Kaylea Hutson's Blog, page 34

Hope

Source: http://www.sxc.hu/photo/1136764 Once you choose hope, anything's possible.  ~Christopher Reeve
"For I know the plans I have for you," says the Lord.
"They are plans for good and not for disaster,
to give you a future and a hope." - Jeremiah 29:11 (NLT)
Judging by the comments today on the news, Facebook and more,
lots of people were hoping they would win the Mega Millions lottery. 
While it's fun to purchase a ticket (or two), let's face it. Our hope doesn't come from a series of numbers. If we truly believe, then our hope comes from God.
The rest is just sprinkles on the cupcake of life.
It was  kinda fun to dream with a few friends
about all of the good things we could do with those mega millions!

Saying Goodbye to Emma

Photo captured from Emma's mom's blog was taken during the Make A Wish Trip.Emma, the sweet girl in the pink, is now at peace. Her battle with PKAN is over. In a happier time, I was blessed to capture a moment in her life, when Emma and Alex were given the gift of a trip to Disney by the Make A Wish foundation.

Their story, which originally appeared in the January 27, 2010 issue of the Siloam Sprigns Herald Leader, is reprinted below. 

Emma, I hope heaven is full of pink shiny things and that Mr. Bill (a mutual friend who passed away a time ago) was there to meet you with lots of balloon animals and hugs.

May God give those of us left behind peace to continue on our own journey.

And may God give extra grace and mercy to your parents and to Alex. 

Until we meet again.

Florida bound
Make-A-Wish helps dreams come true for 2 local girls
By Kaylea Hutson Special to the Herald-Leader
Wednesday, January 27, 2010

SILOAM SPRINGS — Two Siloam Springs girls are learning this week that sometimes, wishes really do come true.

Alex and Emma Harris, along with their parents, Drew and Mandy, left Sunday for a 12-day trip to Florida, thanks to the Make-AWish Foundation of the Mid South.

The girls are receiving two separate, but complimentary wishes, through the foundation. Emma wished to meet Mickey Mouse, while Alex asked to swim with dolphins.

For Emma's trip, the family will stay at "Give Kids the World Village," and receive passes to the Magic Kingdom, Epcot, MGM Studios, Universal Studios, Animal Kingdom and SeaWorld.

During Alex's wish, the family will stay at the Renaissance Resort. Alex will get to swim with dolphins at Discovery Cove and receive a VIP tour of SeaWorld, as well as spend more time at the Disney parks.

Drew, a staff sergeant in the U.S. Army, currently deployed stateside at Ft. Sill, Okla., was given leave by the military for the trip.

It was Drew, who first contacted Make-A-Wish, after his girls were diagnosed last year with Pantothenate Kinase-Associated Neurodegeneration or PKAN, a rare genetic disorder that allows for the accumulation of iron in a person's brain.

PKAN causes the girls to exhibit many of the symptoms similar to Parkinson's disease, including a rigidity of muscles, tremors and a lack of coordination. It also affects a person's cognitive and developmental abilities.

One to three individuals for every one million births are diagnosed with PKAN. Alex and Emma are the first diagnosed cases of the disease at Children's Mercy in Kansas City.

Most people with PKAN only live into their 20s or 30s. Individuals, like Alex, who present symptoms early in life, often progress with the disease at a faster rate.

"We wanted to do all we could while we were able, and they could enjoy it," Mandy Harris said.

When volunteer "wish granters" from Make a Wish came to discuss possible wishes with the girls, Harris said she initially thought it would be one wish, for both girls.

"They made it clear that each got their own wish, and they didn't have to share it and they didn't have to agree on a wish," Harris said. "We didn't have to try to figure out how to make the wishes work together."

Initially, Harris joked, 4-year-old Emma wanted to "go shopping." Later, she said she wanted to "see Mickey Mouse" and be a princess.

Harris thought Alex would want to meet Hannah Montana, but the 7-year-old asked to "go swimming with dolphins," because she wants to give a dolphin a kiss. Alex also wants to see Cinderella and give Goofy a hug.

Because crowds sometimes overwhelm Alex, who now spends most of her time away from home in a wheelchair, Harris said the Make-A-Wish volunteers planned the trip for January - a slow season in Orlando.

The Harris' hopes the trip will allow their daughters to feel "special" for a good reason and take a break from the worries of therapy, medical treatment, daddy being in the Army and life in general.

"They will get to do fun things just because they are Alex and Emma," Harris said.

Finding a diagnosis
Harris said they knew that something was different about Alex, from the moment of her birth.

Initially, doctors at Arkansas Children's Hospital suspected Alex was not hitting normal childhood milestones because she was born with clubbed feet and hip dysplasia. Doctors believed she would begin to develop normally once corrective surgery was completed.

The possible diagnosis of an unknown, but genetic disease came when Alex was 24 months old. At that time, Mandy was 6-months pregnant with Emma.

Initially, doctors thought Emma was disease free, but after a year, she began to develop symptoms similar to her sister.

When Alex was 4-1/2, the Harris' decided it was time for a medical "fresh start" and made an appointment for Alex with doctors at Children's Mercy in Kansas City.

For two years, doctors continued testing Alex, trying to determine what disease caused her symptoms.

In February 2009, Alex's case was referred to Dr. Jean-Baptiste Le Pichon, a child neurology specialist at Children's Mercy.

After extensive testing, which again, ruled out all basic genetic diseases, a new MRI revealed an accumulation of iron in Alex's brain. Those tests were sent for further examination, which led to the diagnosis of PKAN.

Emma, although her symptoms are not as severe as Alex, exhibits the same iron patterns in her brain and has been diagnosed with PKAN as well.

Life with PKAN
A self-defined "information junkie," Harris limits what she reads online about PKAN, for her own mental well-being.

Instead of looking ahead at the possible life expectancy of her children, Harris relies on her faith, living in the present "one moment at a time."

"My children are not defined by this, they are Alex and Emma," Harris said. "They just happen to have this disease."

The Harris' are striving to raise Alex and Emma like two, regular little girls, who like pizza, the colors pink (Emma) and purple (Alex) and ask to eat at Chili's restaurant.

The girls receive occupation, physical and speech therapy three days a week at Friendship Pediatric Clinic in Siloam Springs.

After the diagnosis, the Harris' met with a developmental child psychologist after the diagnosis, to help chart a future for her girls.

The psychologist encouraged them to develop a list of things they wished to experience and make memories with their girls, to maintain a functioning, quality of life.

At times, Harris said, she likes to remember the Abraham Lincoln quote that states, "It's not the years, in your life that count. It's the life in your years."

Home schooling has allowed Harris to tailor her daughters' learning experiences to their physical, developmental and cognitive ages, rather than chronological ages, 7 and 4-1/2.

Harris said participation in the children's ministry at Elm Springs United Methodist Church, in Elm Springs, Ark., provides her daughter with a social outlet and a network of friends.

Drew Harris will finish his second deployment since Alex was born in April. His first deployment, when Alex was an infant, was to Iraq.

With 11 years of service behind him and retirement less than 10 years away, Harris most likely will re-enlist for reserve duty. The Harris' will take a future deployment as it comes.

"There's no guarantee with life," Harris said. "We just happen to know our [years] are shorter than most, so we're enjoying the time we have."What is Make A Wish?

Founded in 1986, the Make-A-Wish Foundation of the Mid-South, grants wishes to children with life-threatening medical conditions to "enrich the human experience with hope, strength and joy."

According to information released by the Mid-South Foundation, the Make-A-Wish mission is about the life-affirming, hope-giving aspects of the wish experience. The words "terminal" or dying" are never used to refer to a wish child, nor do they emphasis a child's illness, medical treatment or death.

Alex and Emma Harris' wishes are among the 275 that the Mid-South Foundation plans to grant this year.

One of 65 chapters across the United States, the Mid-South group generally follows a fourstep process when granting a wish.

Children, between the ages of 2-1/2 and 18, who have not had a wish granted by another organization, are eligible for a wish. Medical personnel, parents or even a child can make a referral to Make-A-Wish.

Once the child's acting physician helps determine medical eligibility - a life-threatening medical condition - the child (and his/her family) meets with volunteer Wish Granters.

The Wish Granters help identify and create the child's wish. Wishes typically fall into four categories: to go (on a trip), to meet (a famous person), to be (a job/person) and to have (an item).

The average cost of a wish is $7,100. Seventy-eight cents of every dollar donated is allocated to wish-granting. Cash and in-kind contributions helps grant additional wishes.

During the wish, the Foundation covers all expenses, to give the wish kid and family a respite from the stress of dealing with the life-threatening medical condition.

For more information, call (501) 376-9474.

Hitting the pause button

I know I'm trying to write on this blog every day - by posting a quote/picture combo, writing a "deep thought" or even reviewing a book or two.

An unexpected writing opportunity dropped into my lap today. So I'm hitting the pause button on my blog tonight.

I'll resume regular ramblings (and book reviews) hopefully tomorrow....

Grief

Photo by Claudia Rose MoodyLots of friends are grieving tonight. I just don't know what to say, except I'm crying with you and praying for you.

A few random quotes I found....
Every evening I turn my worries over to God.  He's going to be up all night anyway. 
~Mary C. Crowley
May God take your worries tonight and give you peace.

Let your tears come.  Let them water your soul.
~Eileen Mayhew
Remember, tears provide healing. It's OK to cry. Even Jesus wept.

A human life is a story told by God. 
~Hans Christian Andersen
The story told by your loved ones, is amazing. I am blessed to know them - and you.

When someone you love becomes a memory, the memory becomes a treasure.
~Author Unknown
How very true. May you find a treasure richer than gold and more precious than silver. May your tears eventually turn into laughter, as the memories grow sweeter and sweeter.
May you find peace. 

Blog Tour: 88 Great Daddy Daughter Dates (Review)

Daughters. For some dads, the word "daughter" sends shivers down their spine. A bundle of ribbons and lace and a smile that could melt your heart.

Rob Teigen knows what raising a girl is like. In fact, the father of three girls has poured out his experience (with some help from his wife, Joanna) and captured 88 moments that a dad can do with his daughter to make a memory.

This book is sweet. Flipping thru the dates, I found a variety of things a dad could do with his gal to encourage conversation and interaction.

I loved one, that involved an egg timer and a 30 minute drive. In fact, I think it might even make a fun "tween time" mystery trip this summer.

The more I dived into the book, the more I thought - I need to share it with a couple of friends who have daughters. I could see them totally getting into the dates.

I also appreciated how each date also includes some questions to ask each other, and even a way to get the dad thinking about things at a deeper level.

This is a great book. On a scale of one to five, I give this book a three. It's a great resource for dads. Practical, hands-on and easy to do.

Think of this as a road map to your daughter's heart - one date at a time.

More About The Book
(From The Publishers)
Start making memories that last a lifetime

This innovative book gives dads a wide variety of fun ideas for spending quality time with their little girls. Each date tells you what to grab (any needed supplies), where to go, and how to grow together while having a blast. You'll also find Scriptures and questions for each date to get conversation flowing. From bird-watching and making paper airplanes to bowling and photo scavenger hunts, there's something for every dad and every little girl ages 6-12.

She'll be your daughter for life. But she'll only be your little girl for a while. Make the most of this special time with the help of 88 Great Daddy-Daughter Dates.

About The Authors
Joanna Teigen is the homeschooling mom of their teenage son and three younger daughters. The Teigens enjoy church, foster parenting, books, music, and laughter. They live in West Michigan.

Rob Teigen has been a publishing professional for more than fifteen years. The author of Laugh-Out-Loud Jokes for Kids (under the pseudonym Rob Elliott), Rob met his wife, Joanna, when they were students at Moody Bible Institute. The Teigens enjoy church, foster parenting, books, music, and laughter. They live in West Michigan.

Online Resources
Buy it at Amazon
Read an Excerpt Here

About Revell, The Publisher
Revell, a division of Baker Publishing Group, offers practical books that bring the Christian faith to everyday life. They publish resources from a variety of well-known brands and authors, including their partnership with MOPS (Mothers of Preschoolers) and Hungry Planet. For more information, visit www.RevellBooks.com.

Note: As a freelance journalist, I was provided a copy of this book by Revell, a division of Baker Publishing Group. This review was not influenced by a free book - just in case you (or the FTC) were worried about this detail.

Sunday Thoughts: A Beautiful Day

Woke up singing/thinking about this song today....

Friends helped me remember where I knew it from....U2....

Enjoy

Surprise

I've been working up photos today from Destination: Fort Smith.

This photo from Friday's outreach carnival is one of my favorites.

I snapped this right after Emma handed the Salvation Army rep (Terri) the Visa gift card(s) with the donations we set aside for the ministries we help during the mission trips.

We gave the Salvation Army "two" donations ($100 each) for the two different ministries we helped with this week. The first, primarily for the shelter/thrift store side of their ministry. The second, for the community outreach ministries (like the carnival we helped host at the apartment complexes.)

They (Salvation Army folks) were completely blown away by our students and the way they helped out. They also were surprised that our team not only made a donation with their service but also with funds (part of the money kids pay to go on the mission trip.)

It was a good experience. At least half of the students involved in Destination: Fort Smith were completing their first mission trip. They grew. They learned. They stepped out on faith - and they had fun.

I'm sure I'll have more as I continue to process this experience.

For now, Destination: Fort Smith is in the books.

Opens Today: October Baby (Review)

Opening this weekend is a movie with a powerful message.

October Baby.

It's a movie that emphasizes one message.

Every Life Is Beautiful.

The movie focuses on Hannah, a college student, who finds out due to a series of illnesses that she is not only adopted, but also a survivor of a failed abortion. Her illness is due to her traumatic birth.

What follows is Hannah's efforts to find herself and her birth mother, all while trying to chart a path for her future. It also includes a side story of a father who learns how to let go of the past (watching his daughter struggle for life) so he can let her sour into the future.

Watch The Trailer Here


The movie is gritty. It is authentic and it has a solid plot.

It will leave thinking about the issues of abortion.

You may find yourself not only crying at the powerful moments, but also laughing at the humor.

Directed by Andrew and Jon Erwin, the movie is supported by a variety of ministries including American Family Association, Bethany Christian Services, Care Net, Concerned Women of America, Focus on the Family, Heartbeat International, Hope for Orphans, Family Life, Fathers.com, OptionLine, Students for Life of America and The Hope Line.

Among the stories captured by the Erwins' (about the film's impact) since it was completed is the story of Shari Rigby, the actress who plays Hannah's biological mother.

You can see a portion of her story here.



Regardless of your political stance and beliefs, I think the over arching message of this movie - that EVERY life is important and beautiful - is a great thing.

I'll be honest. This is a gritty movie. It doesn't pull the punches - but the grit isn't gratuitous. It's an honest, authentic story. It's not preachy.

But I probably wouldn't show it to middle schoolers and/or younger. I think high schoolers could handle it, if there's some "debriefing time" afterwards. I'll be honest, it was a tough movie for me to process.

But, I'm glad I saw it. . If anything it made me think. It also made me consider how to minister to families who might have this issue in their family story.

On the scale of one to five, I give this movie a solid four.

Online Resource
http://everylifeisbeautiful.com/
http://octoberbabymovie.net/

Note: As a freelance journalist and as a children's pastor, I was given a chance to see this movie in a preview event. This review was not influenced by a free movie ticket - just in case you (or the FTC) were worried about this detail.

Gratitude

One of the things/people I've been blessed with this week, is getting to know Zoe - a high school student from one of the participating churches.


Zoe came on the Destination: Fort Smith trip as a "Girl Friday" - also known as a "can you do this" or "can you do that" helper.


Zoe came on the trip to help organize the "Happies" and to be our "right hand gal." She gave up three days of her spring break to help a group of younger students have a good experience.

For many of the students, this is their first mission trip.Zoe said - in passing today - how her trips like this have meant to her - and that's why she wanted to be part of this experience.

Oh, an explanation for the costume - the Salvation Army really wanted to have a "clown" type person to be at the outreach carnival tomorrow. They had been praying about it - and a costume was donated this week that would make it work.

The only question left was who would be this person.

Zoe stepped up to the challenge. She was more than willing to dress up, and be a bit silly, all for a good cause.

Tonight I'm grateful for Zoe and her willingness to come on this trip.

Her enthusiasm for life and for faith is a huge encouragement to me.

Destination: Fort Smith Has Begun

Or How I'm Spending My Spring Break .....
 Hanging out in Fort Smith, Arkansas with these kiddos. 26 kids, 11 adults, 1 youth "girl Friday" and 3 mascots (also known as the Palmer kidlets)The Destination: Fort Smith team.
 The team in their natural action...
The St. James UMC team.
Jack & Allison were the brave souls who came to see what everything is about, to help spread the word about the summer trip.
At least half of the group are taking part on their first mission experience. 
That is AWESOME.
God is good.
Tomorrow - service projects with the Salvation Army.
You can keep up with our updates here:
https://www.facebook.com/Destination.Mission