Never Under-Estimate the Power of Hope

anything could happen & that everything would // Cheryl Strayed

Life has surely been sweet and strong lately. I'm finding a way to weave gratitude into everything.  For instance the stumbling, the correcting the course, the difficulty finding balance.  This time around, the wisdom of knowing the journey we've been on and the path of healing, courage, of beauty, of love we are on. They've helped me stretch my soul.

Cruising With Lew from Jenn S on Vimeo. Video shows our guy stretching his calf muscles 14 days post botox/heel cord procedure. He's still really weak in the shin muscles (from years of such tightness in his heel cord) so we've been trying to help him develop strength by the stretches and activities at home.  Lots and lots of PT with his fabulous therapist Ms. L!  It's still so hard for him but he is a persistent little guy.  He does not give up.  He gets up day in and day out and begins again (and again and again). Thank you so much for teaching me the most powerful form of resilience training.

and starting off the Memorial Weekend with Lew, the Bruiser....  He had an incident in his activity chair whereby Annie our dog knocked him down (his brakes weren't on cuz we were moving toward the house) and consequently he hit his forehead on the corner of the ramp wall.  Coupla stitches later and a CT scan to be sure there wasn't a concussion. It was a deep puncture...on his forehead. Suffice it to say we had a lot of nice cuddles the rest of the weekend.  On this day, I surrender my heart to possibility, to listening, to asking, to helping me, to hope.

Neighborhood Ride After the Rain

I'm proud of the boy Nate's becoming.

LJ is doing fine after his surgery last week.  His heel cord and hamstrings are getting some relief from the botox procedure and we're stretching him everyday.  His PT is going to see about a padding for his leg brace so it positions at his Achilles Tendon to decrease him from pistoning out. Other than a few tweaks here and there, we go in for a post-op appointment with his doctor in the beginning of June.

Both boys are doing a phenomenal job.

Hold Nothing Back, Bring It All On

beautiful moments throughout motherhood

“In the still heart,
that refuses nothing,
the world is twice-born-
two earths wheeling,
two heavens,
two egrets reaching
down into subtraction;
even the fish
for an instant doubled,
before it is gone.

I want the fish.
I want the losing it all
when it rains and I want
the returning transparence”

~Jane Hirshfield

The Greatest Show On Earth!

Lewis has mad skills.  Last night he removed his night brace and threw it to the floor in the wee early hours of the morning.  I've got to tell his OT what a great job he did with his fine motor skills! Still amazes me.  Learning. Growing. Knowing.

Here's a video from his recent OT session this week:


Trapeze Lewie! from Jenn S on Vimeo.

Anniversary (13 YEARS!)

The magic never ends.

I love squeezing the hand of my best friend & I still feel like a newlywed. Once a year we get to celebrate our milestones, beliefs and our family traditions.  Wishing you a very Happy Anniversary Josh!

Transitions

Well, reassuring to know that all the humdrum of life is waiting to start right up upon your return after a nice long trip to India!  Back to home life after Spring Break.  I can't help but feel that my boys are feeling not-so-mysteriously rebellious toward me after leaving them on the home front for two weeks.  I know change is all we'll ever do.  I am changed and they are changed.  I don't want them to change but that's the only constant.

{Nate doesn’t want to look at instagram.  Josh asked him why.

“The only thing I care about India is when Mom comes home…I’ll look at the pictures then.”}

(I really love this kid.)  My guys have made me whole.  I had to go away to discover that.  To truly understand that they needed me. Josh did beautifully and kept things in complete order.  He just wanted LJ to sleep thru the night - that would have made him a happy camper.

Albeit, I came home breathing easier.  I came home with a fresh pair of eyes.  I came home with a happy heart. I won't be documenting my every thought and feeling.  I simply want the story of India to unfold here for you. So you get a sense for how the images and memories are ingrained in my mind.

I tell myself to enjoy the journey instead of the destination. "Stay in the moment."

So I'm doing a bit of both and here's what I've been up to....sometimes imagining if moments would seem different if things had worked out differently then they did...At the shoulda, coulda, wouldas.  Anyway, North India_Udaipur, Jaipur, Agra and Delhi.

I practiced yoga outside and probably got malaria but don't worry, I diligently took my antimalarial medication!  I spent lots of time looking out the window or hotel grounds at monkeys, cows, camels and elephants (and I used to think nyc was exciting!).  I am happy that I was able to hold my mama tight when she was imagining her own shoulda, coulda, wouldas.  When one too many Simon & Garfunkel songs came on her playlist.  When we were healing together.

In the Embrace of Park City

Writing and sharing with you that my sister Jessie was discharged from the hospital and is home recovering from her stroke.  She is making slow progress and we are gathering the strength, heart thoughts and perspectives many of you sent along to help cheer her on during the next several months of the healing process.  Holding her and you all in my arms...in my heart. You make a difference.

Park City Shredders 2015 from Jenn S on Vimeo.

A few photos from life lately....in the embrace of Park City, Utah......

The National Ability Center, affectionally referred to as the NAC by Park City locals, makes us think how as a parent of a special needs kiddo, you can lament or you can spend your time reflecting on how it can make your life richer.  It's become an important part of keeping myself grounded.  

For many people with special powers, the NAC is their safe place....family members and individuals with different abilities alike, but mostly for the adaptive skier.  It is a powerful and awe-some experience to see firsthand the NAC's encouragement of a barrier-free activity for people of all ages and from all walks of life. We are so fortunate to have the opportunity to spend time as a family in the nurturing, supportive arms of the NAC.

Realizing that for this individual, it was his safe place....the NAC!

"A Good Day with Cousins"

Molly and Lewbug

"This Will Be Fun" (Getting the hang of Lean Right/Lean Left)

 Zoom- Tomato Soup and Grilled Cheese Sammies! Nom Nom

"We love the people that we love, because they are there for us when we feel like we can't face life alone and they remind us that we don't need to face life alone! We love the people that we love, because we know that when we cry, it hurts them, too. We love the people that we love because we share mutually in tears and in pains and in struggles and in hardships, and we know that because we are together, we can get through that— together! Because of the people we love, life becomes livable! Because of the people we love, we know that we have people to share with in not just the good parts of life; but in the hardships, as well! We will never have to carry our burdens alone, because these people love us!" - C. Joybell C.

Quietude

Both unknown and comforting all at once. Quietude.

Jessie is making progress. She laughs and smiles. She is still in the rehab hospital; we're hopeful she'll be discharged next week. I am happy and looking to the future...no more clinging to the past. LJ still doesn't sleep through the night. I am tired.

je t'aime mon amour

Don't forget I love you, Josh. Happy Valentine's Day! Love always wins!

"Love is at first not anything that means merging, giving over, and uniting with another...it is a high inducement to the individual to ripen, to become something in himself, to become world, to become world for himself for another's sake."

~ Rainer Maria Rilke

Been noticing how things are in my heart.  Since Jessie was transferred to a rehab hospital at the beginning of the week, the days have been like a roller-coaster, dizzying, exhausting and wagering over the soul.  Been acknowledging the emotions that subside and surface from the pleasant to the unpleasant especially since she received a feeding tube.  Doing a lot of inner work.  Trying to hold the difficult as sacred. It seems a lot of suffering begins at the surface of the mind.  Perhaps that is where we must do the work?  Starting there.  My hands are thrown up and I'll be screaming all the way to the bottom!

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.