Help My Sister

Where do I start?  The hurt child inside of me wants to go back to wrongs that were done to me, my sister, my mother, and others that I love.  She wants to be angry and yell from the tops of the hills that crimes against children are from the pit of hell and should have stayed there.  The daughter that I am wishes that I could have done better, loved more and feared less.  The adult within my heart wants to have a do-over as a parent, as a wife, as a sister, as a friend.  But if I go back there now, then I can’t concentrate on the tragedy at hand.  For now, God wants me to live here, in the present.  He wants my sister and me to live in the here and now and cherish what we have together.  So here is our short story and my plea for help. Just the basic facts and reality of our lives will be discussed.  There will be a time for going back and sharing where we came from, later.

I am about to turn 52.  I left home when I was 17, leaving behind a 14 year old sister, a 12 year old brother and our parents.  I moved out of the State of Maine and to Massachusetts in 1980.  I made lots of mistakes along the way, married twice, have 5 adult children and 3 grandchildren.  When I was 30 (1992) I asked Jesus Christ to be my Savior and my husband and I have lived our lives as Christians ever since.  The night that my sister Robin graduated from high school in 1982 she was asked to leave home.  She was put out on the street in the middle of the night.  She hitchhiked around, not really knowing where she would end up, what State she would live in, or what would happen to her.  She was young, naïve, penniless, and desperate for somebody – anybody -- to love her.  She was involved in many abusive relationships, and married numerous times over the years.  She knows what it is to be hungry, beaten, raped, left for dead and homeless…but she persevered.  For reasons that aren’t important to discuss at this writing, she lost her babies to a woman who abused the system while fostering and/or adopting children. She would abuse these children in ways too numerous to go into right now.  This woman is currently not fostering any children, and has been institutionalized in Florida for Munchausen’s by Proxy.  Two of these abused children were Robin’s – my 28 year old niece (Shawnna, aka Brittany) and my 26 year old nephew (Daniel).  Robin had to live most of her adult life without her children.  They never knew anything about their mother except lies that were told to them about her being a Satan-worshiping monster who sacrificed children.  These accusations were completely false.  Not personally knowing anything about my sister, I also believed the stories that I heard, and raised my children to fear and avoid her at all cost.  I thought she was a witch, a horrible person who would try to steal my children because hers had been taken away from her. I believed lies and stories that had been fabricated against her, and I perpetuated them.  She thought that I was partially responsible for the hand that she had been dealt in life, and lived her life accordingly.  My friends and family thought she was a monster, and her new friends and family thought the same about me.  As I raised my children I was sick in my heart that there were two cousins that they would never meet.  I had a niece and a nephew that I would never know.  It was heartbreaking. 

Robin ended up living for years in the back woods of Kentucky. She had family and friends and was living the best that she could.  Her life was not completely happy or without incidence, but she had relationships that would sustain her for these years.  She knew the love of helping to raise children, and developed loving sisterly and motherly relationships – relationships she had never had as a child or an adult – relationships that she still has to this day.  About 10 years ago God brought Pete into her life.  He was formerly in the Canadian military, working as a photographer until retiring and now works as an IT specialist.   After a few months, one thing led to another and he came to Kentucky and claimed her as his wife. He married her and brought her to Canada to live the rest of her life with him.  They are, and have always been head over heels in love with each other.  He is the best thing that ever happened to her.  God has also performed several other miracles.  He exposed her children’s adopted mother for the abuser that she was, and when they were able, they moved out and moved on.  Although their lives are difficult and wrought with struggling, poverty and sometimes homelessness, they are moving on, and have established a relationship with their mother – my sister.  Robin has met her son Daniel, but has only spoken with her daughter (who now goes by Brittany).  They speak on the phone and text whenever they can.  However because Robin lives in Canada, they have to keep most of their communication on Facebook because of the cost.  They still have not met face to face. 

One day early in 2013, Robin and I both ended up with friend requests from each other on Facebook.  Neither of us can recall initiating this contact, (God, do You have a computer??!) but we became friends and just looked on each other’s timelines, not daring to make contact. Then on February 13 Robin’s son had a question about his medical history and she couldn't answer his question, so she asked me a couple of questions, and wished me a happy birthday.  I said thank you and then we had no contact until late August, when I wished her a happy birthday.  I asked her if her profile picture was recent, and if it was how she got so skinny.  You see, my sister has always been a big girl, and about 5’ 6” tall.  So for me to see her so tiny (105 lbs.) gave me cause for concern.  She couldn’t believe that I was bold enough to just ask her outright, and she boldly answered me back.  She told me things that she never thought she’d ever share with any of her old family.  She and I have been inseparable since then.  She shared that she has been a bible-believing Christian for her entire life.  We have been able to share this common faith, both having God’s hand on us all these years.  We have had contact every day by Facebook, by e-mail, by text, by cell phone.  My husband took me to Canada to meet her and Pete in November.  We had Thanksgiving together.  We had Christmas together.  We made up for 35 years that we have been separated from each other.  We fell in love with each other!  We have loved each other more in a few months than we have in an entire lifetime!  Although we have had many conversations about how we got to this point in our lives, we know most of all that GOD brought us back together!  She is a landed immigrant to the country of Canada and working on dual citizenship.  She is in love with a wonderful man who has brought her the first real happiness she has ever known, and she has her sister back!  Now…for the tragic part of the story…

Over the years Robin has been plagued with many illnesses.  She has had numerous surgeries for appendicitis, adhesions, pre-cancer lumpectomies, hysterectomy, etc.  In 1992 she was in a horrible car accident and sustained severe nerve damage to her legs, paralyzing her for 19 weeks.  In 2006 after moving to Canada, she slipped and fell on the ice and sustained an injury to her left leg and foot.  For almost two years she was treated as if she simply had a sprain that would not heal.  X-Rays showed no breaks or fractures.  Although they asked for an MRI to be performed, they were denied for a very long time.  When the MRI was finally performed, it revealed that she had severed the tendons and ligaments in her leg.  At this point so far after the injury, the doctors told them that there was nothing they could do to repair the damage.  She was diagnosed with CRPS (complex regional pain syndrome) and was told that she needed to lose weight or it would become debilitating, causing her to be relegated to a wheel chair for the rest of her life. She had soared to over 300 lbs. in the time that she was incapacitated because of the injury. 

 

She lost a lot of weight, but was told that it wasn't enough, and that the only chance she had of not becoming permanently disabled was to have gastric bypass surgery.  It was planned that she would have a Roux En-Y (RNY), which was the "gold standard" for this kind of surgery at that time.  So in October of 2011, at 186 lbs., she was scheduled to have the operation at a hospital in Ottawa.  After they started the procedure they realized that she had too much internal adhesion damage to perform the surgery properly.  So instead of closing her up and consulting with her, or consulting with her husband, they performed a different surgery, removing most of her stomach and making a smaller-than-normal  gastric sleeve.  She woke up from the surgery and was told that it went well (and that they had also fixed a hernia while they were in there).  She stayed in the hospital for a few days and was sent home.  It wasn't until her 6 week follow-up appointment that the doctors told her about the change in procedure, and that the hernia that they repaired was a hiatal hernia.  When Robin and Pete questioned them as to why they would do different and/or additional procedures without permission, the doctors dropped her case and she received no further aftercare for nearly a year.  Robin had started to lose weight as expected, but over the next several months, she started to lose weight at an alarming rate.  As of November 2013 she had gone from 186 lbs. at the time of the surgery to 98.3 lbs.  She hasn't been able to give her body enough nutrients to completely sustain life, barely able to get in 500 calories a day. She is skin and bones.

This picture was taken at 105 lbs.

Her most recent doctors are alarmed.  They say there is nothing that can be done for her, and that she needs to consider having a permanent feeding tube put in.  However, the doctors doubt that her weakened body will do well in the procedure to put it in, or that she’ll be able to tolerate the formula that they have to give her.  They say that even if it works, she will have to be connected to it for 12 hours a day by IV, and that there is no guarantee that it will prolong her life.  They are suggesting that she just let them treat her symptoms and refer her to a palliative care physician.  They say she is terminal, and will probably die within the year without a miraculous, divine intervention. 

She has 0% body fat.  Her urine is black and her kidneys are starting to shut down.  She only has bowel movements every 3-6 weeks, and they are accompanied with horrible bouts of pain that land her in bed on liquid morphine.  Her CRPS continues to quickly progress.  That, combined with not having any energy because of lack of nutrients, she often finds herself in bed for days at a time instead of being able to take care of the elderly clientele that she has developed over the years.  She has gone from a strong, vibrant, energetic, person to a skeletal frame.  Getting enough nourishment to keep her body going has become a daily battle that she is losing very quickly. 

She is loved by all who know her. She is a musician and singer.  She is a cook.  She takes care of elderly people and cleans houses.  She breeds dogs.  She is a landscaper.  She is a Christian.  She is a mother and wife and sister for the first time in her life.  Brittany has been accepted into the local community college where she lives in Kansas, and is going to major in nursing.  We have never met Brittany, and although Pete cannot accompany her, he is trying to save as much money as he can so that Robin and I can fly to Wichita and meet her and so I can meet Daniel.  She has everything in the world to live for, and her family and friends are watching her waste away to nothing. 

So here is my plea.  The United States is a country with the most advanced medical care anywhere in the world.  I have seen stories about people who were dying of terminal illness and were saved with the intervention of teams of doctors and specialists who were put together by people with the financial means and humanitarian will to make it happen! There have to be doctors SOMEWHERE that can help my sister.  We are in the age of bionic body parts and successful organ transplants.  We live in a country where hearts are made of man-made materials.  We have been told that there has never been a successful stomach transplant. But if nothing is done, my sister is going to die very quickly, right before our eyes.  Because she was denied an MRI years ago, and because she received a surgery that should never have been performed, she is going to lose her life.  To have spent 35 years apart, to be brought back together and be real sisters for the first time, and have to say goodbye to each other after such a sort time would be tragic.  Please share this with everybody that you can.  This is not an internet hoax.  We are real people with real families and real needs.  We know that Robin’s destiny is in God’s hands.  We can only pray that it’s His will for her life to be saved so that she can be a testimony of so many miracles! 

God bless you!

Jo Ann Marino

Cape Cod, Massachusetts