful.  I am both.  My mothering is both.  It is all in the balance.

Part of mothering is also learning that one’s children mirror back one’s self as they learn and grow.  I am mothering them well when I claim myself in my entirety–when I make my beasts beautiful, when I stand tall in the both-ness, when I claim space, when I shine a light on the parts of me that live in the shadows and proudly proclaim them as mine in my wholeness.  That is more powerful than any additional therapy I could cram into our already bursting schedule.

We are all a simultaneous mix of vulnerabilities and strengths.  For the rare and extraordinary the volume is raised until deafening. Everyone deserves to have their vulnerabilities met with love and their strengths mirrored back to them.  Claim your space.  Love your dragon.  The greatest power comes from loving that which seems most unlovable.

On Fear

On Fear
Some weeds are beautiful

The grass was long and uneven; weeds grew thick and straggly in the landscaping.  The sight got under my skin like the tiny bits of hot sand from the driveway that worked their way in when I decided not to wear shoes to run and grab the mail.  The asphalt burned underfoot; I concentrated on its heat to distract me from the messy exterior, but more so to distract me from the intensity swirling within.

I wanted to tear at the plants, ripping them away until our house looked manicured again.  I wanted to return inside to a home that was orderly and neat.  There was a rising scream that filled my chest like the steam expanding in an over-full pressure cooker heated too vigorously, but it never escaped.  

Our life is unseemly and wild like the weeds that grew in fits and spurts crowding out the manicured beauty of the landscaping.  It is hot and bothersome like the asphalt with little sand rock pebbles that pushed and singed.  But none of that exterior change would change anything.  In the end our fears are generally not about that which is without but that which is within.  

I fear I am not enough to parent the extraordinary and tame the wild.

***

They are within me and with out me; I grew their tiny bodies inside of mine where they shed cells that will forever circulate within me.  Our relationship is soft and silky yet impossibly strong like an invisible cord that tethers us to each other.  I’ve relied on this bond, read the small telegraphing movements of the cord, since before they drew their first breaths.  The bond is strong and primal, as old as the mother-child relationship itself.  I trust our fettered souls.  They have changed me at a fundamental level.

Yet, I do not trust myself; that I am enough, that I can do enough, that I love enough, that I see enough, that I have fought enough, that I have done enough, that I will be able to save her.  That I will be able to save her.  The rising scream that filled my chest was born the day I was first introduced to her immense need—the words Tuberous Sclerosis Complex.  

When fear looms as large as the weeds ready to overtake my hedge, I must remember, that my tether is to my children and not the devastating and incurable disease that has ravaged our girl.  There is no way for one person to be enough in the face of all of that.  But, there is one thing that is enough in this world and that is love.  It is that which wove the cord between us.  If only I breathe and approach it all with love the fear will lessen; and someday I will feel safe enough to release the sobbing scream that keeps me chained to the fear.