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Wednesday, December 14, 2011

About "Different Dream Parenting" - A Guest Post from Author Jolene Philo

On October 26th, I got a lovely surprise in the mail -- my copy of Jolene Philo's book, "Different Dream Parenting" finally came in!

I had the privilege of speaking with Jolene in August 2010. She was in the early stages of writing and I was one of the many parents that she interviewed to be included in the book. Jolene already wrote a wonderful book titled "A Different Dream for My Child." The book I was being interviewed for was going to compliment that book. It was an honor to get to know such a phenomenal woman and to share our family's story. There was something therapeutic about talking to Jolene. Since then I've been thrilled to see Jolene posting some of the information I've shared with her on her blog. It feels good knowing that my input somehow helped others.  And Jolene, thank you for dubbing me your "Queen of Apps" in your latest post. I think I'll have to put that on my resume. ;) You can click the links below if you want to see those blog entries on

Seriously? There's an App for That? - Posted September 20, 2010
What the Personal Caregiver iPhone App can Do For You - Posted October 27, 2010
Breast Feeding: There's An App for That, Too. - Posted May 27, 2011

Below you'll find a guest post from Jolene as well as an except from the book. You can purchase the book from her website or you can click here to purchase it at 10% off the retail price. I also have one copy that I want to give away to one of my readers FOR FREE! If you know of family who could benefit from this book, or if YOU can, please feel free to privately message me or comment below. :)

Words from Jolene...

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, and 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, including Tiffany, 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 sibs.
• 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, Tiffany, for this opportunity to guest blog at The Art of Lion Taming and tell people about Different Dream Parenting.

An Excerpt from the book...  

I Didn’t Sign Up for This, God!

Have you ever had one of those dreams where you can’t move? The car is racing toward the edge of a cliff and you can’t lift your foot to press the brake pedal. An attacker is breaking down the door to your house and you can’t raise your arm to dial 911. Your child is about to run in front of a truck and you can’t open your mouth to scream.

My bad dream became a reality in 1982. My husband and I stood beside our son’s isolette in the neonatal intensive care unit. An IV needle pierced Allen’s tiny arm, and angry red scars crisscrossed his chest. One end of his feeding tube hung on a pole beside his IV bag. The other end rose from the soft skin of his tummy. Pain etched his wide forehead and tugged at the corners of his perfect rosebud mouth.

More than anything, I wanted to reach out and take his hurt away. But I was trapped in a bad dream. Immobilized. Inadequate. Helpless. Though God had assigned me to love and care for this beautiful child, I could do nothing to minimize his pain. My thoughts were an inward scream. This isn’t what I signed up to do, God! I don’t want to be a helpless onlooker. I want to parent my child. How can I care for him? What can I do?

As the parent of a child with special needs, you’ve probably experienced the same sense of helplessness. Whether your child is critically or chronically ill, mentally or physically impaired, develop- mentally or behaviorally challenged, you want to do something. You want to ease your child’s pain, but you don’t know how. You want to help your child realize his or her full potential, but you don’t know where to begin. You want to ask God about your child’s suffering, but you don’t want to be condemned for questioning His wisdom. You want to believe God is with you, but you don’t know how to find Him.

You’re stuck in a bad dream. You can’t move. You can’t speak. You want someone to shake you awake and tell you everything will be okay. Instead, you wake up and must become the parent you never expected to be. You doubt that you’re up to the task. You’re worried about your child’s future. And you’re wondering, Does anyone understand what I’m experiencing?

The answer is yes, many parents understand your situation. In the United States,
• 10–15 percent of newborns, or 431,000 annually, spend time in neonatal intensive care according to the March of Dimes.
• 12 percent of children between ages 1 and 17 had medical conditions serious enough to require hospitalization between 2004 and 2006, the most recent years for which statistics are available at the Centers for Disease Control and Prevention.
• 13.6 percent of students between ages 6 and 21 were enrolled in some kind of special needs program according to the National Center for Educational Statistics. That’s 706,000 of our country’s school-aged children.

Lots of kids mean lots of parents, dads and moms who are valuable sources of information and advice. In this book, dozens of them share with you the wisdom they gained while parenting kids with special needs.

Support can also come from the surprising number of professionals who work with families of kids with special needs. These professionals—and the resources they’ve created—are available at hospitals, medical facilities, government agencies, private organizations, businesses, schools, churches, and more.

This book brings you advice from professionals around the country and provides information about national organizations and resources. It also gives tips about where to start searching for state and local resources. More often than not, your problem won’t be a lack of resources, but a lack of awareness of them or inability to access them.

Different Dream Parenting contains six sections: Diagnosis, Hospital Life, Juggling Two Worlds, Long-Term Care Conditions, Losing a Child, and Raising a Survivor. Each section is divided into four chapters. Three chapters address practical issues. The last chapter in each section addresses spiritual concerns.

Parents of kids with special needs often wrestle with prickly spiritual questions. I sure did. Sometimes I still do. So do all the parents interviewed in this book, and most of the professionals, too. Every day, we continue to ask questions about our kids’ lives and futures. Gradually, we learn more about how to trust God’s timing and wait for His answers.

As you read this book, please ask your faith questions. Read about how parents and professionals learned to ask questions, wait, and listen. Consider the answers they have discerned and their suggestions about how to find comfort and courage in God’s Word. When you are ready, try out their ideas about how to pray and use Scripture to hear God’s answers to your hard questions. The thirty-day prayer guides in appendix A are designed to help you engage in conversation with Him.

But even with prayer guides and Scripture to guide you, I know how hard it can be to trust the God who is allowing your child to suffer. So I won’t condemn you for asking prickly questions. Instead, I’ll encourage you, cry with you, and support you when your faith grows weak. When you can’t hang on a minute longer, I’ll hold you close until your strength and your faith return.

I hope this book helps you break out of your bad dream, wake up, and move forward with joy and confidence. I pray that the stories of parents and professionals in this book will give you hope and strength.

Most of all, I hope you discover the truth God has revealed to me and many other parents. Raising a child with special needs isn’t a bad dream. It’s just a different dream. And surprisingly, a different dream can be the best dream of all.

Taken from Different Dream Parenting, 2011 by Jolene Philo. Used by permission of Discovery House Publishers, Box 3566, Grand Rapids, MI 49501. All rights reserved

Monday, December 12, 2011

Girls just wanna have fun!

A Tweet my boys sent me from my SIL's account
John and the boys went camping the weekend of my sister's bridal shower (8/12-8/14.) Lucky for me, my niece Demi agreed to sleep over to keep the girls and I company because I'm the biggest chicken-shit ever. It had been almost two years since we had one of our infamous sleepovers, and it made me realize how much I've missed her.

We had a blast-- whether we were watching Never Say Never or Odd Future music videos, laying in bed watching old movies, window shopping at super rad antique/vintage oddity stores, or exploring (and getting lost with very little gas in my tank!) in the Haight-Ashbury. It was good times through and through! She was a tremendous help that weekend.

Here are a few pics from my sister's bridal shower at Crown & Crumpet. There was a mix-up with our reservations -- we were supposed to get the private couch area by the fireplace -- but all in all we had a great time. :)

The banner was supposed to go above the fireplace so we had to improvise. LOL!
Favors and menu made by yours truly.

Noie's 1st tea party (Niki was with my MIL that day.)

The Bridal Party (and me unsuccessfully trying to hide Noie in her SleepyWrap.)

Sunday, December 11, 2011

Snowflake Tutorial

When I found out I was pregnant, I instantly knew that the baby's 1st birthday was going to be a "winter wonderland." My winter wedding plans were derailed by the little miracle growing in my belly so I vowed to have my wonderland come to life one way or another! Now here I am, exactly one year from the day I was originally supposed to get married, writing about my little snow baby's 1st birthday plans. :)

For the past few weeks, I've been obsessed with snowflake-making. If you follow me on Instagram or Twitter, you may have seen me churning out quite a few of these bad boys. I originally learned how to make them from a holiday craft handout that the boys brought home from school. Over time, I refined my technique and after numerous requests, agreed to post a tutorial on how to make them. This is my version of the many, many 3D snowflake tutorials out there. I promise it's a lot easier than it looks once you get the hang of it. :)

6-8 sheets of paper*
1 pair of scissors

*The size of the paper you use depends on the size you want your snowflake to be. Keep in mind that smaller snowflakes are much harder. With that being said, I suggest you use a standard 8.5x11 paper for your first snowflake. For the example below, I quartered one 8.5x11 sheet of paper. It's easier to photograph a smaller snowflake for tutorial purposes. (I used vellum paper, but you can use any paper you want.)


Step 1: Take the paper and fold it at a diagonal as pictured below.

Step 2: Trim off the excess paper to make a triangle. You can skip this step if you're using 12x12 scrapbook paper for your snowflake.

Step 3: Fold the triangle in half to make a smaller triangle.

Step 4:  Take your scissors and snip the folded side leaving approx 1/8" at the end of your cut. (I put 5 straight slits.) You can eyeball the spacing -- it doesn't have to be perfect.

This is what it looks like when it's opened up.

Step 5: Now comes the fun part. Take a pencil (or your finger) and tape the two points of the inner slits together.  

Step 6: Flip the paper over and connect the next row of slits on the opposite side. Flip over again and connect the next row and so forth. Repeat until all ends are taped together.

Flip & Tape.

Flip and Tape

A side view of the flipped & taped sheet.
The final product: One "arm" of your snowflake.
Repeat Steps 1-6 six to eight times depending on how many arms you want your snowflake to have. Note: Things go a lot faster  if you mass produce your triangles before hand.

 Step 7: Once you've created all of your snowflake pieces, it's time to connect them together. Take the center "x" on the side of the individual arms and tape or staple them together to create a chain. 

Before being connected
Hope this picture clarifies where to connect them
The "chain"

 Step 8: Take a small piece of tape and connect two arms together. Repeat this step until all of your arms are taped together in pairs.

For the sake of the tutorial, I took a picture of how to connect the ends BEFORE I made the chain.

Step 9: Close the chain once all of your centers are connected and stapled in the middle.

 And there you have it, the finished product. :) Happy snowflake-making ya'll! :)

It's ALWAYS Sunny in Philadelphia?

This past October, Niki's drug company invited me to share our family's story at a conference they were having in Philadelphia. With John's blessing, I accepted their offer traveled completely alone for the very first time in my entire life. I was nervous, but this was a once-in-a-lifetime opportunity so I couldn't pass it up. (I mean really, when was I ever going to go to Philadelphia again?) My trip was from 10/2-10/4.

Without further ado, here's the story of my trip in photo-essay format. :)

After we attended Church, John and I had a lovely brunch at JoAnn's in South San Francisco before I left Sunday night. My very good friend Kim took me there shortly after Noie was born and it was delicious. 

Here's a pic of my breakfast from that day (The Gaucho.) I realize that my addiction to Instagram-ing EVERYTHING is borderline pathetic, but it's my blog and I'll document what I want, mmkay? ;-P
I took the red-eye to Philly and I tried my best to sleep for as long as possible. My flight arrived at around 6am EST. Novo Nordisk arranged for a driver to pick me up from the airport. The driver met me at baggage claim and he had my last name on a sign! Call me sheltered, but riding in my very own town car has to be one of the coolest things that happened to me this year. The guy had a hat and called me "Miss Intal" and everything! Made me feel like a real grown-up and shit.

Goodbye SF.
Hello Philly!
He was a history buff and had the most badass accent I've ever heard. :)
In case you haven't already noticed, I took pictures of pretty much everything so John could feel like he was there with me. The poor guy tried to get off from work so he could join me, but alas, I had to go alone. Here's some pictures of the hotel and of course, another food shot. That was the best oatmeal I've ever had -- I ordered it twice while I was there!

After I scarfed down breakfast, I took a nice long nap. I'm not a morning person (and I was still functioning on West Coast time), but somehow I managed to wake up at with enough energy/time to do some sight-seeing. First up, the was LOVE park. I've seen the "LOVE" statue around before, but I never knew its origin until my sister's friend Kid told me about it. It was close to my hotel so walked over to check it out.  {Note: From this point forward, you'll see Ethan Lion-Lion make cameos in the pictures I took. The boys were sad that I was leaving so I told them that Ethan Lion was going to be their "stunt double" while I was in Philly.  If Ethan Lion was in a picture, then that meant the boys were "there"too. Kev and Boo really got a kick out of seeing the Ethan Lion pics.}

See Ethan Lion?
After Love Park, I took a nice, leisurely walk to the world-famous Mutter Museum. It started to sprinkle as I was walking and I was ill-prepared. I quickly learned that contrary to the popular show's title, it is NOT "always sunny in Philadelphia." ;) Thankfully, I was able to duck under building overhangs to avoid getting wet.

The Mutter Museum let me use my CCSF ID (yes, I'm back in school) so I scored the student discount on admission. As I was adjusting my camera settings, the cashier advised me that pictures weren't allowed inside the museum. (Sorry guys. You can watch a YouTube video here if you want to see what the museum is all about.) There was a lot fascinating stuff in there, but there was some really disturbing stuff, too. There was an exhibit on President Lincoln's autopsy, the preserved liver of world famous Siamese twins, and the most disturbing part, preserved babies in various stages of development. There were also many "deformed" babies in jars as well.

Call me crazy, but I was compelled to pray for those poor babies knowing that their bodies would never be laid to rest. And I did just that...I prayed. Afterwards, I called John crying because I just needed someone to talk to.  I wasn't expecting it, but it was the most disturbing thing I've seen in a long time.

The entrance
The ticket
A window display. Unclear if these things are actually real.
I wanted to go back to the hotel room, but John encouraged me to make the most of my trip. I felt better after I spoke with him so I rode the bus (last time I rode a bus was in high school!) to see all the historical stuff featured in National Treasure. I must say Nicholas Cage made the Liberty Bell and Independence Hall look 20 times cooler than it is in person. (Maybe it's the suspenseful Hollywood background music? Who knows?)

I wasn't very fond of US History in high school so I guess you can say I'm way too ignorant to truly appreciate the symbolism of our nation's history.  Nonetheless, seeing all of these historical artifacts up close and personal was on my bucket list anyway so mission accomplished, I suppose. The 45 minute tour of Independence Hall was 40 minutes too many for my taste. I managed to glaze over all the history-speak just like I did in high school. I snapped my pictures, stepped back, and found myself being more fascinated by the  the furniture and architecture than anything else. {I realize I sound like an unappreciative imbecile right now, but you have to at least give me credit for being honest.}

Cast from the Liberty Bell
Let Freedom Ring

The Path to Independence Hall

George Washington's Chair
The original railing that was here during Ben Franklin's time
Ethan Lion Lion propped on said railing
I still had a few hours before sundown so decided to check out the the Franklin Institute. I took  the PHLASH to get there and discovered that I wouldn't have enough time to see the entire museum before it closed. (Side note about PHLASH, I highly recommend this mode of transportation if you want to sight-see in Philly, but don't have a car -- $2 will take you anywhere.) There was a really cool mummy exhibit there so I was bummed that I didn't make it in time to check it out.

For whatever reason I decided it would be a good idea to walk to the Art History Museum  from the Franklin Institute. Bad idea! Not only was I wearing the wrong shoes for that type of walk (boots) but the area had too many trees for my taste so it reminded me of the type of places where joggers are found raped and murdered. There weren't any rapists or serial killers in sight, but I'm paranoid so I scurried as quickly as possible to the museum. (I should have took the PHLASH.)

I made it to the museum in one piece, but it was closed. (Boo!) No matter, I took my pictures and hopped back on the PHLASH to go back to the hotel. There were two very cute little boys who were racing up the stairs while their mom was taking pictures, and it made me miss my cubbies. It would have been so cool to take pictures of them at the top of the steps from Rocky.

Had a huge FML moment here. I didn't know the PHLASH went to the museum until I walked up and saw it parked in the front! LOL!

The view from the top of the steps.

I really missed the cubbies here.
Afterwards I took the PHLASH back to my hotel. As soon as I got to the hotel it dawned on me that I skipped lunch. I only had about an hour before dark so rather than go back to south Philly to try Gino's or Pat's, I asked to concierge to point me to the closest place with the best cheesesteak. I can't remember the name of the place, but it did NOT disappoint. As delicious as the cheesesteak was, I could barely finish half of that monstrosity. On my way back to the hotel I stopped by Starbucks to unwind from the day's events.

For his own peace of mind I promised John that I wouldn't go out after dark. So, I spent the rest of the evening chatting on the phone with him, doing my Physics homework, and panicking about my speech the following day. Oh, what a glamorous life I lead! 

I woke up the following morning with knots in my stomach. I never spoke in front of a large group before! To say I was terrified is a gross understatement. To make matters worse, I felt myself getting weepy whenever I started to talk about Ethan while I was practicing the night before. I knew I would be mortified if I lost my cool in front of a bunch of strangers.

A picture I took while they were testing everything out on the projector. It was so weird seeing my stuff up there!

Time was on crack that morning because 1 o'clock was there before I knew it. I was on the brink of hyperventilating when I saw how large the ballroom was. The good news is the coordinators set me at ease right before my speech. It helped that I broke my speech up with a video of Niki's infusion and sharing some family photos. While I was presenting, I looked up at the crowd and I saw a quite few people dabbing tears from their eyes. I *almost* started to cry too, but by some miracle that I maintained my composure despite having to talk about some seriously depressing stuff. It was humbling to know that these complete strangers were touched by our story. I even managed to survive the question and answer portion. At the end of my presentation, I got to meet quite of the few faces behind the drug responsible for saving Niki's life. It was an awesome experience!

I had an hour to spare before I was supposed to fly out, but I called the driver to come pick me up a bit early. I had a great time traveling by myself, but I couldn't wait to go back home to my den. There's no place like home.