Life is Not Defined by a Diagnosis

by Sheryl Crosier, author of I Am Not a Syndrome-My Name is Simon

We’ve all heard of the struggles and hardships of those who became quadriplegics as the result of tragic accidents; or, the successful veteran who became a statistic when he lost his battle to cancer.  But, withholding nutrition and medical care is something that only happens in Chinese orphanages, not in The United States of America (where ALL have the inalienable right to life)…or does it?

My name is Sheryl Crosier, and I witnessed the struggles of my quadriplegic brother, David; and I recall my Marine veteran and successful engineer father feeling like a statistic when his oncologist offered no hope; and I adopted a severely malnourished 4-year-old girl with special needs from an orphanage in China.  But, the most devastating experience of all was the medical discrimination and denial of care experienced by my infant son, Simon, during his 3 months of life, all spent in a United States hospital.

My husband Scott and I have been married for 21 years, and our sons Samuel and Sean were born in 2003 and 2004.  Following the devastation of six miscarriages and genetic testing that revealed a predisposition to miscarry girls, we gave birth to our son Simon, in September 2010.  On his third day of life, Simon was diagnosed with Trisomy 18 (aka Edwards syndrome), and our lives revolved around him and his hospital room.  Family and friends spent many hours cuddling Simon and interacting with him; and, I diligently pumped breast milk to be fed to him through a tube in his nose, because his bilateral cleft lip made it difficult for him to nurse normally.

Boys with SimonAs Simon neared three months of age, we began the process of preparing for surgery to repair his heart.  However, just days before the scheduled pre-surgery consultation, tragedy struck!  On December 3rd, our son’s oxygen levels dropped and we pleaded with medical staff to intervene.  But, to our shock and dismay, no “code blue” resuscitation was engaged, while we were calmly informed that this was the end and nothing could be done. So at 10:45 am, we watched our sweet baby Simon take his last breath, inside a hospital surrounded by unengaged medical experts, whom we had employed to save our son!

It wasn’t until a nurse compassionately informed us that their hands were tied and encouraged us to closely examine Simon’s medical records, that we learned the gut-wrenching truth!  Unbeknownst to us, a doctor had placed a Do Not Resuscitate (DNR) Order on Simon. He; ordered only comfort feeds (which is the least amount of food to sustain life); and , prescribed a medication that expedited his death.  But, the most shocking revelation of all was that ours is not an isolated incident.

However, out of the ashes of our grief we found the joy of adopting our daughter Sabella, from an orphanage in China.  When I was barely pregnant with Simon, God was already preparing for us the daughter we thought we’d never have, as He rescued infant Sabella from the winter elements and placed her in a Chinese orphanage, where she was kept alive with minimal nutrition.  When Sabella joined our family as a 4-year-old, she weighed 23 pounds, and her first meal lasted an hour and a half.  It broke our hearts to imagine the level of deprivation she had experienced in her young life.  Now, Sabella is a happy and thriving 13-year-old, who exemplifies God’s amazing power of restoration!

While Simon (whose name means “to be heard”) taught us the value of unconditional love, Sabella (whose name means “to be consecrated / made holy”) continues to teach us to enjoy each moment.  Consequently, it has become our passion to advocate for the medically vulnerable and adoption of children with special needs.  Thus, the vision of our non-profit organizations is to be a nationwide network of families, guardians, and professionals that advocate for the core missions of Simon’s Law and Simon’s Kids.

So, would any of you want a third party determining the value of your child’s life?  Should it be legal to place a Do Not Resuscitate (DNR) Order on a child; or, withhold medical procedures, medication, food, or water, in an effort to hasten death, without written parental knowledge or consent?

Well, Simon’s Law says “NO!”  And, our mission is to create national awareness and protection for medically endangered pediatric dependents with life- threatening diagnosis through education, accountability, parental rights legislation, and Patients’ Bill of Rights.  Not only have we seen the passage of Simon’s Law legislation in 9 states (Kansas, South Dakota, Arizona, Missouri, Idaho, Arkansas, Iowa, Georgia, and Alabama), but we are also pleased to announce that the Simon Crosier Act will soon be reintroduced in Congress by Congressman Jake LaTurner.

Additionally, the mission of Simon’s Kids is to seek and foster fair and equal access to life saving medical treatment for pediatric dependents with life threatening diagnosis by equipping and empowering parents/legal guardians, through education, advocacy, resources, and national awareness.  Such information and resources include our SimonsLaw.org website and Simon’s Law / Simon’s Kid’s Community Facebook page.  Simon’s complete story is recorded in the books titled I Am Not a Syndrome-My Name is Simon and Hello My Name is Simon, as well as featured in the 2014 award winning documentary on medical discrimination, titled Labeled.

Therefore, I urge you to help us achieve our mission and make your state a Simon state, where NO child is denied parental requested life sustaining treatment for ANY reason!  Because, you never know when an injury or illness will put your own child or grandchild in the same medically vulnerable position as those with birth defects or genetic abnormalities, and you will discover that the medical community does not see his/her value the way you do.

Read Simon’s Story!

Sheryl Crosier was inspired to write the story of her son in I Am Not a Syndrome – My Name is Simon, published by All Star Press.  Order today direct from the publisher or on Amazon in print or Kindle formats.

I Am Not a Syndome

The Story of the Mixed-up Concert Tickets and a Boy Named Abraham

This was the third time my wife and I were attending the King And Country’s Little Drummer Boy concert, but for the first time, we were bringing the whole family.  I had five mobile tickets to Amalie Arena in Tampa, Florida for the Friday night showing on December 9, or so I thought.  After fighting horrible Friday night traffic heading into Tampa, we arrived, along with a large crowd, at the same arena where the Tampa Bay Lightning play.  We navigated our way though the heavy security line, got the green light, and headed to another line to show our tickets to the bar code scanner.  That’s when our problems started.  My mobile tickets would not work, and we were not allowed to enter.

Leaving the family behind, I headed back the way I came, down the stairs outside the arena to the Ticket Office on the first floor.  Finally, the problem was discovered.  I had purchased five tickets to Amway Center in Orlando, Florida for Saturday night.  Going to that was not an option for me, so I purchased five new tickets to the show we were trying to get into.  Worse seats in the upper deck at a similar price to my seats in 109.

I was not happy.  In the past this would have ruined my night, but I was determined to not let that happen.  We were going to enjoy the show, ‘like it or not!’  Cast your cares to the Lord, right?

Smallbone Joel and Luke
Joel Smallbone, Luke Smallbone on stage for Fox & Friends All American Summer Concert Series with FOR KING & COUNTRY, Outside FOX Studios in Manhattan, New York, NY June 19, 2015. Photo By: Derek Storm/Everett Collection

As usual, the show was great.  We headed home after a late night and put the kids to bed.  I quickly posted the tickets for sale online, knowing that getting help from TicketMaster was unlikely.  There was a small window of opportunity to sell the Orlando tickets, and I was not very hopeful I could get my money back.

I sold two of the tickets by late morning on Saturday.  While attending the local Christmas parade, I was learning how to transfer the tickets via the TicketMaster app.  I was also searching all over the app trying to get a hold of someone at the company to explain my dilemma, hoping that a sympathetic ear would lead to an easy refund.  I finally got a hold of someone via the chat and was told that the only thing that could be done was an exchange…for the same event!  Thanks for nothing.

Around 2 pm, just hours before show time, I received another text from an interested buyer.  They were interested in possibly all three tickets.  I convinced them that I was not a scammer, and I was able to unload the remainder of the concert tickets.  Happy to get my money back, I transferred the tickets to this couple.

This nice couple from the Orlando area explained to me that they were watching holiday movies on Friday night and the wife, on a whim, just happened to check if one of her favorite bands for King And Country was ever coming to their area.  They were, the next night!

A Boy Named Abraham

Sunday morning I was greeted by an ecstatic text from the couple that purchased the remaining three tickets.

“This concert is insane,” began the conversation.  “My wife is from Mexico and we sponsored a five-year-old boy named Abraham!”

At their concerts Joel and Luke Smallbone of for King And Country tell the story of how their large family immigrated from Australia with little money on the promise of their Dad’s job in America.  But, he soon lost that job and the Smallbone family was left destitute.  As a struggling family they were helped out in so many ways, sometimes by people they didn’t even know.  Today, the talented artists spend part of every concert trying to gain sponsors for Compassion International, a non-profit that does amazing work in developing countries.

As I get older, I find that I make more mistakes in areas where I would not have in the past.  One of these mistakes was purchasing five concert events for an event in the wrong city.  It could have ruined my night, but it didn’t.  It led to a boy named Abraham obtaining a sponsorship from a family in America.  Through Compassion International, Abraham can now attend classes, overcome illiteracy, learn about Jesus, and gain many benefits for his entire family.

What seemed like a very costly and frustrating mistake at the time led to a great ending.

Romans 8 28 all things

 

 

 

 

 

 

 

 

 

Faith Action for Today – Do Nothing?

“Peace Be Still.” Those are the words I speak to myself when I am feeling anxious, rushed, or simply harried.

Mornings With Jesus is excellent, daily devotional put out by Guideposts. Writer Jeannie Blackmer penned a short little morning devotion in which she explained her spiritual process:

  • Pause
  • Focus
  • Praise

When life gets hectic, she pauses. She turns her attention (her focus) to Jesus. Then, she praises Him for a blessing her life. What a simple process, but one that can be life changing.

So often life is crazy.  We get caught up in the rat race. God knew that we would all do this which is why he created the Sabbath, a day that we are all supposed to stop what we are doing and focus on him. But how many of us do that?

“The Lord will fight for you. You only need to be still”  Exodus 14:14

When we are struggling with something in life, sometimes the best action is to do nothing.  That’s right, take no physical action.  Instead, turn the problem over to God.  Surrender that problem to Him and say, “I can’t do this Lord.  I’ve tried everything.  I put it in your hands.”  Yes, be still.

“You will not even need to fight. Take your positions; then stand still and watch the Lord’s victory.” ~ 2 Chronicles 20:17

Now, don’t get me wrong.  If we lost our job and are out of work, we can’t just sit home, binging on Netflix and think some job is going to fall on into lap.  Instead we probably need to brush up our resume.  God admonishes the lazy.

But for many problems, God instructs us to be still.  He instructs us to have faith.  Having faith oftentimes requires us to turn our struggles over to Him and “rest” assured in His strength that He will handle it.

Give it a try sometime soon, and see if His way is better than yours.

 

An AllStarPress Publication – Flight 3272

Flight3272Have you read: “Flight 3272: January 9, 1997 The Day My Life Changed, but God Brought Me Through”

Author Vanessa Davis tells of the true story of losing her husband, Geoffrey, on their 15th wedding anniversary in the only commercial airline crash of 1997.

Her life could have resulted in anger and defeat, but instead she explains how she overcame her tremendous grief to a life of triumph. This is her inspiring story.  Read it today in e-book form.

Today’s Action Item – Do This to Break Bad Habits

Personal growth expert Joe Martin penned a great piece for Tony Dungy’s All Pro Dad that discusses how we can break the pattern of bad behavior.  We all have a bad habit or two…or three, and there are some effective strategies for fixing these flaws.

Martin writes, “As a mentor, coach, and certified builder of men, the #1 question I get asked by men is, ‘Dr. Joe, how do I stop doing ____________?’

I’ll let you fill in the blank, because the answer can vary from an addiction to watching porn to habitually getting angry. Whatever the behavior is, many men have hurts, habits, and hang-ups they’d do almost anything to stop doing; but they just don’t know how. So, as a recovering porn and sex addict (14 years sober), I tell them the secret to experiencing a behavior change. In order to stop bad behavior you simply need to do this:

Focus on the DO’s and not on the DON’Ts…if you focus on doing the DO’s, you automatically, by subtraction, will have less time to do the DON’Ts…”

Do This to Break Bad Habits – Read the rest of Martin’s article

Today’s Action Item – Beat the Winter Blues

One of the things that happens when we feel the blues, is that we lose our inspiration.  We lose our motivation to get things done.  Fast Company put out a great recent article with four steps to overcoming the ‘winter blues.’  The one we really like is the 15-minute project.  Set aside 15 minutes and complete a small task.  Complete a couple of 15-minute tasks, and would be ready for bigger projects.

“When the last thing you want to do on a cold winter morning is draft the PowerPoint presentation for Thursday’s product review meeting, turn to your 15-minute list.

A 15-minute list is a list of tasks that you can do in 15 minutes or less. For example, call and schedule your dog’s annual check-up at the vet, prepare an agenda for your meeting with your direct report, or brainstorm topics for the monthly newsletter. These are easy, quick tasks that you can complete with minimum effort and brainpower.

As you quickly cross items off your 15-minute list, it jump-starts your mojo and productivity. Feeling the warm glow of getting things done, you are now ready to move onto the product review meeting PowerPoint.”   More from Fast Company

Today’s Faith Item – Make Real Friends

Social media, we love it but we can also hate it.  It’s a blessing in that we can stay connected with old friends and relatives that we would otherwise probably not communicate with.  We can quickly and easily reach out to people.  Through social media we can convey a message to a large group of people in one fell swoop.

Unfortunately, the downside of social media sites like Facebook, Twitter, Snapchat, etc. can be very dark.  A report from the Survey Center on American Life just found that the percentage of people, especially men, who have no real friends has fallen to shockingly low numbers.

As author and Dr. Kaufman reported, back in 1990 only 3 percent of men reported having no close friends.  That figure has now risen 5-fold to 15 percent, or almost one in six.   No close friends.  Not one.

Social media certainly isn’t all to blame for this rise.  There are plenty of other factors one can point to, including the sharp fall in church attendance. When you are not part of a community, it’s hard to make close friends.  Many people reluctantly attend church or reluctantly join a small group, but then they end up making great friends in the process.

It’s time to back off on the time sink known as social media.  If you are lacking in this area, decide today to invest your time in meeting real people and making real friends.  It will be worth it.

HAVE YOU READ?

Goodnight Boone by Yogi Collins

This is a children’s story focused around the popular town of Boone, North Carolina in the nook of the Blue Ridge Mountains.  Share this wonderful children’s book about one of the most beautiful areas on the country.

I Am Not a Syndrome – My Name is Simon

This is the gripping and moving story of a baby diagnosed with Trisomy 18, a genetic disorder in which a person has a third copy of material from chromosome 18.  “I Am Not a Syndrome – My Name is Simon” by Trisomy mom Sheryl Crosier details the struggle of her son Simon from the early stages of pregnancy to his life here on earth for 88 1/2 days…  read on about Simon.

 

Today’s Action Item – Are You Struggling? Evaluate Yourself

Create a listThe American Psychiatric Association has listed the following symptoms to take note of:

Feel sad, persistently, over several days.
Losing interest in activities that you once liked.
A sudden change in your appetite, coupled with weight gain or weight loss.
Difficulty sleeping.
Low energy and persistent fatigue.
Feelings of guilt or worthlessness.
Recurring purposeless physical activity (like nail biting, hand-wringing).
Increased difficulty when making decisions or solving problems.
Thoughts of death or suicide.

Be sure to be on watch for these symptoms and if they occur, it’s important to take action.  For starters, what are you doing throughout the day or week that may be destructive behavior.  Are you letting negative self-talk take hold in your heart?  Are you endlessly scrolling on Facebook, Instagram, Twitter or the social media site of choice?  Are you constantly comparing yourself to others?

It’s time to read an dive into God’s Word daily and start to apply the life-giving principles.

Whatever the issue, fix it.  If you don’t see a noticeable difference quickly, then seek professional help.

Books That Change Lives on Sale During Rare Disease Month

February 2021 is Rare Disease Month

Two Amazing Books on Sale 

Diagnosis_Rare_DiseaseOne of the main objectives of Rare Disease Day is to bring public awareness of rare diseases to both policy makers and the general public.  Rare Disease Day is every February 28th and the month of February is devoted to raising this public awareness.

In honor of Rare Disease Day during February, Denise Crompton’s “Diagnosis: Rare Disease” and Sheryl Crosier’s “I Am Not a Syndrome – My Name is Simon” are on sale with publisher All Star Press – Books That Change Lives.

Crompton’s amazing book offers a compelling look at 13 families who received the diagnosis no parents ever wants to hear.  Diagnosis: Rare Disease” provides a heartbreaking exposé of what life is like for families that have a member with a rare disease. Crompton details the journey of each family, including her own, who has one or more children with a rare disease called Mucolipidosis.

The stories wade through the erratic diagnosis process, medical muck-ups, endless pain, a plethora of medical appliances and home modifications, special education, multiple hospitalizations and surgeries, unrelenting stress and the ever-present fear of death.

“Diagnosis” is a must-read for medical professionals and front-line workers who wish to learn how to communicate with families in these difficult situations.  Families dealing with a rare disease will recognize themselves in this book that is destined to be a classic in its field.

February 2021 Sale

“Diagnosis: Rare Disease” is on sale this month only for the discounted price of $3.49 (normally $4.97) in the Amazon Kindle Store.  Order the paperback version today for only $15.97 $12.97 plus s/h.

A portion of proceeds from your purchase go to fund scientific research for cures!

 On Sale this month only $12.97 plus s/h   View Cart

 

I Am Not a Syndome“I Am Not a Syndrome – My Name is Simon”

Simon Dominic Crosier was born on September 7, 2010, in St. Louis, Missouri. He was diagnosed with Trisomy 18, and lived for 3 memorable months before passing away in December 2010. Despite his disabilities, Simon had a huge impact on all who came into contact with him. Simon’s big, expressive eyes communicated a wisdom that transcended his innocence.

The book is about Simon’s short and meaningful life, his family and his wonderful caregivers. But more importantly, this story documents the Crosier family’s battle to advocate for their precious son. They had to overcome challenges put in their way by the medical community and even extended family members who never valued Simon’s fragile existence.  The hope is that this story will help motivate health-care professionals and anyone else that reads this account.

“We want them to understand that special-needs children are God’s gift to us all,” explains Sheryl. “Their lives possess inherent dignity and value, and they deserve the best care.”

Simon’s book is on sale this month only for the discounted price of $2.99 (normally $3.97) in the Amazon Kindle store.

Order the paperback version today for only $11.97 $9.97 plus s/h.

    View Cart

 

DIAGNOSIS – RARE DISEASE

“Destined to Be a Classic…”

“Regarding the topic of Diagnosis: Rare Disease, Denise Crompton amply demonstrates two of her important assets: one is the personal experience with ML III in her own daughter and two, her manifest ability to widen the subject and to bring a streamlined report on a number of other patients and families with either ML II or ML III. The book is [destined] to become a classic in the still little known world of very rare or orphan hereditary disorders.” ~ JG Leroy MD. PhD, Professor & Chairman Emeritus,  Univ. Hosp. & Univ. Ghent

God’s Unending Faithfulness

Worship praise at sunsetCheck out the sunrise and let it be a reminder that God’s mercies begin fresh every morning.

“The faithful love of the Lord never ends! His mercies never cease. Great is his faithfulness; his mercies begin afresh each morning.” ~ Lamentations 3:22-23

Let’s make a point to wake up early enough one morning, spend some quiet time and appreciate the beauty of God’s creation.

It will start your day off on the right foot.

 

HAVE YOU READ?

Goodnight Boone by Yogi Collins

This is a children’s story focused around the popular town of Boone, North Carolina in the nook of the Blue Ridge Mountains.  Share this wonderful children’s book about one of the most beautiful areas on the country.

 

Faith Action Item for the Workplace

Girl happy on laptop workColossians 3:23 tells us: “Work willingly at whatever you do, as though you were working for the Lord rather than for people”

If you believe Colossians 3:23 and put those instructions into practice, wouldn’t that perspective change how you approach your job, the people you interact with at work, and your attitude towards your boss?

Faith in the workplace can be demonstrated when we follow God’s Word and act on it each day. Let’s put our efforts into working for the Lord and not for man.   Honor your boss and your employer by doing your job well, each and every.  More importantly, you’ll be honoring God.

Give this a try at your workplace over the next week and see how things change.

HAVE YOU READ?

I Am Not a Syndrome – My Name is Simon

This is the gripping and moving story of a baby diagnosed with Trisomy 18, a genetic disorder in which a person has a third copy of material from chromosome 18.  “I Am Not a Syndrome – My Name is Simon” by Trisomy mom Sheryl Crosier details the struggle of her son Simon from the early stages of pregnancy to his life here on earth for 88 1/2 days…  read on about Simon.