Princess Ky Background - The cutest blog on the block

Wednesday, December 28, 2011

Another Day with Jingles - Our Elf on the Shelf

And the winner of a copy of Jolene Philo's book "Different Dream Parenting" is....

****Rhonda Gable Hammons!!**** 

Rhonda, message me your mailing address and I'll get your book to you right away!!  So excited for you!  You will LOVE IT!


I know Christmas is over, but I thought it would be fun to share a few more of Jingles' hiding places.

So much fun to wake up to a new surprise each day!

Kylie's reading ability is really coming along

 Kylie is REALLY into playing the game Operation right now...So neat that Jingles knew that!!
Daddy did such a good job writing Jingles' notes for him. (Don't tell Kylie!)

Jingles is hiding - Can you find him?

Here I am!!

We were sad to see Jingles go...

We have decided as a family that because Jingles is SO BUSY helping Santa that he probably only needs to be at our house each December for 12 days vs the usual 25....seriously, 12 is MORE than enough for a game of hide and seek!  (wink wink)

Jingles, our family will give you a well-deserved break!  See you again next year!!

Tuesday, December 27, 2011

My Review of "Different Dream Parenting"

My Review of...

Once again author Jolene Philo has reached out to parents, teachers, caregivers, churches and friends of special needs children through her new book: "Different Dream Parenting". Having experienced many aspects of special needs parenting, Jolene is specifically gifted with the expertise to write with a level of compassion, knowledge and understanding that surpasses many other authors.

"Different Dream Parenting: A Practical Guide to Raising a Child with Special Needs" is an invaluable guidebook full of resources and practical advice that is easy to access, research and put into practice.

Jolene's book is a treasured collection of inspirational stories: TRUE stories of adventurers, explorers, leaders, pioneers, warriors, advocates and heroes in the special needs community. These are the personal stories of her readers- the genuine experts.

Jolene shares that many of the parents who were interviewed for her book expressed two certainties:

That "God has a purpose for their children's lives, whether or not He has revealed it, and they believe that the rest of their lives will be a constant unwrapping of that purpose as God uses their experiences to change them and uses them to change the world." (p.227)

The phrasing "constant unwrapping" beautifully summarizes all that Jolene's book encompasses. "Different Dream Parenting" embraces readers where they are in their life process and gives them the tools and information to enhance the foundations they have already put into place. The book encourages, offers support and gives readers permission to safely express their true feelings about the place they are in.

Jolene's book is a safe place in which to refresh, rejuvenate and relax while encountering a kindred spirit in the world of special needs. As a mama of a precious little girl who experiences Autism, I highly recommend this book. "Different Dream Parenting" is worth the time to read and if time is of the essence, the index in the back of the book makes the various references and topics quickly accessible and easy to find.

Jolene Philo is a credible author and "Different Dream Parenting" is a friend in a crisis, a hug in a storm, and a trusted adviser amidst the turmoil and chaos of life. "Different Dream Parenting" is truly a special book.


* To read my Introduction of Jolene click here
* To read part 1 of my interview with Jolene click here
* To read part 2 of my interview with Jolene click here
* To read Jolene Guest Blog Post click here
* For information on Jolene's recipe: Cashew Chicken, click here
* For information on Jolene's Maple-Oatmeal Scone recipe, click here


Come back tomorrow as I announce the winner who will receive Jolene's book!!

Wednesday, December 21, 2011

Christmas Scones

Today is Day 6 of my series with Jolene Philo, Author of

* To read my Introduction of Jolene click here
* To read part 1 of my interview with Jolene click here
* To read part 2 of my interview with Jolene click here
* To read Jolene Guest Blog Post click here
* For information on Jolene's recipe: Cashew Chicken, click here

Today, Jolene is sharing another of her favorite recipes.  This one would make a GREAT  Christmas morning breakfast!

Jolene shares...

One of my favorite hobbies is sampling foo-foo baked goods or gourmet main dishes and then trying to recreate them at home. So a few years ago I was a woman on a mission after tasting maple oatmeal scones at a fancy coffee chain. (For those of you who want to guess, it wasn’t Caribou Coffee or Dunn Brothers and it’s name began with “S.”)

After perfecting the recipe and enjoying the scones a few times, they slipped my mind -  like so many things do the older I get - until last weekend when a hankering for scones crept up on me. Alongside bean soup, it was a yummy winter meal. My husband commented more than once on how tasty the scones were, and gave them the coveted Hiram Seal of Approval.

They’re easy to make so give them a try and leave a comment about whether or not they receive your family’s seal of approval too.

Maple-Oatmeal Scones

1 3/4 cup flour                                               
3/4 cup old-fashioned oatmeal
2 1/2 teaspoons baking powder  
1/2 teaspoon salt

1/3 cup butter, softened                              
1 egg, beaten
1/4 cup maple syrup                                     
2 - 3 tablespoons half and half or buttermilk

Preheat oven to 425 degrees. Mix together dry ingredients. Cut in butter. Add egg, maple syrup and just enough half and half or buttermilk for the dough to form a ball. (Less liquid is better than more.) Shape dough into a circle about 1 inch thick on a greased cookie sheet. Cut circle into 12 wedges. Pull every other wedge a few inches out of the circle. Sprinkle with sugar. Bake 10 minutes. Serve hot.


As an added bonus, Jolene has generously donated a copy of her new book - just released last month: Different Dream Parenting: A Practical Guide to Raising a Child with Special Needs for me to give away to one lucky reader!

To enter the drawing to receive a FREE copy of Jolene's new book just do one or more of the following before December 22th (the original deadline was Dec 20th, but due to some complications on my part, I am extending the entry deadline):

* Comment on this blog post
* Sign up to "Follow" my blog (and leave a comment letting me know you did)

My next post will be my personal review of Jolene's book.  I am looking forward to sharing with you.

Sunday, December 18, 2011

Holiday Happiness and Home Cooking! (PLUS a giveaway!!)

I thought I would share with you a few pictures of Kylie's first visit (of 2011) with Santa.  It was a Magical Time. 

Kylie was scheduled to dance with Dance Without Limits (a ballet class for children who experience special needs) at the annual charity benefit for Blank Children's Hospital called Festival of Trees.

We were to arrive early and it was during our wait that we noticed Santa and Mrs Claus were also at the event.  Wasn't it SO NICE of them to make time in their busy schedule to help support Blank Children's Hospital?

This is the first year we have helped Kylie put together an actual Christmas List (I'll write more about that in a future post, as, of course, you KNOW we had to adapt the process!)

However, on this particular day, God really answered my prayer as, when we encountered Santa, there was no one else around - Miracle!!  This made the atmosphere and sensory level just perfect for Kylie to (with a good bit of encouragement) approach Santa.

With prompting and a very patient and kind Santa, (and mommy interpreting) Kylie was able to tell him the two things she has asked for this Christmas.

Take a look at our pics and Enjoy the Magic we experienced in those moments...

Kylie is admiring the Barbie Tree

Today is also Day 5 of my series with Jolene Philo, Author of

* To read my Introduction of Jolene click here
* To read part 1 of my interview with Jolene click here
* To read part 2 of my interview with Jolene click here
* To read Jolene Guest Blog Post click here
There are a lot of people who know Jolene as an Author, but I also want to share with you that Jolene is a FABULOUS cook!  Maybe someday we can convince her to put together a cookbook. 
I asked her if she would share a recipe that her family really loves. 
Here is her recipe for Cashew Chicken and the story behind it...
A few years ago, my daughter Anne begged me to get the recipe for Cashew Chicken from her best friend’s (Rachel’s) mom, Joni Gainer. So I did, and the dish quickly became one of our family favorites. The vegetables in the recipe provide quantity guidelines, but you can swap those listed with whatever is in season. Try green or wax beans, cabbage, cauliflower, zucchini, summer squash, grape or cherry tomatoes, different varieties of peppers, and sugar snap peas.

The last time I made this, I’d just returned from a week of travel. When I went to the cupboard, the peanut butter jar was empty, so I substituted almond butter. The cashews were gone, so I used almonds instead. Conclusion: Jolene’s Almond Chicken is tasty, too.

Joni’s Cashew Chicken

3 tablespoons soy sauce
3 tablespoons peanut butter
3 tablespoons honey
4 tablespoons sesame or peanut oil
1/2 cup cashews
1 whole chicken breast, cut into bite-sized pieces
3 cups green onions, washed, topped, and cut into one inch slices
1 cup peeled carrots, sliced into thin, one inch pieces
2 cups broccoli florets washed and cut into bite-sized pieces
3/4 cup sweet red pepper, washed, seeded, and cut into half-inch pieces
2-3 cups pea pods, washed

Sauce: Combine soy sauce, peanut butter and honey in a 1 cup measuring cup. Heat in the microwave for one minute on high. Stir until peanut butter is mostly melted. Set mixture to the side.

Turn burner on high and heat 1 tablespoon of oil in a large frying pan or wok. Add cashews and stir for one minute, until cashews begin to brown. Spoon them onto paper towels to drain. Heat another tablespoon of oil in pan. Turn burner to medium high and add chicken. Stir until meat is completely cooked and begins to brown. Spoon chicken into a bowl and set aside.

Heat last two tablespoons of oil in pan and add vegetables, one kind at a time, at one minute intervals. . Add chicken and stir until mixed. Pour sauce over all and stir until the stir fry ingredients are coated and sauce is bubbly.

Spoon mixture onto a bed of rice and sprinkle with cashews. Serve hot.


I just love the picture that Jolene sent of her Cashew Chicken.  It looks so festive with it's red and green presentation.  I can just see it sitting on a holiday table!

If you try out Jolene's recipe, please let us know!  We'd love to hear what you think!

(I can't wait to try it!!)


As an added bonus, Jolene has generously donated a copy of her new book - just released last month: Different Dream Parenting: A Practical Guide to Raising a Child with Special Needs for me to give away to one lucky reader!

To enter the drawing to receive a FREE copy of Jolene's new book just do one or more of the following before December 20th:

* Comment on this blog post
* Sign up to "Follow" my blog (and leave a comment letting me know you did)

Saturday, December 17, 2011

A Guest Blog Post by Jolene Philo, Author: Different Dream Parenting (AND A GIVE-AWAY!!)

Today is Day 4 of my series with Jolene Philo, Author of

* To read my Introduction of Jolene click here
* To read part 1 of my interview with Jolene click here
* To read part 2 of my interview with Jolene click here

In this post you will learn more about Jolene's story but also about why she chose to write her two books.

Here is Jolene, in her own words, sharing how her family members' lives were turned upside down and how she has used that experience to help meet the needs of other families.


When our beautiful newborn boy was transferred to a regional hospital, my husband and I felt lost at sea. A few hours later, we learned that our baby required immediate surgery at a university hospital 750 miles away. Without it, he would die. That news threw us overboard. We longed for someone who could come alongside and pull us out of the water. A book to chart a map through unfamiliar waters and assure us of God’s presence.

But our son was born in 1982 when pediatric medicine was a relatively new field. Families like ours were hard to find. Parenting books hadn’t been written. The internet didn’t exist. Over the next twenty years, even after the surgeries and medical procedures that corrected our son’s condition were over, my search for parenting resources yielded scant results. Eventually, I sensed God nudging me to come alongside young parents lost at sea like we had been, to create a map they could follow.

Different Dream Parenting: A Practical Guide to Raising a Child with Special Needs is that map. It’s a map for parents of kids living with medical special needs as well as conditions like Down Syndrome, juvenile diabetes, developmental delays, autism, and those facing a terminal diagnosis. It guides parents by providing tools and resources they need to become effective advocates for their kids.

The book features interviews, advice, and resources from more than fifty families and two dozen professionals. With their help, the book addresses the situations parents face every day. Things I wish someone had told me, like:

         Asking questions after diagnosis.
         Dealing with insurance companies.
         Preparing a child for a hospital stay.
         Accessing financial resources and government monies.
         Accessing special education services.
         Determining optimum level of care.
         Mobilizing volunteers at home.
         Supporting the siblings.
         Preparing a child for death.
         Planning a funeral.
         Participating in community and church events.
         Creating a special needs trust for adult children with special needs.

In addition to practical advice, Different Dream Parenting tackles spiritual questions families are often afraid to ask. Questions about:

         God’s sovereignty
         Parental guilt
         Setting and maintaining spiritual priorities
         Grieving for children living with special needs
         Grieving the death of a child
         Passing faith on to children with special needs

Thirty day prayer guides in the appendices are for parents too exhausted to form their own prayers.

I remember what it’s like to be lost at sea, thrown overboard by an unexpected diagnosis, and drowning under a flood of caregiving demands. My goal is to put Different Dream Parenting into the hands of floundering parents so they have a map and know they’re not alone. To order the book, visit and click on the “buy the book” tab.

Thanks, Amy, for this opportunity to guest blog at and tell people about Different Dream Parenting.


As an added bonus, Jolene has generously donated a copy of her new book - just released last month: Different Dream Parenting: A Practical Guide to Raising a Child with Special Needs for me to give away to one lucky reader!

To enter the drawing to receive a FREE copy of Jolene's new book just do one or more of the following before December 20th:

* Comment on this blog post
* Sign up to "Follow" my blog (and leave a comment letting me know you did)

Friday, December 16, 2011

Interview with Author: Jolene Philo -Part 2 (and a giveaway!!)

Today is day three of my series with Jolene Philo.  On day one, I had the pleasure of introducing her to you.  On day two, you were able to read the beginning of my interview with Jolene and today, I am posting the second half of that interview.

Today, there is also an opportunity to win a FREE copy of Jolene's NEW (just released) second book:

Wrap your hands around a cozy mug of something warm, get all snuggly and prepare to learn things about Jolene that will encourage and inspire you. 

Allen at about 1 month looking at the teddy bear a neighbor gave him. It look so much like the one on the Different Dream book covers that it still gives me shivers. The graphic designer didn't know about the teddy.

*Tell us about the title of your books. How did you choose them? What do you mean by "Different Dream"?
Life had a dreamlike quality when Allen was whisked away by plane to Omaha, and we spent the next few days driving cross country to get to him. That sensation didn't end during his NICU. When we brought him home, the sensation lessened but never completely went away. Sometimes, life felt like a nightmare, it was so opposite what we had imagined life with our new baby would be like. But gradually, I realized it wasn't a nightmare, just different from our original dreams for our child and our parenting experience. Fast forward 20+ years to when I was thinking about a title for the first book. Different Dream kept coming to mind, so that was the title I put on the book proposal sent to Discovery House Publishers, and it stuck. Since it was published, the title has resonated with many parents, and they often commented on it. So when it was time for book number two, I used the phrase again. It's also the title of my blog. I was pretty surprised wasn't taken already.

*How was your childhood/adulthood impacted by having a family member who experienced special needs?
In the 1960s, having a mom who worked full time and a dad who stayed home was not the norm. Still, I didn't think having a dad in a wheelchair was a big deal. Only as an adult did I realize what an extraordinary childhood my siblings and I had. We had skills unfamiliar to other kids. We could discreetly empty, rinse, and return Dad's urinal to it's carrying case. We knew how to set a table for someone with shaky hands - Dad's spoon (always a soup spoon) and fork (no knife because he couldn't cut) were on the left, a straw was in his coffee cup, and his meat had to be cut for him. My sibs and I could clean a pipe, fill and tamp down the tobacco, give the pipe to Dad, then strike a match and light his pipe as he puffed away by the time we were seven. But more than skills, we learned how inaccessible buildings could be to someone in a wheelchair. We learned how isolating Dad's disability became as he grew weaker, and we learned the blessing of friends who visited him week after week for decades.

I also learned how important it is to ask for help from friends and professionals, not just family members. That's something Mom didn't do very well, and her independence created a great deal of stress for our family. So when Allen was born, I did ask for help.

*What is your favorite chapter, quote and etc in your book?
Wow, that's a hard question. Usually, whatever chapter I'm reading is my favorite. But the story that impacted me the most came from a young mom named Brittany. Their first child was born with numerous birth anomalies. Brittany and her husband knew their baby wouldn't live long, and he spent all fifteen days of his life in neo natal intensive care. His mom and dad took their parenting duties so seriously they read the gospel of John aloud to their little boy. Brittany said, "It was something we could do." Those words are so profound and bring me to tears when I read them. Instead of becoming bitter about the parenting they couldn't do, they found something they could do. I wish I'd had that perspective when Allen was in NICU.

The feeding tube and string were put in place during emergency surgery at two months.

*What was the biggest eye opener of the writing/interviewing process.The universality of the emotions parents of kids with special needs experience and their initial assumption that those emotions are wrong or sinful had to be the biggest eye opener. Parent after parent described how they grieved and then felt guilty about their grief. Many spent months and years try to explain away or deny the trauma they experienced. Only when they identified those emotions and dealt with them were they able to move ahead.

*What did you need/desire from family/friends when you were going through your crisis situation with Allen?
What we needed and received from friends was practical support. We lived in a very small community, and I was one of three teachers in the K-8 school in town. My students' parents and other people pitched in constantly. When we brought Allen home a month after his birth, they cleaned our house, restocked the refrigerator, took care of our garden, and mowed the lawn. When we had medical appointments or hospital stays, one mom substituted at school. People sent cards and balloons and did anything we asked. They even held a fund raiser for us. And of course, I mentioned the pastor and his wife who did a Bible study with us.

We lived in South Dakota, over 12 hours away from our nearest family, but they met our needs, also. They contacted friends for us to stay with when Allen was hospitalized in Omaha. They called often, came to visit when they could, and their homes were always open to us. As as a result, though we were far from home, we knew we were not alone.
Allen after surgery
 at Children's Mercy Hospital in Kansas City.
*Over time, did the response from family/friends change? 

Our son had a rough start. He recovered from the initial surgery at birth well, but had complications at 2 months that led to 7 surgeries and countless invasive medical procedures and tests until he was three. He had another surgery at age four and a final one at age fifteen. We moved to Iowa when he was three and most people didn't know of his health issues. Many of them thought we were paranoid or overly dramatic when we tried to tell them about his medical needs. He had no behavioral or intellectual issues at all, in fact he was very bright and charming, so again people had a hard time accepting our story. In one way, that was very good because he was treated like a typical kid. But sometimes it felt very lonely as we lost the support group in the town where we lived previously. Our family was always supportive and very understanding. They never changed.

Allen at about 6 months.
Getting him to eat solid food wasn't easy!

*How did you explain your son's diagnosis to others? (especially to other children)
It rarely came up. By the time he was in school, everything was under control. If necessary, we would do a little anatomy lesson - with kids and adults - and draw a normal esophagus and explain it, then draw Allen's version and talk about it. During those years, I taught fourth grade, and one of the science chapters was about the gastrointestinal system. I always added the Allen story to that chapter, and it always grossed out my students. Since fourth graders love to be grossed out, it was a perfect fit.

*How did you handle unwelcomed attention/questions?
That was a non-issue in Allen's case.

*What were the dynamics in your family? (especially between your son and daughter)
Our son is six years older than our daughter. They are now 29 and 23 and very good friends, though the age gap made it hard for them to connect during childhood. The biggest issue in our family was Allen's post-traumatic stress disorder (caused by all those early, invasive medical procedures) that was undiagnosed for 26 years. His behavior became increasingly erratic from adolescence on and resulted in him living far away in an isolated, structured community for six years. At the end of that time, he called and asked if we would help him "fix" what was wrong. After such a long wait, God moved swiftly and miraculously. Within a week, we had a PTSD diagnosis, within another week he was in intensive treatment, and within another week he was treated, home and whole.
*How was the relationship between you and each of your children different?

This story gets to the gist of your question. Allen had excellent eye-hand coordination (he started playing trap set at age 11), so learning to drive was a piece of cake. Anne's eye-hand coordination was poor, and she needed years of practice to learn to drive well. So we never worried about Allen getting somewhere safely, but we never knew if he was going where he said he was. Anne, on the other hand, could be trusted to go where she said she was going. But we were never sure if she would get there safely.

On the other hand, if we made eye contact with either of our children, we lost fifteen minutes of our lives listening to them.

*What kind of planning ahead did you need to do to ensure your family outings had the best chance for success?
This wasn't an issue as we didn't deal with anything other than average childhood meltdowns. When Allen was little and he dealt with choking and vomiting, restaurant visits could be adventurous. We took lots of napkins and left big tips.
*In your opinion/experience what is the best way for others to lend support when you are in a crisis situation?
Stay calm and offer practical support. Think about what to do for the family instead of what to say. Take a gift card, offer to pick up the other siblings, ask what needs doing at the house. If the family is too frazzled to give answers, just think of what would help you in a similar situation and see if it needs to be done. 

*The holidays are approaching... What did your holidays look like during your crisis period?
Allen was in the hospital for his first Halloween. We went to my parents' in Iowa for his first Thanksgiving and scheduled a doctor's check up in Omaha on the Wednesday beforehand. We spent Christmas with friends in South Dakota (our first ever away from my family) because we were too tired to travel. Allen also had the chicken pox during Christmas vacation. But we were very grateful for the support of friends. That was the first year I understood the enormity of the gift of God's Son at Christmas. Isn't that true for all parents? Once they have children and love them so fiercely?

*Knowing you probably really appreciate holidays now, what traditions do you celebrate/create with your family?
Our biggest tradition is probably that we rarely celebrate Christmas on Christmas. Hiram was an ICU nurse while the kids were little and usually worked on Christmas Day. Our kids say their memory of Christmas is of waking up really early to open stockings before their dad left for work at 6:30 AM and then waiting all day long to open presents when he came home. Our extended family usually celebrates Christmas before New Year's. We are a family of cooks so we enjoy making pies (with homemade lard crust), an old family recipe for plum pudding (really a spice cake with wild plums), tapioca fruit salad (an recipe from my grandmother) , mince pie, and my mom's killer Chex mix. We have a serious gift exchange and then a free-for-all white elephant gift exchange after that. Way fun!

*Do you have any mementos from the childhood of your children? what are particularly precious to you?
I still have the tiny blood pressure cuff Allen wore in NICU. It's draped over the picture frame of his baby picture. I also have a pair of stunning cat earrings that Anne gave me when she was quite small. But my favorite mementos are the sweaters Hiram's mom made for the kids (she was amazing) and the clothes my mother sewed for them. I have those things stored in boxes in the attics. One day, I hope our grandchildren will wear and enjoy them.

*If you could go back and do it all over again knowing what you know now, what would you do differently?
I would relax more and enjoy parenting a child with special needs just as he/she is. I wouldn't worry so much about trying to get back to "normal" because there is no normal. And I would take an electric breast pump back in time. I had to pump for an entire year because Allen was allergic to anything except breast milk. The pumps in 1982 left a great deal to be desired.

*Now that your children are grown and involved in living their own lives, what are things that you really enjoy doing now that you could never have done back then.
Getting to know our kids as adults and becoming friends with them and their spouses is absolutely delightful. Apart from them, it is wonderful to have time to think and plan big writing projects. It's also fun to be able to watch movies and TV shows that are good but not appropriate for children. Most of all, I enjoy being able to go for a long walk every morning and come home to think and write for long periods of time.  

*Did you have "girlfriends" when your son was in his crisis period? How did you maintain those relationships?
Yes, I had girlfriends. Thankfully, one was my son's day care provider and others were parents of my students. So we saw each other frequently, and they were always there to listen to me. During our son's adolescent years I had several church sisters who prayed for our family faithfully and listened when I needed to unload. Now that our life is on an even keel, I have had several opportunities to give back to them as they've experienced their own crises.

*What advice do you have for those currently in the trenches?
Don't try to do everything by yourself. Ask for help, even if that means giving up having things done exactly as you want. Train other people to care for your child and let them do it so you can get away now and then. If your spouse offers to help with anything, accept the offer. If he or she doesn't do it exactly the way you like, keep your mouth shut. Whenever possible, let good enough be good enough. Require perfection only when absolutely necessary.

*Do you have any organizational tips for those of us who struggle with having enough hours in the day?
When you're cooking, make double, triple or quadruple batches and freeze the extra. That way you'll have meals for those days when there's no time to cook. Ask friends to help with things like laundry, yard work, and running kids to and fro. Hire a cleaning lady if you can or an assistant.

*How did you organize your son's medical records?
As I recall, the doctors kept them. When we moved, they gave them to us to give to his new doctor. When Allen became an adult, we got a set of them and sent them with him. I don't know what he's done with them since.

*Did you ever compare yourself to what you thought was the perfect "woman/mother" figure? (maybe a fictional character, TV mom, etc)
This will date me, but I always wanted to be as funny as Carol Burnett, as nice as Mary Tyler Moore, and as pithy as Rhoda Morgenstern. Never, ever  did I want to smile as much as Carol Brady.

*What did you decide was ok to "let go" when circumstances required it? (home cooked meals? cleaning? being involved in outside activities?)
Cleaning was and still is the first thing I am willing to let go. Thankfully, we have a wonderful cleaning lady who comes once a month. Cooking and baking are therapy to me, so I don't like to let go of that. But I do a lot of simple cooking and always have meals in the freezer. I learned early on to say no to most things and concentrate on the ones I felt God calling me to do. I say yes to things 1) I feel God has equipped me to do, 2) things I enjoy and have time to do, and 3) a few easy things that require no extra planning. I also look for ways to connect with people outside of our church family since it's hard to be salt and light otherwise. As our pastor says, there are lots of good things to do, but we need commit only to the best ones. 

*Did you ever accept philanthropy from others? what was that like for you?
A fundraiser in the South Dakota town where we lived raised $1500 for us in 1982. That money allowed us to fly rather than drive to some Omaha appointments. Other than that, our insurance was very good. So we didn't need much help.

*Were finances/paying for treatments ever an issue? how did you work through that or make decisions?
Sometimes we arranged to pay so much a month on our bills. But somehow, we always managed to pay the bills within a year of treatment.

Going down the slide after Anne's wedding in July of 2010.

*Did you ever shock your children with a silly moment?
I have been known to burst into song in their presence. My rendition of Ariel's "Ah-ah-ah-ah, ah-ah-ah-ah" from Disney's Little Mermaid is quite stunning. I know this because it always makes their eyes roll back in their heads. They were also quite surprised at how determined I was to end up with the Easy Bake Oven that was among the Christmas white elephant gifts a few years back. It was the fulfillment of a childhood wish. 

*If we could peek into your window on Christmas Eve, what would we find you doing?  What would  you have been doing 20  years ago?
This Christmas Eve will be quiet as our kids won't come home until after Christmas. We will go to Christmas Eve services at our church. I will also be praying for a dear friend who lost her husband last year on Christmas Eve. Twenty years ago, our kids were ten and four. We would have gone to Christmas Eve services and then driven around town to look at the lights. We even had a "Waa-Waa" rating system of one, two, three, or four "waas." One "waa" was a few lights outside up to "Waa-Waa-Waa-Waa" applied to houses that lit up the night sky. Such fun! We still talk about "waa-waa" houses.

*What is on your Christmas list for Santa this year?
Really, truly, a few days with our kids and their spouses and then gathering with my extended family is enough. Other than that, a year's supply of hot drinks from our local coffee shop would be nice.

*Do you have a favorite Christmas movie? The Christmas Story

*Do you have a favorite Christmas song? John Denver and the Muppets Christmas albumm

*Do you have a favorite holiday treat? Grandma Josie's tapioca fruit salad.

*Do you have a  favorite holiday appetizer? Parmesan cheese ball with Toasted Onion Crackers.

*Have you ever made a gingerbread house?
Yes, when I was a young, foolish college student with time to burn. It turned out well.

*Your Christmas wish for your readers...
That they will know Christ and his love in a new and real way.

Thank you so much to Jolene for allowing me to interview her!  I loved getting to know more about her and would love to hear more about her rather diverse acting career.  ha! ha!

As an added bonus, Jolene has generously donated a copy of her new book - just released last month: Different Dream Parenting: A Practical Guide to Raising a Child with Special Needs for me to give away to one lucky reader!

To enter the drawing to receive a FREE copy of Jolene's new book just do one or more of the following before December 20th:

* Comment on this blog post
* Sign up to "Follow" my blog (and leave a comment letting me know you did)

I hope you will check back tomorrow as I share one of Jolene's favorite recipes... It looks so yummy, I can't wait to make it!!

Also, if you get a chance, feel free to check out Jolene's blog


Thursday, December 15, 2011

Interview with Author, Jolene Philo - Part I

Jolene's Son: Baby Allen
Just a few hours after birth

Yesterday, I introduced you to Jolene Philo: my friend and the author of two amazing books.

Jolene's newest book (just released) is

A Practical Guide to Raising a Child with Special Needs.

Jolene graciously agreed to an interview and she was very open, honest and candid with her answers.  The interview will be posted in two parts so find a cozy nook to settle in and get ready to meet a lady who is having a great impact on children, parents, teachers, social workers, hospital staff, caregivers, and many countless others.


Q. What was the catalyst that made you decide to write the Different Dream books? 
I wrote Different Dream Parenting and my first book, A Different Dream for My Child, for one reason. Twenty-nine years after the birth of our son, the memories of his weeks in NICU are still fresh in my mind. I remember how alone we felt. We were 25 years old, 750 miles from home, clueless. If there’s anything I can do to help parents in similar circumstances know they are surrounded by people who care, I will do it. If I can make them understand they are God-appointed to advocate for their their children, I'll keep writing.

Q. Explain your son's diagnosis and what exactly made it life threatening.
At the time, the doctors called his birth anomaly a tracheo-esophageal fistula (TEF). These days they add "esophageal atresia" to the beginning of that, so it's alphabet soup name is EA/TEF. There are many versions, but in our son's case, his esophagus came down from the mouth several inches and formed a blind pouch. It came up from his stomach and hooked into his trachea. Many children who have EA/TEF have other birth anomalies, but Allen did not. As you can imagine, the condition requires medical care and early corrective surgery or the child dies.

NOTE: To learn more about EA/TEF click here

Q. Before your son, what were your experiences with children with special needs or crisis caregiving? (in other words, was this situation new to you?)
We had little experience caring for kids with special needs. But I had a minor in special education and had done several practicums in college in special education classrooms. Also, my father was diagnosed with multiple sclerosis when he was twenty-nine. I was two at the time and only remember him being in a wheelchair. He was in our home while my siblings and I grew up and we were actively involved in his care. So care giving was not new to me.

Q. Give us a peek into your pregnancy with your son. Did you have any thoughts and feelings during that time that you felt were "heaven sent" to prepare you for what you would soon face?
My pregnancy was quite normal though my blood pressure was always a little high and the further along I got, the more it looked like a basketball was stuck on my stomach and hard as a rock. And when the doc let us listen through his stethoscope during check ups, it sounded like Allen was crashing from one side of me to the other, yet I felt very little movement. (I didn't realize how odd that was until six years later during my second pregnancy with our daughter.) But we had no premonitions during the pregnancy that anything was wrong and ultrasounds were brand new and rarely used. I thought it was pretty cool that Allen was born a week early, the day after school got out, so I had one more week with him. That was in the early hours after his birth, before we knew anything was wrong, of course. Mostly, we were just glad to get to the hospital before he was born. My labor was only about 2 1/2 hours and we lived 90 miles from the hospital, with the first 55 miles a windy, scarcely populated gravel road.

Allen at 3.5 weeks: Coming home from the NICU

Q. Were you private or open about your son's diagnosis and needs?
Very open. Getting food stuck in the stricture where they rejoined the esophagus was a real danger. So we had to be open with day care providers, teachers, and babysitters. When he had a surgery at age 15 (2/3 of his lower esophagus was removed because of what they believed was pre-cancerous tissue), I emailed regular reports to his teachers. They read the reports to his classmates.

Q. Did you experience a period or varied periods of grieving? What did that look like for you?
Just a few days ago, I was looking at the trailer for my new book, Different Dream Parenting. It includes several pictures of Allen in NICU, and I felt so sad again about not being able to bring our baby home after he was born like other parents do. So grief lasts a long time. I remember grieving on his first Halloween because he was in the hospital and couldn't wear the little costume I'd made. Then I thought my feelings were wrong, but they were grief for a loss. And it's okay, even necessary, to grieve those losses.

Q. What benefits could someone who does not have or know a child with special needs take away from your books?
The books give others a glimpse into life as the caretaker of a child with special needs. Many people who read the first book, A Different Dream for My Child, have commented that they had no idea it was so complicated and difficult. It also helps them know how to begin a conversation with parents. The second book, Different Dream Parenting, is a valuable resource for anyone working with families who have kids with special needs - educators, health care workers, friends, church staff. It can help them help families tap into available resources.

Q.What is the one message you want to convey via your books:
Parents of kids with special needs often feel isolated. The one message I want to convey is that they are not alone. Many other parents have experienced similar trials and emotions and so did God when he sent his Son to earth.

Baby Allen:
So alert to what is happening to him
First photo of Allen after surgery. He is three days old here.

Q. What is your faith/belief system founded on? What is your faith background?
My husband and I were both raised in church going families and became Christians as children. But our first real faith test came with Allen's birth and subsequent medical issues. Our pastor friend and his wife led us through the book of James. At least that's what Hiram says. The only thing I remember is that they cared enough to come. They were the hands of Christ to me. But whatever they said made a difference because my faith and Hiram's grew by leaps and bounds during those early years with our son.

Q. How did you and Hiram meet? When did you know he was "the one"?
Believe it or not, we met at the freshman orientation dance at college and the rest is history, At least it was history once we finally found each other again and started dating. Actually, I knew where he was, but it took him longer to find me. Mainly because he was so shy that he kept looking down at the sidewalk and didn't see me trying to catch his eye. He was such a nice guy and so sincerely trying to live his faith, I didn't need to look for anyone else.

Q. During this time of crisis and in the years that followed, what did you find that you "needed" from Hiram, your husband.
My husband Hiram gave me what I needed, though it wasn't always what I thought I needed. I thought I needed a husband who would make everything okay by doing big, dramatic things. But what I needed was a rock, and Hiram was always there for me and our son, Allen. He actively parented our son, rubbing his little cheek in NICU while I rested and recovered from childbirth. Once Allen was home, Hiram often slept in a recliner holding Allen and jiggling his tiny bottom all night long so I could sleep.  While I asked God why our son had this birth anomaly, Hiram accepted it and kept going. When I said we needed spiritual support, he asked a pastor in town to do a Bible study with us.

Q. What was most helpful to you when in a crisis situation?
Hiram was my biggest help. He is extremely calm in a crisis. He began EMT training during the year after Allen was born so that somebody in our house would be able to intervene medically (we both knew it wouldn't be me) if necessary. He enjoyed the training so much he eventually went back to school and became a nurse.

Q. Did the stress put a strain on your marriage? How did you work through that?
This was never an issue for us.

Q. Hiram's name sounds deliciously Amish. To me, his name sound so strong yet comforting.  I'd love to hear the story behind his name!  (guilty question that I have always wanted to ask.. ha! ha!)
You crack me up, Amy. Hiram is a twin. He and his brother are named after their mom's dad, Hayes, and her older brother, Harold whose nickname was Hiram. Why was his nickname Hiram? Because he was a preacher's kid with the last name Walker. They were a family of teetotalers, so his friends called him Hiram with a wink and a nod to Hiram Walker whiskey. So while his name sounds Amish, my teetotaler husband is named after whiskey.

Q. Did Hiram ever surprise you in a time when you REALLY needed "something" from him?
Does the year he gave me a toilet seat for Christmas count?

Q. Your advice to couples?
Don't give your wife a toilet seat for Christmas.

Q. What provided a source of strength for you in hard times? (any quotes, verses, songs, etc that particularly lifted you up?)
Knowing that people cared and were praying for us was my greatest source of strength.

Q. Did you have a "safe friend"? (someone you could say anything to - even yell it - and you felt perfectly safe in that relationship)
Again, that would be Hiram.
Q. Were friendships with other couples difficult to maintain? How did you handle this?
Because of the dynamics of the small town where we lived, that was not an issue. We had to make our own fun which usually consisted of hauling all our kids to each other's houses. The older kids would take care of Allen (he really was the town pet being the son of the school teacher) and we would all eat supper together and go home when the kids got tired.

Q. How did you balance parenting, teaching, being a wife and investing in yourself?
During the first school year after Allen was born, God blessed me with a wonderful group of students. The days were so busy with them, I didn't have time to worry about Allen, which was another blessing. When at home, I was quite a worrier that first year, until I finally realized that Allen was in God's hands whether our baby lived or died. At that point, I was able to enjoy being his mother. Really, there wasn't much time for myself for about three years, until Allen's health improved and the trips to the doctor let up. When we lived in South Dakota, doctor's appointments were a 240 mile round trip. Sometimes we would stay overnight in a motel with a pool. Often we went out to eat after appointments, just for a break. The most fun I had was in the summer when a neighboring town did a community theater production. Hiram stayed with Allen so I could be in the shows. It was nice to pretend to be someone else for awhile!

Q. Tell us a few things that most people don't know about you.
Every one of my elementary school report cards includes a comment along the lines of "Jolene needs to quit daydreaming and get her work done." I was very involved in drama in high school and college. Among other noteworthy roles, I have played a nymphomaniac, a hedgehog, and a deaf drunk in a nursing home. In another play, I wrestled with a priest in a straight jacket.

Q.How did your personal upbringing (the parenting of your parents or life lessons you learned) prepare you for the life you have led?
My parents were an example of perseverance and commitment. Mom cared for Dad in our home from 1959 until 1983 when he went into a nursing home. From then until his death in 1997, she visited him every day. She honored the "in sickness and in health" vow to Dad's last breath. Though she has never been comfortable saying "I love you" she taught me what love is. She was also a very good money manager and taught me to always live within my means and save as much as possible. My dad was an incredibly funny man, and my sense of humor comes from him. No matter how bad things get, I always look for the humor in what's happening and think of Dad.

Q. Do you have an example of a time where ... while going through something, it made no sense or didn't feel fair, but later - much later, saw the purpose in it or were able to help someone because of it?
Hmmm...basically my entire life has been an example of that idea. Everything I write comes from what seemed unfair at the time, but resulted in experience through which I can help others.

Q. Tell us about your blog features resources and products for parents of kids with special needs. Several guest bloggers (including Amy) share stories of their lives parenting kids with a variety of special needs, too. Reading comments from those who visit the blog is a highlight of my day. I love to connect with them and point them to resources. If readers click on the "buy the books" tab, they can watch book trailers, download excerpts from both books, and follow the links to their Amazon pages. Or people can email me and order signed copies.

***Stop in tomorrow to read Part 2 of my interview with Jolene Philo***