Hope in the Strangest Places

Three weeks ago, Amy died.  She was 42.  I don't know Amy and have never met her.  I do know one very important thing about her though.  Amy died from complications of Ehlers-Danlos Syndrome, a progressive, degenerative condition.  The same condition my boy, Jonathan, has.  When I saw the notice of Amy's passing, my heart sank.  While no one knows for sure what the ultimate result of Jonathan's journey with EDS will be, we do know one thing.  As a genetic disease, there is no cure.  No surgery, no treatment, no pill that will make him well.  To dwell on this is devastating.  My heart ached for Amy's family.  However, as I continued to read, my heart began to fill with something...something like hope.  This is how Amy's family described her:

She attended Smith College and it was during her freshman year that she was first confined to a wheelchair. It was the impetus for her lifelong interest and passion to improve accessibility for those with special needs. To further this interest, she left Smith after her freshman year to volunteer her time with the Disability Rights Advocates, in Berkeley CA, an agency in the forefront during the early days of the ADA. She returned to Smith, where she served on the Northampton MA Zoning Board and addressed architectural standards for accessibility in public spaces. She graduated Smith in 1995 with a dual major in music and anthropology. 
As part of her senior thesis program Amy spent a year at Union College in southeast Kentucky. Her focus was Appalachian Studies, Culture and Music. She enriched that experience by joining weekly Bluegrass music gatherings with regional musicians, singing and playing the guitar. When she returned to Louisville in 1995 she and and her husband brought together bluegrass musicians from all corners of the state for jam sessions at their home in the Highlands. 

In 1996 she and her husband started a consulting firm that prospered until her condition worsened and the business demands were too great for her failing health. During that time she volunteered at the School for the Blind and recorded technical books that would aid those with sight impairment. These books required advanced skill in Information Technology and the ability to transform mathematical formulas, charts and graphs so that they could be understood by the visually impaired. Amy was a former member of the Louisville Downtown Rotary where she donated many hours of her IT skills. She served on the Board of Directors of The de Paul School. A primary contribution as a board member was to completely revise and rewrite the technology infrastructure for the school and empower teachers and students by bringing technology to the classroom. 

She was a Official Judge at the Kentucky State Fair for Knitting and textiles. Amy wrote grants, created business plans, and offered her IT acumen to create networks for non-profit organizations locally and across Kentucky. 

Her health may have limited her ability to navigate the world as others might, but she had the unique ability to bring the world to her bedside. Her interests were great: Photography, drawing, metal work, cuisines of the world, knitting, textiles, spirituality and natural medicinal arts, and always music. Although she was confined to her bed for most of the last seven years Amy remained focused on her life interests, which always were growing in scope and number.

She was the best kind of friend. Even while her physical abilities were shrinking, she continued to expand the world of others by teaching and sharing her talents and she made it seem effortless. The regimen of her health care played havoc with her physical body but she remained beautiful in her spirit to the end; charismatic, courageous, funny, generous and loving. Through all of these challenging years, it was maintaining her independence that was important to her core happiness. 

As a mother who loves her child, I have spent countless hours worrying about his future.  "Can't" and "If" seem to circle in my brain almost constantly.  I want the best life possible for him but honestly, sometimes it's hard to dream of anything other than pain, medications, doctors, tests, and FEAR.  So while I was initially shocked by this obituary, by the time I finished reading it, I found that I had a sense of hope.  There's nothing we cannot do with God's help and a determined spirit.

When I was 17, I believed in fairy tales.  After all, if a kindergarten teacher could marry a prince, then fairy tales must be true.  I think most of the women I know now had a fascination with Diana.  

We believed in happily ever after and watched with stars in our eyes as Diana exited her carriage in her beautiful princess dress, walked down the aisle and pledged her love to Charles. (We also set our alarm clocks so that we could watch the wedding live.)  


Most of us felt horribly betrayed when, years later, it was revealed that Charles' true love was Camilla and he'd been having an affair with her throughout most of their marriage.  We cheered when Diana made her public appearance after the divorce in the "little black dress", showing Charles exactly what he'd lost.  

And we listened in horror as we awoke on that Sunday morning to the news of her car accident and death in August of 1997.  This time, we watched with tears in our eyes as her funeral was televised all over the world.  (We watched from an airport in Dallas, Texas on the way to Hawaii.)

This past Sunday, I took a break from my retail frenzied world, and went with a friend to the Frazier Museum and viewed the Diana: A Celebration exhibit.  It was a wonderfully touching tribute to a woman who was so much a part of my memories.  

I loved viewing parts of her childhood and since she was only a few years older than me, we shared some interests (although I never had a real live camel at one of my birthday parties.)

The exhibit contains many photos and mementos but two were my favorites.

First: the Wedding Dress, veil, shoes and parasol

Did you know that  Graeme Murton and Nick Grossmark are the only two individuals in the world  permitted to touch Diana’s nearly two-pound silk, ivory wedding gown?
Or...

•  The entire wedding gown is hand-embroidered with more that 10,000 tiny mother-of-pearl sequins and pearls.
• The 25 foot silk train is the longest in royal history.
• The dress was made of six different fabrics including 25 yards of silk taffeta, 100 yards or tulle crinoline and 150 yards of netting for the veil.
• Diana observed tradition by wearing old antique lace, new silk specially spun at Lullington silk farm in Dorset, a borrowed tiara from the Spencer family collection, and a small blue bow sewn into the waistband of her dress for good luck.
• Diana’s low-heeled slippers were made of ivory silk, top-stiched with pearls and sequins, with suede soles etched in gold.

My Second favorite thing was the Prayer Book that Mother Theresa gave to Princess Diana.

Imagine my surprise (and delight) to discover that it was a copy of the Daily Light.  Since I've used a copy of this for years, I felt an additional kinship to both Diana and Mother Theresa.  (After all we had in common, I'm sure she wouldn't mind me calling her by her first name.)

As we left the exhibit, my friend and I discussed all of the ways Diana's life had changed the world around her.  She not only changed the way we viewed AIDS patients, she reminded us of our responsibility to care for those less fortunate than us and to fight the injustices of the world.  She changed the way royal children were raised (no nannies) and I think William and Harry are better people because of it.  

I guess the most important lesson of all is that while life doesn't always have the "fairy tale" ending you envisioned, you can still make a difference.

 Nothing brings me more happiness than trying to help the most vulnerable people in society. It is a goal and an essential part of my life - a kind of destiny. Whoever is in distress can call on me. I will come running wherever they are.~

Princess Diana 

December

Wow, I can't believe December is a third over already.  Or that 2012 is almost done!  Honestly, I won't be sad to see it go but I also understand that 2013 comes with no promises.

Dad is doing fairly well now but he doesn't want to go to the hematologist so he's refusing to make an appointment.  I'm going to have to put my foot down and insist, I suppose.  This is always awkward for me.  After all, I am the child and he is the parent.  I do, however, understand why he doesn't want to go.  They will do another bone marrow biopsy and he really didn't enjoy the last one.  Plus he knows (or thinks he does) what they are going to tell him and he really doesn't want to hear it.  Well, neither do I, but I want him to do everything he can to improve his health.  I guess it's a fine line to walk.  I don't want him to give up (especially since he's not absolutely sure what the doctor is going to tell him) and I don't want to make him do something that will make him miserable.  It really was so much easier when he made the decisions and I obeyed them.  (or disobeyed, depending on who you talk to.)  

the day

Life lately has been a series of moments,so I have no idea why having "a moment" today would surprise me.  It's black Friday weekend.  I won't dignify that with capital letter status.  I won't vent my feelings about shopping madness, bargain hunting or tacky behavior.  I will say, being a retail lifer, that I was scheduled to work this weekend.  And Friday I did.  I went to bed at 8ish on Thanksgiving night so that I would be fresh as a daisy for my 5 a.m. work time the next day.  Saturday morning dawned much the same.  I arrived at work, began sorting paperwork and then...my mother called.  My dad was having issues and needed to go to the hospital.  I needed to take him.  He wouldn't go without me making him.

Off we went.  The initial check-in was uneventful.  We were placed in a room with two patient beds, a thin curtain separating us from our neighbor.  Which was fine.  Until our neighbor decided he had to pee.  In the room.  In a bottle.  Loudly.  Awkward doesn't begin to express sitting there having a conversation with your father while obvious pee sounds (and smells) come from five or six feet away.

Time passes.  Our neighbor goes home.  A new neighbor arrives and leaves.  Dad has tests, sees the doctor, and sees the doctor again.  We wait.  And a new patient arrives.  Brought in by EMTs.  Along with his daughter and son.  While the man is able to speak in the beginning, it becomes obvious within a few minutes that he is less and less responsive.  The daughter shares with the nurse that her father has stage four brain cancer.  Was given sixteen weeks to live close to two years ago.  After a few more moments, he begins to convulse.

It is the worst sound I have ever heard.

And it seemed to go on forever.  People rushing around, calling for bite blocks, medications, daughter and son standing by helplessly, all while this unearthly groaning and gasping comes forth from this poor man's body.  Finally the medications silence his moans but I can still see his body seizing through the opening in the curtain.  He continues to do so the remainder of the time that we are in the room with him.  While his daughter discusses his DNR order.  While the cancer doctor talks about living in a comatose state isn't really living. While the nurse apologizes to the son for what he's witnessed and the son replies that "unfortunately, you get used to it."

We left for our room (dad had been admitted to the hospital), and we left this family behind.  They will, however, continue to be in my prayers.

We headed to his room.  Got him settled.  One of his doctor's came by and was very encouraging and optimistic.  If he does well tonight, he will go home tomorrow.  After eating peanut butter and crackers, he declared that he wanted to take a walk.  (One of the blessings for him is that he isn't attached to any machines and can wear his own clothes.)  I decided to take a moment to call Josh and then head home on the hospital phone as he and my mom walked down the hallway.  After leaving a message for Josh, I walked out of the room and looked down the hall.  And saw a scene that captured my heart.

See, my mom and dad bicker.  Nitpick.  Fuss.  Argue.  A lot.  It's aggravating sometimes. But today, as I saw them, I was reminded that they love each other dearly.  They were leaning against the glass wall, bodies curved toward each other, Mom smiling as dad gestured and talked, all with the afternoon sun shining over the tops of their heads.  It was such a sweet picture, one that I will carry in my heart and mind for a long, long time.

Which makes it a good day after all.

30 Days of Thankfulness-Day 12ish

I had a doctor's appointment today.  Actually, it was a follow up appointment that was made six weeks earlier to confirm that my medication adjustments are doing what they are supposed to be doing.  However, the problem with my hands is getting progressively worse, with obvious weakness, extreme pain and difficulty doing simple tasks.  While I was there, the doctor ordered additional x-rays done and scheduled an MRI.  We then scheduled another follow up appointment, this one in less than 4 weeks, and made another medication adjustment.  

What is the point of my sharing this exciting portion of my life story?  I knew six weeks ago that I was going to the doctor today.  I knew exactly when I was going, who my doctor was going to be and what was going to happen when I got there.  I know (approximately) the cost and I know that my insurance company will pay a portion of the bill.   I have complete faith that whatever tests need to be done will be done.  I know that my prescriptions will be filled and I know that if my physical condition worsens, the doctor is only a phone call away.  There are also several hospitals available to me if I need that kind of care.  

But it's not this way for everyone.    My beautiful Natacha, who is 8, lives in Burkina Faso.  According to UNICEF:    Around one fifth of all children die before they reach the age of five. 
The major causes of this high child mortality in Burkina Faso are malaria; vaccine-preventable diseases like measles; under-nutrition; diarrhea; and acute respiratory infections due to dust pollution.  A 2003 study showed that 39% of all Burkina children under five were underweight, evidence of widespread chronic under-nutrition. Nineteen per cent of under-fives suffered from acute under-nutrition, or wasting.

So, I am thankful.  

What day is this anyway?

Today is the International Day of Prayer for the Persecuted Church.  Call it naivete, but it's hard for me to imagine that there are churches and believers being persecuted in this day and age.  After all, it's 2012.  We are an enlightened people, right?  And yet, Open Doors has 50 Countries on their World Watch list. (the watch list is a list of the top countries where persecution of Christians is most severe.)

Today's featured country is Belarus.  According to Open Doors, Often considered the last surviving dictatorship in Europe, the government of Belarus allows almost no political opposition. The Orthodox Church is the only officially recognized denomination. Unregistered religious activity can result in imprisonment or heavy fines. Unregistered churches are monitored by the secret police and violent raids occur frequently. Because the numbers of evangelical and Pentecostal Christians is growing, persecution is intensifying. Two leaders of the Belarusian Christian Democratic party were sentenced to labor camp in 2011, but were later freed. Another was imprisoned and subjected to psychological torture. 

Interesting enough, the main thing I remember about Belarus is their participation in the Olympics.  They seemed like happy, proud, normal people. No different than me (other than the incredible amount of athletic ability.) I would never guess that they are 42nd in severe persecution of Christians.

In 2011, Open Doors delivered more than 3.1 million Bibles, study Bibles, children’s Bibles, training materials and other Christian materials to persecuted believers in 50 countries. Open Doors trained 263,542 people from theological courses to shorter seminars. Also in 2011, Open Doors served 172,137 through community development projects.


This is not a post promoting Open Doors.  You'll find most of the same information at Voice of the Martyrs.  The point is awareness.  No matter how "difficult" it is to be a Christian in the United States, it in no way compares to what other believers experience at the hands of friends, families and their government.  So, today not only am I thankful that I live in a country where I can worship and follow the Way, I am thankful that there are organizations who are willing to serve and assist those who are willing to give their lives for my beautiful God.  

Missing

You may have noticed that yesterday's post is missing.  Yesterday was a difficult day.  Mostly consumed with pain.  Not sure how today will develop.  But...