Giving a don’t-touch-me daughter space and asking for prayers

ERTL procedure voluntary therapeutic amputation
‘I’m in a gang, ‘she says. ‘Perhaps you’ve heard of the Crips? ‘

Bad-ass, smart cookie, rough edges, tender heart, seashell ears (she hates that part). My daughter Shannon is having life-altering surgery at the end of the month. She does not want me with her.

No ‘smothering.’ I’ve prayed, I’ve cried, I’ve searched my heart with my own mother’s help. Shannon and I have gone over her plans (in her viewpoint, ad nauseum). Communication lines are open. I’m respecting her decision. I’m on standby. But I am calling my tribe to active duty. Prayer circle, start your engines!

We both are fire. Over 34 years there have been sparks, flames, outright explosions. I have asked forgiveness. The buttons I used to push consciously and unconsciously are forever deactivated. She wins. Love wins. A committed Roman Catholic, she’s received her annointing of the sick as well as an impromptu Baptist blessing that surely has her great-grandmothers smiling upon her from heavenly realms. Your blessings delivered in whatever fashion is meaningful to you are very much appreciated.

Tatted punk, wild child, train kid
“We didn’t know it was that bad,” is a common response to Shannon’s decision to have a below-the-knee amputation. Don’t feel bad, friends and loved ones. She puts up a really strong front. And she’s decided on this because she wants to get better. This is Shannon’s way to wellness.

For those of you wishing to know more, here’s the gist of the situation as excerpted from a letter to our family:

Hi beloved family!

The P-Stim procedure involving acupressure-point/electronic pulsations via a device attached to Shannon’s (seashell) ear to zap her chronic severe pain wasn’t as successful as we hoped. It irritated the heck out of Shan, both mentally and physically, lol, she commented “let’s see what it stimulates when I flush it down the toilet.” Apparently she’s not a good candidate as her electromagnetic energy made the Austrian-made device go whackadoo, buzzing constantly and giving her a headache.

So she has decided to do what she has been thinking about for a couple of years. She is going to have her foot removed. Surgery is scheduled for Tuesday, June 30.

Shannon’s surgeon has been suggesting this procedure, known as ERTL, for a couple of years. It will straighten her alignment to ease her back, neck and shoulder pain. Her gait, because she can’t put weight on the main of her left foot and that leg is shorter than the other, is hampered, and her shin-bone is as twisted as a gnarly tree branch. She will not have to be on heavy-duty painkillers. As you know, long-term use takes a terrible toll. So it would be good to be off that stuff.

After this procedure, which entails a few days in the hospital and at least three months of rehab, she will be able to walk without a cane. She can have more than one prosthetic; for example they are talking about a goalie/skating leg so she can begin skating again for fun and exercise, plus an everyday leg for the Doc Marten boots she favors.

The amputation will also end her osteopenia, the precursor of osteoporosis, caused by her inability to bear weight on the leg. The bone-thinning hasn’t yet spread. Doctors also believe that her chronic infections, cardiopulmonary issues, both legs swelling, bruising all over, etc. are from the Complex Regional Pain Syndrome in her foot and that these conditions will likely be alleviated, as will the CRPS, by removing her foot. It will be a below-the-knee procedure. I will share more details as available but in the meantime please keep the love and good thoughts flowing! Check out the links below if you want to know more about the whys and wherefores of ERTL (never fear, none of these show anything graphic!):

Rebekah DiMartino hurt in Boston Bombing had 12 surgeries, still had pain, and underwent the same procedure. She broke up with her limb on YouTube, writing on it “Sorry leg, it’s not you, it’s me.”

https://www.youtube.com/watch?v=vAfpqYPt5Z0

Here’s a rundown of how the procedure allows for weight-bearing and movement:

http://health.clevelandclinic.org/2013/05/amputees-new-high-tech-run-at-life-video/

One of many YouTube videos on people who have had this surgery:

https://www.youtube.com/watch?v=ob4nVxT-aVE

A note on CRPS: We always keep brochures from the National Institutes of Health on hand to pass along to health-care professionals and others who don’t understand what Shannon is experiencing or think she’s faking it. It’s amazing how many of them hand the brochures back to us. We keep trying. And stand guard over her foot, because bumping or even lightly it touching it causes her extreme pain. CRPS, sometimes called Reflex Sympathetic Dystrophy (RSD), is a real condition first diagnosed in Civil War days. You can receive brochures on diagnosis and treatment of CRPS or other neurological conditions at no cost simply by writing or ordering online at:

http://www.ninds.nih.gov/disorders/reflex_sympathetic_dystrophy/detail_reflex_sympathetic_dystrophy.htm

Metta Meditation and Prayers for Shannon
A feisty blend of defiance and self-reliance, this young woman is as untamed, unpredictable and heart-stoppingly beautiful as Lake Superior. Shannon seeks a life without limits. Once she completes the initial healing process she will be done with canes, crutches, wheelchairs – and unrelenting pain.

Bonus inspiration: The AmputeeOT Channel on YouTube offers frank and funny segments about what it’s like to experience an amputation, to heal and to wear a prosthetic. The videos give me a lot of hope, understanding and reason to smile. http://youtu.be/1VTBCWVsYgM

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4 thoughts on “Giving a don’t-touch-me daughter space and asking for prayers

  1. Sending loving healing prayer that your daughter heal quickly to end her pain. Also sending love and prayers to you and your family for healing from the pain the loved ones feel. Kris Webley, Jerrys daughter.

    Like

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