Shine the Divine:

Creativity IS a Spiritual Practice

When we see through our hearts, we recognize that every single one of us is infused with creativity. Divine Sparks are embedded in everyone and everything. It's up to us to be courageous, to look and listen deeply, to find the sparks, gather and release them back into the universe, transformed into something new. Join me as we wake up to the sacred-ordinary blessings waiting to greet us each and every day.

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Friday, February 6, 2009

Portions of Love

Portions of Love,
Not rations.
At times small when that is what’s needed
Yet always generous
Because of the place from which Love arises.
The heart ever expanding,
My heart
Breaking and healing
Fearful and full
of gratitude
At the unexpected turns this life is taking.

Portions of Love
For my daughters and husband
my parents, siblings, teachers and friends
students and strangers
nurses and doctors
who meet me in the place that they are
hearts present
my heart
receiving and offering
measured moments
of accepting
the blessings that are hidden in seemingly blemished fruits

gifts revealed
after the swift intake of breath
in the sigh of relief
another day has passed
and we are still here
a family intact
growing stronger
each portion of love
grand, lavish, delectable
more than enough
to fill the holes anxiety
attempts to eat away from our souls
but cannot.

I'm in conflict about sharing the details of the past two and a half months on this blog. It's my story, but it's also the story of my family, and specifically my youngest daughter. The poem above expresses some of the feelings I've experienced as we have been in and out of the hospital. I say "we" because while my daughter was hospitalized I stayed in the room with her. It's only in the last 2 weeks that we have been apart from each other a few more hours each day as she eases back into school.

This blog is dedicated to creativity as a spiritual practice...and let me tell you, everything I have learned over the years as a creative being walking a path of ever deepening spiritual awareness has been drawn upon in this leg of the journey! From how to wrap an NG tube with colorful sewing floss (so it looks more like a funky hair accessory) to being a guide as my daughter discovers the blessings found during a physically and emotionally painful time in her young life. Writing messages to friends and family has been my most treasured creative outlet during this time. That, creating a few SoulCollage cards and crocheting until my elbow aches.

My scanner is being difficult...I'll get the images up when I can...meanwhile I will publish here portions of the writings...like portions of love that I hope will be meaningful even to strangers reading this blog. To my friends and family who have already read all of this and responded with bountiful love and support, I'm sorry to be refilling your in boxes yet again with this blog update.

My daughter was admitted to the hospital two weeks (before the second hospitalization) because she had persistent fevers and her white cell count was elevated. At that time the thought was that she had a "normal" kids virus that she was having difficulty beating because her immune system has been suppressed from the medications she is taking for the Crohn's. (this was after ruling out a lot of other possibilities) She was only in for two days and looked good when they sent us (I get to stay with her) home. The next night at 1:30 she vomited again and her fever went back up. And back down...but not to normal. Anyway... the fevers have continued since New Years day. For the past few days her lab results (we were home) kept looking worse and worse. They admitted her again late yesterday afternoon. She is quite malnourished at this point and pretty sick. Now the feeling is that this is a bigger flare of Crohn's than they thought. She's here in the hospital to be tube fed , observed, and to do some more studies so we can change her therapy to one that will manage her disease better.

First night in the hospital after her tube was inserted:
Her biggest fear (understandably) was that she was going to die. I promised her that this was the worst night, a scary night, but that she wasn't here to die, but to get well. It was so heart wrenching...I cried as they placed the tube...because she was so terrified...it wasn't the physical discomfort as much as the fear the surrounded it...it's so hard to witness that kind of suffering in your own child. I sang to her (an invocation of protective angels), we meditated, we prayed together. I had tears in my eyes as I sang...she noticed (this is when she expressed her fear about dying) I promised that this was not why I was crying. I told her I wasn't scared any more. That we were in the best, safest possible place. That feeding her this way was the absolute best way to make her well....and that I was crying because I was sad to see her so frightened and suffering. Because I love her. Finally around midnight she relaxed enough to fall asleep.

The sun is rising now over many tall Boston buildings-I don't know this city so I can't tell you what they are...probably other medical centers.
The energy in the room is much calmer than last night. The nurse is adjusting the tape on the tube, trying to make her a little more comfortable. My heart is filled with gratitude for the compassion each and every nurse has offered to my child and to me since we arrived yesterday. It was a long night...but in this moment I can feel the serenity of the Sabbath.
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After eight days in the hospital:
We are settling in to "some-kind-of-new-normal". Adjusting to evening tube feedings and special hair washing techniques and medicine routines. Yesterdays re- intubation was once again pretty darned traumatic, (a 3 hour process YIKES!) so I'm really glad we did it in Boston and not with a home health nurse here at home. Her anxiety level is off the charts,...but despite how difficult it was, I noticed some improvement in her ability to gradually calm her breathing down. The good news is that the new tube is smaller (infant sized), so it's much more comfortable for her...

Every day seems to bring new challenges, and one by one we are learning to face them.
As sad as my daughter gets sometimes, I think she is learning to process and articulate her emotions very well, she is learning to grieve...and this will be a blessing as she goes through life and has the tools she needs down the road and faces other kinds of losses.
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A few days later:
On my way into work yesterday I heard a "this I believe" essay from a physician at Penn who has multiple sclerosis. http://www.thisibelieve.org/dsp_ShowEssay.php?uid=15222&topessays=1 . In her essay, Dr Connil spoke about the value of listening as a healing practice that physicians need to remember. It's so key. Speaking from our hearts. Listening to someone's story. This is to me the essence of what it means to be human. To be the speaker. To be the listener.

Sunday evening, before bed, after I started my daughter's feeding and tucked her in she put her thin arms around me and said she needed to hug. So I held her for a few moments in silence. Then she said "Mommy, your not like other Mom's, and that's a good thing. I'm so glad your My Mom." I told her that in all of this suffering and fear and pain that that's the blessing. Recognizing the love we have for each other in the circle of our family. And we took a moment to say Thank you God. Amen.

Later she had a horrible nosebleed at 1am...we couldn't get the blood to stop gushing until 15 minutes later...it was flowing out the side with the ngtube. We were about five minutes away from dialing 911 because she kept saying "mommy I feel like when they give me anesthesia"- meaning she was close to passing out. It looked like so much blood soaking paper towel after paper towel. But thanks to my fabulous medical training (ha, ha!) I was able to get the bleeding under control...

This is the hardest, most complicated yoga/life pose I've ever held. It takes balance, strength, courage, compassion, faith and the purest kind of love possible. I took some time to just lay down and rest after meditating today. I'm exhausted too. I had several rushes of energy flow down my spine and out my feet. I felt fear, relief, more fear. I talked myself through it using the "what's happening now" prompt from Phoenix Rising. It was powerful just to feel my body and my emotions.

Last night in my meditation practice, (before bed) I noticed that when I was carried into thought that my posture had shifted. My head was inclined so that my right ear was tucking in toward my heart...I realized that along with embracing silence, I also need to take time to listen to the stories and the wisdom of my heart. I returned to my breath...again and again with the mantra "hineni", doing my best to stay with the meditation, with the moment at hand.

Debarti -I have spoken....Shemati-I have listened.
Maybe the pose of mother, of human, isn't so hard if I can just remember that.
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Yesterday a nurse we love at the pediatricians office made an offhand comment about noticing the fullness in my daughter's face from the Prednisone. It was so casual, and I know she meant no harm. She has gained about 11 pounds in 9 weeks. This is good. This is what we want.

Meanwhile, it suddenly woke something in her and she began to be aware of her changing appearance. These are the concerns of many twelve year old girls...this is a normal time for her body to soften and grow. It's just happened so quickly for her. She looks healthy for the first time in years, (even if she doesn't feel well a lot of the time yet) but her concept of "what she's supposed to look like" is a much thinner person. (This is no doubt a familiar kind of awakening to many of us too!)

So as she sat in the bath, looking at her swollen belly (from disease), and we had a powerful conversation about body image and how life, our thoughts, our feelings and even our bodies are in a constant state of change. She shed many tears and recognized that she was grieving for what was gone. She said she was sad and wanted her old self back. I listened. I wrapped her in a towel. I listened some more, I hugged her. I explained to her that more than one thing happens at a time. That although certain things were clearly different and changing, the "little child" who lives inside of her would never, ever go away. That she would always be herself. That my "little child" still lived quite happily inside of me, even at nearly 44.

It's difficult to hold seemingly conflicting realities in our awareness at the same time as adults. Fear and Love coexist for me right now. Longing and Gratitude. For a child who is at a "black and white" stage developmentally this is no simple thing to grasp. "I am the same and I am changing".

I found a photograph of her at age two and a half. Cheeks full, eyes bright. I showed it to her. "This is you! Look how happy and healthy you are in this picture. You have not seen yourself in this full, soft way in many years because this illness has been a gradual process." So then it was, "I don't want to look like a two year old!"
and she laughed at herself. Because that sounded like a two year old speaking. We are growing in so many ways. All of us.
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With my daughter's permission I send this story, our story out into the blog universe...with a prayer that all of us learn to open our hearts to each other in whatever way we can...that we focus our eyes, even through tears so that we may see the blessings set out before us...that we accept the portions of love we are given each day...because love is enough.

A sweet Sabbath to all

4 comments:

  1. Laura...
    My heart is reaching out to you...your daughter and your family...Thank you and your daughter for allowing you to share your story...It is a story of heart...of love...of healing...I am in the middle of a similar story, but with my husband...May we all continue to ENJOY the day...one day at a time..May we all continue to heal...and be healed...May we all continue to love to the highest we can...And may we all learn these lessons of life gently...My heart is with you.
    Artfully Yours,
    Pattie
    http://www.livingwithmyshadow.blogspot.com

    ReplyDelete
  2. Thank you and your daughter for sharing this story. It is truly a gift from you to us. I wept and smiled while reading and I hold you both in my highest, most healing and loving thoughts.

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  3. Dear Laura, I followed a link from Lisa Plummer's blog and found myself here a while later, and want to thank you for sharing that story. The reaching out with your open heart has touched me so much, and the tenderness of your care for your daughter ... has been special to me. It's a reminder of what really matters, on a day after I'd had a silly disagreement with my son, I'm glad to be reminded of that. Thank you.
    [Perhaps we have shared something via Kaleidosoul (I'm a facilitator of SoulCollage too), but I know I hadn't encountered your blogs before. ]

    Blessings to you, your daughter, and all your family.

    ReplyDelete
  4. I liked this...

    "Portions of Love,
    Not rations."

    The two seem the same at first glance, but there is truly a difference.

    ReplyDelete

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