Key to Soothing Pain

What is the key to soothing pain?  I keep pondering this question as my sister's future keeps teeter-tottering in the ICU at a hospital in Florida.  Since you're here with us on our journey, I wanted to share some heartache that my family is enduring. When life seems unfair and you fear the unknown, how do you ease the torment and the torture in your soul?  I decided it was too painful to stay quiet.

My sweet, beautiful, strong sister, Jess, who has touched so many lives, suffered a major stroke on Friday, January 23rd.  She has been in critical condition in the ICU since then.  She had not been well (e.g. pneumonia), but still this was a major shock.  It is bizarre and baffling the doctors as to what could cause this as her transesophogeal echocardiogram results didn't show any valvular or atrial abnormalities of her heart.  Her latest MRI does show multiple occlusions (aka blockages). The initial hypothesis was that is was possible there was a renal cortical infarct.  This in combination with the middle cerebral artery stroke raises the question of an embolic source. Still each day some new development occurs.  She cannot swallow or move her tongue.  Both sides of her body are paralyzed. She cannot sit up.  She cannot communicate. She's now been switched to stable in ICU and is breathing on a nasal cannula with 40% oxygen.

Still, nothing can stop the worry.  I am losing courage.  When you are bordering on the edge of a difficult decision where there is no good answer, how do you gather all the pieces?  I have never felt so pulled in opposing directions in my skin.  My heart aches for my parents; for the grief and pain that has cracked them open.  I know what it is like to fight for your baby, this creature who's existence matters so deeply.  It's not ever easy, but particularly when you are in the thick of it.  When your cortisol levels and adrenaline are maxed out and you're sleep deprived and sad.  At what point are we fulfilling our own wishes, but just prolonging the inevitable mourning, perhaps at the cost of her suffering? It's physically and emotionally painful for everyone involved, including Jessie.

So Palliative Care, Hospice, Rehab Institution or this tender shaky place- show us the face of compassion- and what and whom we can work with.  We are at the lowest part of ourselves...the underbelly of the Earth.  These tears are the most salty & the most intense.

I sit in pain and nausea when my sister will have no quality of life- when she is prisoner in a body that will not sit or swallow or walk or talk or eat.  It is unfair to communicate without words or hands to speak sign language.  It is cruel.  What must it be like to helplessly wait for others to help her?  How do you pick up the pieces of your heart?  How do you know what is the right thing to do when all we can hope for is something miraculous?  I know deeply that just as the bizarre weather we had this morning...as we floated between periods of sunshine and blizzard-like snow...life is bizarre and cruel and hard and joyous and bright with light.

I don't believe miracles exist but I know how "hope itself is like a star- not to be seen in the sunshine of prosperity, and only to be discovered in the night of adversity {Charles Spurgeon}." My thoughts let me down though and I go to dark places where I wish things were easier and that they had not revived her.  I have felt a tremendous weight and guilt for having had these thoughts.  I do not want her to suffer though.  She deserves so much better than this.  I want only for her to be comfortable and at peace.  I wish it could be like it was before the stroke.  I wish the transition for Jessie could be fast.

I feel so lost. Tears and loss and grieving.  Jessie, you are oceans away right now yet right beside us, but you're surrounded by love. We love you so, so much.  Peace & love & healing.  I'm gonna go drink a glass of wine now.  It's 5 o'clock somewhere.

The Art & Science of Building Resilience

To navigate the complex world of special-needs (or super-powers) parenting, we need to be resilient- to learn, adapt and grow even stronger given whatever life's circumstances come our way.  An integral part of strengthening resilience is sharing our story, our feedback, our imperfections in a connected, grounded way.

We have a choice.  We get to choose. We can cultivate calm, non-reactive presence and sit with whatever is. This practice is like mountain with no top; ever-expanding. There is no top.  I am constantly learning by trial and error.

Sit with it.  Sit with the idea that Lewis has been eating (by mouth) for the last 3.5 years. Is it still disorganized? Hell to the yes!  But his whole life revolves around food now.  He is completely desensitized from the trauma of the intrusive medical intervention he received in the hospital after he was born lifeless. Considering he has only truly been eating and drinking for the last 3.5 years he is making continual progress. He loves food!

Fast forward to the last two months at school.  As much as we love school, it's a lot of new people in our lives who sometimes don't really understand us. Even though we have a team who supports LJ, it somehow can feel lonely.  Quite possibly my fear, anxiety and defensiveness enter into the mix.  But here's the thing, his team is nervous about feeding him.  After the long road we've been on to develop Lew's eating skills, I do not want to entertain the notion of a setback.  So I am aware that my reaction is completely founded.

My impression is that the school SLP (speech therapist) and lead teacher don't really want to feed him/feel comfortable feeding him.  They've been pressing us to have a dysphagia team observe Lewbug eating at lunch time so that they can offer an action plan.  Josh and I finally consented under the impression it would not limit LJ's food intake but rather give constructive feedback about increasing his efficiency and helping those people that are feeding him. Since there isn't really a lot one can recommend, their knee-jerk-go-to solution is to suggest another swallow study.

Here's my strong conviction on the swallow study.  It's not gonna change what we are currently doing.  It might confirm what we already know...that there is a delay with Lewis' swallow.  But if you don't rush him, give him plenty of time to swallow, and make sure he's cleared his throat before receiving his next bite, he's eating.  He's not going to stop eating.  When he drinks water from his camel bak with bite valve, he has a compensatory body positioning.  He's weak on his right side (he has right-side-hemi-paresis).  The result: Lewis has figured out he needs to gain momentum to swing the bottle upward slightly using only his left hand, and tilt his head slightly back to get the water to flow.  The school team is concerned that all of the above makes him high risk for aspiration.

On January 5th, the schools dysphagia team came and observed a very chaotic "lunch party" with a bunch of LJ's classmates.  They were observing LJ.  There hadn't been any consult with Josh and I prior to the "lunch party".  Questions about LJ's physical abilities weren't addressed until their very first meeting with LJ.  Information about our past attempts at the month-long boot camp in NJ at St Joseph's hadn't been explained.  Nor had the team been apprised of our tube weaning with Dr. Markus Wilken. And of course our on-going efforts at private speech/feeding therapy at home also weren't previously brought up.  It was very frustrating for me to sit and watch them analyze my courageous, beautiful, vulnerable, happy, complicated, unconventional eating boy.  Twenty minutes in, the SLP from the DT asked if we had "ever considered doing another swallow study because he's really got an open airway and that's cause for concern".

My gut reaction was this: "No.  He's already passed the swallow study in 2010.  He doesn't aspirate.  We're not concerned.  His doctors are not concerned.  He hasn't choked, or gotten any respiratory infections.  He's never had pneumonia except once in the NICU.  He's not even followed by a pulmonologist anymore."

Sure, somedays I feel like all I want to do is hide under a rock for a few days.  When I feel depleted of energy for this battle- recognizing this.  Having this awareness that I feel spent, overwhelmed and sometimes furious informs my decision that I need to take all-too precious time to myself to nurture and recharge. And then I regroup my thoughts.  It comes to this- anxiety and frustration is happening but ordeal is a choice.  The choice is how I get to hold the experience.  My choice right now is to thank them for watching my little boy, making their recommendations on their little report and moving along.  Nothing's changed.  There's no new medical crisis or diagnosis over his eating. He's adapted to life's circumstances. The only thing that's different is a school with new people involved with feeding LJ at lunch time. We'll get through this.  It just takes time.  The choice is mine.