Tag Archives: holidays

The Best Holiday Gift

The Children’s Organ Transplant Association is an organization to which we have guided many of our donors over the last several years. Last week, they provided us with a beautiful holiday story about one of the children that donor funds helped. In the spirit of the season, I thought it appropriate to share here.

-Sara

During a season filled with lists and wishes, the holiday gift one Utah couple hopes for is one often taken for granted: a healthy family.  For this family, one wish has already been granted.  Now they wait for the ultimate gift … the gift of life.

Last November, Brian and Emily Hoopes received a precious gift in the form of a long-awaited adoption.  Their story began on Halloween 2008 when Baby Patrick was born in Michigan.  The young Salt Lake City area couple adopted Patrick when he was just one-week-old, bringing him home to Utah a month later.  From the outset of the adoption process, Brian and Emily knew Patrick was a very sick infant.  They were told the baby only had a few centimeters of small intestine and until he could get an intestinal transplant, Patrick would require constant medical attention.

“Beyond knowing he would need lots of medical care we also knew Patrick’s life had been a series of miracles up until that point. We hoped those miracles would continue and we decided to forge ahead with hope, despite an uncertain future,” said Emily.

Knowing the road ahead would be rocky given Patrick’s diagnosis of short gut syndrome, Brian and Emily joyfully initiated the adoption process and returned to Utah to their large network of family, neighbors and church friends.  Their network of acquaintances expanded rapidly to include Patrick’s medical team of gastroenterologists, surgeons, nurses, pharmacists, dieticians, developmental specialists and many more medical professionals.  This couple’s dedication and commitment to a tiny infant remained unwavering even as they discovered the harsh realities that laid ahead for each of them. 

The specialists at Primary Children’s Hospital in Salt Lake City, Utah, told Emily and Brian they would need to go to Seattle Children’s Hospital, an 840-mile trip, to further investigate the possibility of a life-saving small bowel transplant.  They made their first trip to Seattle in early 2009.  That trip was successful and Patrick was listed for a small bowel transplant. That’s when the waiting began. 

Just to maintain Patrick’s health while he waits for his transplant, the Hoopes’ pay co-pays for every doctor and therapist visit, and for every trip to the hospital emergency department in Salt Lake City.  Sometimes Patrick is in the doctor’s office more than once each week.  There are also co-pays for his medications; deductibles, and the costs of living at a hospital for a week or more at a time.  According to Emily and Brian, the Hoopes family has had to tighten their belt because Emily’s current full-time job is taking care of Patrick.

Intestinal transplants are a fairly new procedure.  With Patrick being listed for transplant at Seattle Children’s, Emily and Patrick need to travel to Seattle every three months for evaluations.  Each visit involves airfare and food and lodging for at least a couple days.  They also pay charges associated with seeing doctors outside of their insurance network.  When the transplant call does come and they need to get to Seattle quickly, Emily and Brian may need to charter a $10,000 flight to get Patrick to the hospital within the narrow time frame allowed by the surgical team.

It became very apparent, very quickly, that Brian and Emily Hoopes needed help.  Even though the Hoopes’ have health insurance coverage, they soon realized that regardless of how ‘good’ their insurance is, they are facing a huge financial burden — in addition to the stress of Patrick’s medical care they face on a daily basis.  In the midst of these difficult days, Brian and Emily heard about the Children’s Organ Transplant Association (COTA). 

“With the amazing assistance that COTA provided, we were able to pull together a group of friends and family who are working together to raise funds for transplant-related expenses, and to raise awareness of the transplant journey our family was facing,” said Emily.  Almost immediately, Emily became a regular contributor to Patrick’s website journal at www.COTAforPatrickH.com.  And, just as quickly, bloggers got online and started reading, and responding to, this mother’s riveting words of gratitude and hope.

After Patrick’s transplant, he and Emily will need to stay near the hospital in Seattle for about six months.  This family will split Brian’s income across two households in two states.  Undoubtedly, their out-of-pocket insurance costs will skyrocket and they will have co-pays for bi-weekly biopsies; for anti-rejection medications, and for IV nutrition, feeding therapy and home nursing. 

“When I consider the price of Patrick’s transplant journey, it is overwhelming.  However, COTA has given us hope, making it seem that one more miracle is possible,” said Emily.

Emily continued, “We have witnessed many little miracles since we found COTA.  Family, friends and neighbors have come together in amazing ways.  Strangers in our community have reached out to us.  Every little miracle gives us hope that a bigger miracle — a transplant — is in our future.  We’ve always considered Patrick’s life a gift.  We feel privileged to be his parents.  Some may think we gave our baby a gift by adopting him, but the reality is that he is giving us the ultimate gift by being our son.” 

The Hoopes family is getting ready for the holidays.  They are grateful for the ongoing support their COTA team continues to provide; they are grateful for their COTA website Journal readers and Guestbook visitors, and mostly, they are grateful for the selfless gift an anonymous family will soon give to Patrick … the gift of life. 

Truly the best holiday gift that can be given.

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The Littlest of These

Last April, after attending a business function downtown, I was stopped by a woman as I approached my car. She was tousled and a bit unkempt, though clean. Strapped to her chest was an infant.

April weather here is incredibly unpredictable and on that day there were snow fluries in the air. She looked cold and desperate as she explained her situation. she asked for a few dollars to help her find shelter and food for her and her baby that night while she waited for her name to rise to the top of an affordable housing waiting list. Her baby slept peacefully on – unaware of his circumstances.

I ached to give her more than I had – a few dollars and a clean fleece blanket from my car’s emergency kit – yet she received them as if I had given her far more. Tears misted both of our eyes. I returned home that day deeply changed.

That incident has stayed with me the last seven months, especially since I gave birth to my second child in August. As the weather begins to turn cold again, I find my thoughts frequently turning to that young woman – so desperate to provide for her baby that a few dollar bills and a blanket were received as if they were life’s grandest treasures. I have since learned that with the economic turmoil of the last year, shelters, food banks and other providers of basic necessities are in dire need of supplies for infants and young children – formula, diapers, wipes, blankets and the like. As a group, babies are among the most overlooked by those donating items to emergency shelters and clinics – and yet they are among the most vulnerable, especially during the harsh winter months.

As a result of last spring’s experience,  my husband and I have decided this holiday season to provide some much-needed necessities to the local March of Dime’s Teddy Bear Den – a community based prenatal health program for low-income pregnant women – in lieu of gifts to family members. I cannot fathom the hollow ache that must fill one’s soul when the necessities are beyond one’s grasp.  I don’t want to have to meet another mother and her baby on a snowy afternoon with nothing to eat and nowhere to go.

As I put my children down to bed tonight – in a warm home, with their bellies full – I am thinking again of the woman and the baby who are wrapped up somewhere in my purple fleece blanket. This year, my Thanksgiving holiday is dedicated to them and others like them – may this winter bring better fortunes, a warm place to sleep and enough food to not have to put your little one to bed hungry.

If you have a warm place to sleep and enough food to satiate your hunger during this season of giving, count your blessings and join me in sharing what extra you might have with the littlest of those among us.

-Sara Brueck Nichols

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What You Give Away

This past Friday I had the pleasure of attending an event where Amy Grant and Vince Gill received the Jack C. Massey Leadership Award for their substantial efforts in assisting the work of the Mental Health Association of Middle Tennessee.

The evening was as emotional a gathering as I think I have ever attended. The reason being, as is often the case when people give so deeply, there was a personal connection for Amy and Vince that was beautifully conveyed.

Each of them have had experiences with mental illness in their family circles that they were generous enough to share. And they are not the only ones. According to the National Institutes of Health, An estimated 26.2 percent of Americans ages 18 and older — about one in four adults — suffer from a diagnosable mental disorder in a given year. The holidays can be the toughest time of year for families who struggle with mental health issues, and it seems appropriate to comment.

I have always thought that songwriters must experience some outlet or release in expressing themselves in lyric and song. I can see that when it comes to Amy and Vince, this is indeed the case.  Each sang a couple of songs that were even more meaningful when the “back story” was revealed. One example (or maybe two):

Vince sang a beautiful song entitled “Bread and Water” chronicling the last hours of a homeless man. Vince said the song was inspired by his brother, who followed a downward trajectory after a near fatal car wreck and months in a coma, but according to Vince, “possessed more character than anyone he has ever known.”

He then revealed a great deal about himself with a song entitled “What You Give Away.” I must tell you this song takes on an entirely different emotional level when delivered in that beautiful tenor voice, but the lyrics are worth a visit regardless of your religious affiliations or lack thereof:

You read the business page
See how you did today
You live up on the hill
You’ve got a view that kills
Never wonder why

After you’ve counted everything you saved
Do you ever hit your knees and pray?
You know there’s gonna be a judgment day
So what will you say?

[Chorus:]
No matter what you make
All that you can take
Is what you give away
What you give away

There’s people on the street
Ain’t got enough to eat
You just shake your head
The measure of a man is one who lends a hand
That’s what my father said

No matter what you make
All that you can take
Is what you give away

A timely message as we approach the season of giving. As you rush about preparing for seasonal observances, be aware of those around who may be struggling. If you sense someone may need help, be the one to help. There are resources all around. You may want to check the website of your state or local mental health department, or here are a couple of suggested sources for you or a loved one, neighbor or co-worker, you can get information at:

The Mayo Clinic

National Mental Health Association

For highlights of the evening I would encourage you to visit TheLostLyrics.com and share in the stories.

-Rick B. Larsen

 

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Raising Patriotic Children

Saturday, the Statue of Liberty’s crown will be open to visitors for the first time since shortly after the attacks on 9/11. When I heard the news, I nearly leapt for joy. It doesn’t mean I’ll be rushing back – one trip up the winding, narrow staircase only to be smashed in a swaying crown (it was windy that day) with 20 other people was enough for this closterphobic history buff – but it made me happy to think others will get that same opportunity again.

The news made me think about Independence Day in general. I’m currently raising a toddler, and it’s important to me that she recognize the nation’s birthday as more than just fireworks, cookouts and holiday weekends. It was while in this mindset that I stumbled across an excellent article by a child psychologist at The Children’s Medical Center of Dayton on teaching children patriotism. Dr. Ramey states:

Educating children about patriotism is really teaching them to act as responsible citizens. This is more than simply reciting the state capitals or learning how to vote. It’s about teaching them to think, question, and act responsibly.

One of the greatest things we can do for our children and the children in our communities is to teach them respect, appreciation and humility … as we live among some of the most turbulent economic and political times the world has seen in decades, how much could be solved by raising a generation more mindful of others, more respectful of people, places and things and more aware of those around them?

Dr. Ramey also gives some great pointers on raising children to be patriotic, which, in the spirit of this weekend’s holiday and our passion for children at Operation Kids, I share with you:

  • Stay informed and talk to your children about current events, politics, economics, history and what democracy means.
  • Take time to reflect – holidays like Independence Day, Memorial Day, Labor Day, Veteran’s Day and others are more than just about parades, time off work and family barbeques. Take time to pause, reflect and learn more about what events and sacrifices led to these holidays.
  • Travel – either virtually or in person. Explore new places, new cultures and the historical sites that may be lingering in your own backyard.
  • Discuss dissent. Don’t gloss over the less-than-perfect parts of our history as a nation – discuss them, encourage children to be even better than the generation that went before them.

Dr. Ramey ends with a profound statement:

Let’s raise patriotic children who love this country for what we have done and who we are becoming, while still mindful of our long journey in translating our idealistic principles into practice.

As you set out for a road trip this holiday weekend, or gather for a family BBQ or a neighborhood fireworks viewing, I remind you to take a few minutes to share with the children around you why this, of all holidays, matters and what they can do to ensure we all continue to enjoy life, liberty and the pursuit of happiness for generations to come.

Happy 4th of July from all of us at Operation Kids.

-Sara

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Investing in Life

This holiday season is going to be very different for a lot of people, given the state of the economy. Layoffs, uncertainty and tight credit markets. Every day seems to bring more bad news. Today, we learned that the unemployment rate is skyrocketing and more jobs were lost last month than any time in the last 34 years.

Many families, mine included, are looking for ways to make things a little brighter this year for someone less fortunate. But how do you know who to help? Where does your money make the most difference? I’d like to make a suggestion.

The Christmas Box Lifestart Initiative is a program that we’ve endorsed for their work to improve the lives of children and teens whose lives have been marred by abuse or neglect. Earlier this week,I attended a monthly meeting held to discuss the progress of the Lifestart program. We discussed good news – donations continue to pour in and more states are clamoring to receive Lifestart kits for their youth aging out of foster care, desperate to seek help for the youth who have no one else to champion them.

One of those states is Ohio. The numbers are astounding. 1,300 youth EACH YEAR age out of the system in Ohio alone.

1,300 youth who have to face life on their own, with nothing.

1,300 youth with nothing. No family support. Few skills. No basic necessities. And a bleak prospect for the future.

1,300 doesn’t sound like a lot, until you realize that is one state. In order to provide a Lifestart kit to every youth aging out of the system in just Ohio, it would require funds nearing $130,000. And there are many other states besides Ohio where the Lifestart initiative is desperately needed. And thousands of youth.

Don’t let all those zeroes scare you.

If every reader of this blog this month donated $25 to $100, together we could reach that number.*  

The holidays this year might look a little bleaker than in years past, but it doesn’t take much to light the life of someone who doesn’t have much. The$25 or $100 you donate doesn’t just feed someone a single meal or provide a few day’s respite – it is an investment in someone’s future. It provides sheets, blankets, dishes, silverware and other bare necessities we take for granted – giving the youth the foundation they need to pursue their dreams and goals.

This year, as the winter grows colder and the economic challenges keep coming, let each of us remember that there are millions of people – strangers and loved ones – who are worse off.

And let us be generous and grateful.

-Sara

*In appreciation, Operation Kids will match any donation made toward the Lifestart program, dollar-for-dollar.

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