Rare, and Precious

Rare Disease Day

Today is Rare Disease Day. February 29 is on our calendar only once every four years. Rare diseases strike much more often, considerably more often that you might think.

The US defines a rare disease as a disease that affects less than 200,000 people at any given time. The average Facebook user has 130-150 friends (depending on source). To put this in terms you might understand, every one of your FB friends represents about 1350 people with just one rare disease. There are about 7,000 diseases categorized as rare by the USCDC. Half of those affected by rare diseases are children.

Lots of money and awareness are raised for heart disease and breast cancer. But what about funding for all those rare diseases that claim the lives of thousands of people every year? Those diseases that, when mentioned, produce a vague nod and raised eyebrow in conversation. Pulmonary Hypertension is one of those diseases. Over 15,000 people die from PH and its effects each year. 66% of those with PH are over age 65. Pediatric Pulmonary Hypertension is extremely rare. I am all-too familiar with this one, very rare disease.

Pulmonary Hypertension Association

Pulmonary Hypertension is high blood pressure in the arteries of the lungs that lead to heart failure. My son, Jacob, was diagnosed with Primary Pulmonary Arterial Hypertension in November 2007, when he was 23 months old. In the few months leading up to the diagnosis, he grew more and more tired and lethargic. He coughed frequently and occasionally threw up when he was coughing. During an x-ray to see if he had pneumonia, Jacob's heart was discovered to be quite enlarged. We were sent to Vanderbilt Children's Hospital for more tests, including an echocardiogram. The technician spent a long time looking at Jacob's heart. A few minutes after the tech left the echo room, two doctors came in. They spent a long time looking at Jacob's heart, and then left. A few minutes later, one of those doctors came back in and escorted us to a room. He told me that Jacob had a very severe case of pulmonary hypertension. He also said that he wanted to admit Jacob into the pediatric intensive care unit right then. I was quickly becoming an expert on a disease about which, just hours earlier, I knew nothing.

Jacob, after he got his IV port. Lots of stuff
for such a little boy to carry around by himself.

Dr. Moore and Mary Beth, Jacob's PH team, were great. They provided information and support, tissues and lunch, and patiently answered our many questions. Jacob was completely comfortable with them and soon won over the ICU, and later, the cardiac unit nursing staff with his cheerfulness, wit, and charm. Jacob stayed in the PICU for six days and was released on his little brother's, Sammy's, first birthday. We returned to the hospital bright and early the following Monday morning to have the port inserted for continuous IV therapy. Jacob did well during the surgery and was admitted for recovery (and our training in the disease) for five more days. He suddenly had a healthy pink glow and had more energy than he had had in months. His medicine was working!

For the next two and a half years, we experienced many bumps and several really scary moments. We made many trips to Nashville for appointments and made far too many trips to Nashville in the backs of ambulances. Jacob was life flighted on Thanksgiving Day. He had a break in his line a few days before and had developed an infection. Scary does not begin to describe some of the emergencies. Terrifying would be a more accurate description.

Jacob, Easter Sunday 2010
Always wearing his backpack.

On May 25, 2010, we took Jacob in for his "routine" heart catheterization. He had trouble with the anesthesia and went into cardiac arrest. CPR was performed for 45 minutes to save Jacob's life. His heart was not responding, so he was hooked up to an ECMO machine and admitted to the pediatric critical care unit. That was on a Tuesday. His body began to shut down and he began experiencing a lot of pain. He did not wake back up. On Saturday, he died. He was four years old. I held my baby as his heart stopped beating. It was the most terrible and most precious moment of my life.

Jacob was an amazing little boy. Truly. He was an avid reader. He loved music, puzzles, Thomas the Train, Woody, and The Wiggles. His favorite color was red. He loved desserts, his guitar, and his little brother. He was cheerful even when he was sick. He had bright blue eyes, a sweet voice, and an infectious laugh. He found joy in every situation, strutted down the center hallway at church, and charmed the nurses out of their equipment in the hospital. I could write for days and not communicate everything Jacob was. Jacob. My sweet and wonderful and beautiful first-born son. Gone.

Support research and the search for better treatments. Pray for a cure. Help take the imminent death of a child out of the equation for even one family. Fight Pulmonary Hypertension. Jacob fought it for two and a half years. Don't let his fight be in vain.

Notes to Self

Do you ever have those moments when you think, I really should remember to do (or not do) this in the future? I do and invariably those self admonitions have to do with my own or someone else's blatant stupidity or carelessness. Rarely do I think, Wow! That was awesome! I need to remember to do that again! Well, in the kitchen I have those kind of a-ha moments, but in life? No. Not so much. In fact, no so ever.

Homer Simpson, "D'oh!"

Note to Self: Shut up. My Mom knew what she was talking about when she admonished me, like, a gajillion times, "If you don't have anything nice to say, don't say anything at all." I really and truly should keep my mouth shut more often. And my figurative mouth in electronic conversations. I just have this horrible, but so much better than it used to be, habit of saying things that I really should not say. And 99.99% of the time, I realize my mistake immediately. But once those words are out, I can't reach out and grab them and shove them back into my throat. Thankfully, there is a delete button for Facebook, but that does not always guarantee that comment will be gone before anyone can read it (darn cell phone alerts!). There have been numerous, like way too many to count, times when the picture of Homer Simpson's famous "D'oh!" comes to mind, starring me as Homer. I really and truly should consider a vow of silence. My husband would probably be on board with that one.

A double funeral procession

Note to Self: Quit yer complainin'. Just when I start to get all self-righteous and think that my world is falling apart, I see or hear of someone who has it worse than me. I am learning that even when horrible things happen, there is always, always, someone who is suffering more than I am. When I think about my perception of the worst thing that can happen, I think of losing Jacob. Holding my four-year-old son while his tiny, precious heart stopped beating was the worst, most horrible thing that has ever happened to me. And also the sweetest, most tender event of my life. A parent should never have to do that, but I know people who have lost more than one child, or even all their children. There are those whose children were abducted and brutalized before they were murdered. Parents have experienced more grief than I have. And my heart breaks for them. There will always be someone who is worse off than me. I just need to look for her and find a way to reach out to her and show her love. I need to learn to recognize and embrace the blessings in my life.

There were so many outfits I could have chosen for
this. I went with the celebrities who wore outfits
knowing they would be photographed.
And they were ok with that? Yikes!

Note to Self: Look in the mirror before leaving the house. There are some outfits that should not be worn outside the house. Shoot, there are some outfits than should not be worn inside the house. If you ever see me in an outfit that should not ever be worn again, ever, please pull me aside and tell me privately. Do not post my picture all over the internet or Facebook or People of Walmart. When I go clothes shopping, I look in the tri-mirror most of the time, but outfits do slip past the sensors. Ya know, those outfits that in the dimly-lit-with-soft-pink-bulbs-dressing-room-with-carnival-skinny-stretch-mirrors look absolutely fabulous and oh-so-slimming from every conceivable angle? Yeah, those horrible, train wreck outfits that burn the retinas and earn an infamous spot on some well-dressed size 6 Facebook wall. Well, I don't know about you, but I suddenly need to buy some new clothes. And look in the mirror multiple times, from all angles, in bright lighting, with my contacts in before leaving my house.

Crazy Lady

Note to Self: Go to bed at a decent hour. When I was in college (the first time) there were many nights when I never did go to sleep. Now-a-days, if I'm not asleep by 10:30, when Sammy wakes up at 6:30 the next morning, I can barely function. I must, must, must have eight hours of sleep every night. If I get less than eight hours of shut eye for several nights in a row, I get physically sick and become a rather ill-tempered and emotional woman. Sleep is not just necessary for life, it is necessary for sanity. Mine and everyone's around me! A sleep-deprived Dana is just not a happy, joyful, polite, intelligent, tactful, patient, loving Dana. I struggle enough with all that stuff with sleep. Without sleep, I don't struggle with it at all. Because I don't care if I'm acting horribly! I have to be disciplined and diligent in ensuring that I get enough sleep.


So the next time you do something stupid or careless, really and truly make a mental note of it. Or jot it down. Or set up a daily reminder in Outlook so that you will never, ever repeat it again. Or just come over here so I can take a picture of you and post it online for all the world to look at and think, Well, at least I'm not as clueless as her!

Swamped with Studying and Some Original Recipes

Missed me? You may not have missed me (probably not), but I have missed blogging. I've just been swamped with school work lately and have had little time to blog. Beginning graduate work 18+ years after completing a BA means LONG hours studying. Not sure if it's the subject matter (a change in academic discipline), the graduate level aspect, or my age (no!), but whatever it is, I have to study. A lot. And I have never studied in my life. I'm doing well, thanks for asking, but it is requiring work. Blogging has taken a back-back seat. Like third row back seat.

So anyway, just to let you know I'm still here, I thought I'd post a couple of my original recipes. I'll post pictures as I make these.


This recipe came about on a day when we had a bunch of errands to run and so I put some stuff in the slow cooker and expected a nice, attractive chicken dish topped with a black bean salsa. Instead, when I went to take it out of the slow cooker, the chicken just fell apart. So I went with it and ended up having a family favorite and the most-requested recipe I have ever made. A happy accident, to say the least.

Mexi-Crock

I know, the name is lacking. If you can think of something better, feel free to suggest.

4 Frozen Chicken Breasts
1 Envelope Taco Seasoning
1 Tbs Chicken Bullion
1 Can Black Beans, Rinsed and Drained
1 Can Corn, Rinsed and Drained
1 Can Rotel
1 Can Chopped Green Chilis
1 Can Cream of Chicken Soup
1 Cup Sour Cream
1 Cup Shredded Cheddar

Spray large crock pot with Pam. Layer in order ingredients, ending with the chopped chilis. Cook covered, on High for 4 hours. Shred chicken. Stir in soup. Cook for another 30 minutes. Just before serving, stir in sour cream and shredded cheddar. Serve with tortilla chips or over rice. Or rolled up in tortillas or on tostada shells. Or just out of a bowl without anything.


This recipe was inspired by a friend who loved corn casserole and loved Mexican food. He suggested that I combine the two, so I did. And man-oh-man, is it good!

MexiCorn Casserole
1 Med Onion, Chopped
2 Tbs EVOO
2 Cloves Garlic, Pressed
Pickled Jalapeno Slices, Chopped (I use about a ¼ Cup)
2 4 oz Cans Chopped Chilies, NOT drained
1 Tsp Cumin
1-2 Tbs Butter
1 14 oz Can Corn, Drained
1 Cup Butter, Melted
2 Cups Sour Cream
2 Tbs Sugar or Splenda
6 Eggs
2 14 oz Cans Creamed Corn
2 Pkgs Jiffy Corn Muffin Mix (You could just use self-rising cornmeal, about 4 cups)

Preheat oven to 375.

Gently saute onion, salt, and pepper in EVOO until onion is soft. Add pressed garlic, chopped jalapenos, chilies, and cumin. Cook until onion is completely cooked. Add 1-2 Tbs butter and the whole kernel corn. Crank up the heat to lightly brown the corn. While corn is tanning, mix together remaining ingredients. Stir in onion and corn mixture. Pour into greased baking dish and bake for about an hour, or until golden.

To lighten it up, use half the butter and add 1/4 cup of milk to the liquid mixture. I used about a half cup of jalapeno slices before chopping.


And here's my pancake recipe. It is not your average pancake. They are much healthier, higher protein, lower sugar, and these will stick with you till lunchtime. I only use low-sugar or sugar-free syrup to further avoid insulin fluctuations.

Dana’s Power Pancakes
1 Cup Self-Rising Flour (feel free to use whole wheat)
½ Cup Quick Cooking Oats
¼ Cup Wheat Germ
¼ Cup Flax Seed Meal
¼ Cup Powdered Milk
2 Tbs Brown Sugar
3 Eggs
½ Cup Sour Cream
1 Tbs Vanilla
1 Tbs Maple Flavoring
2 Cups Buttermilk, more or less depending on how thick you like your batter
Pam cooking spray
Butter, Softened
Warm Syrup

Preheat pancake griddle over medium to medium-low heat. Spray with cooking spray before each pancake. Pour desired amount of batter onto hot griddle. Let sit until edges are dry-looking and bottom is golden brown. Flip. Cook until golden brown. Place on plate and spread with softened butter. Serve immediately with warm syrup.


And here's a sinfully delicious dessert. I adapted it from several brownie recipes. This one will spike your insulin, but I'd say it'd be worth it every once in a while. ;)

Triple Chocolate Brownies
½ C Butter, melted
1 C Sugar
1 Tsp Vanilla Extract
2 Eggs
2 Tbs Hersey’s Chocolate Syrup, Caramel Topping, OR Nutella
½ C All-Purpose Flour
1/3 C Cocoa Powder
¼ Tsp Baking Powder
¼ Tsp Salt
½ C Chocolate Chips

Preheat oven to 350 degrees. Spray 8x8” pan with Pam.

Whisk together butter, sugar, and vanilla. Whisk in eggs and chocolate syrup. In a separate bowl, whisk together flour, cocoa, baking powder, and salt. Gradually stir the dry ingredients into the wet ingredients. Stir in chocolate chips. Spoon into greased pan. Bake at 350 degrees for 25-28 minutes, until edges are set.


So, there ya go. A few of my very own, original recipes. Keep me in your prayers through all this insane studying I am doing. I'd like a 4.0 on graduate work. I won't tell you what my GPA was when I did my BA. Let's just say that I majored in English with a concentration in socializing.

Play and Let Play

Kids like to play. Little kids, medium kids, big kids, really big kids: all of them play. The very definition of kid includes the word play. 

kid  noun  \'kid\  a young human who is required to actively and loudly play, indoors or out, at all hours of the day and night

See? Kids play. It is an intrinsic value of the human child, aka kid. And when kids are playing, they feel good enough to play. Be thankful if your children run around like wild things. Parents all over the world would give anything for their children to be able to run around and play. Let your kids play. Not all kids can.

Jacob, Dancing with the Stars

And since kids like to play, and in fact must play, I feel the strong desire to play with them. At times, it is imperative that I squelch that urge and act like an adult. Like when we're not at our house or when we're at church or in a restaurant. And I want Sammy to know that there is a time and a place to play and be loud. But honestly, when my five year old son is happily squealing and running through the house, my first tendency is to give chase and play with him. Granted, I have created a relatively kid-friendly house and have purchased sturdy furniture. Cushions can be easily moved around. I chose our coffee table and end table fully expecting them to become stages. And they have. Many times. 

Jacob on the stage, performing for Sammy and invisible friends. 

Our kitchen chairs have been arranged to accommodate a myriad of stuffed animals and friends for impromptu performances of Veggie Tales or The Wiggles. Our couch is leather and is amply able to handle the occasional kid-friendly and oh-so-safe game of Wipeout. The furniture is arranged not just for conversation, but just far enough apart to make bouncing exciting. My mom would have (and did!) have a fit when I jumped on the furniture when I was four, five, and six years old. And lots of my friends say I shouldn't allow bouncing and running inside the house, but I do. Why? Because this is our home.

I want our home, whether we're in the South or in South Korea, to be full of fun, happy memories. I want meals to be happy and full of good conversation. I want bedtime to be full of loving and cuddling. I want Sammy, when he's 37 years old, to remember home and childhood as a safe, loving, fun environment where children, marriage, and friendships were highly valued, and where discipline was administered calmly and with a distinct purpose. I want his childhood to be remembered fondly so that someday he can offer the same kind of childhood to my grandchildren. 

Sammy is the Bubble Monster!

I want Sammy to know how to have fun and love and respect others for who they are, not for who he thinks they should be. And I will continue to strive to make Sammy's childhood be a happy childhood. I want him to play in a bubble bath for as long as he wants to sit there, and I will happily add a little more warm water so he can get good and pruned up. There are more than enough things for him to get into trouble about without me adding "running in the house" or "jumping on the furniture" or "splashing water" to the list. And I am infinitely thankful that I played with Jacob and let him play and jump and bounce in the house and on the furniture. He needed to play and I needed to play with him. And I wouldn't trade a second of all that mischief I shared with him.

Kids need to play. And as parents, we need to let them play. And learn to play with them. It's fun. Trust me. Play. And let your kids play, too. 

"Let This Blest Assurance Control"

Several years ago, I adopted a verse from the Bible as my own. Since then, that verse has given me peace, strength, and hope to get through the many valleys I have navigated, and am navigating, in this crazy thing called life. I also adopted a song as my own. I sing, cry, and whisper the song in my head or to the top of my voice, depending on the circumstance. The verse and the song are forever entwined in my heart and their message is so very similar. Whether the shepherd king David or Horatio Spafford knew those words would mean so much to me, I cannot dare to imagine. God, however, guided me to the message of Psalm 46:1 and It Is Well With My Soul with unerring accuracy.

"God is our refuge and strength, a very present help in times of trouble." Psalm 46:1


There are many names for God and each has a unique meaning. God. Almighty, Bread of Life, the Consolation of Israel. Deliverer, Everlasting Father, and Friend of Sinners. The Good Shepherd, the High Priest, the Mediator. Mighty God, Great Physician, and Redeemer. Rock, Saviour, Teacher. The Way. The Truth. The Life. He. Is. God!

He is my refuge. My safe place. He is my shelter, my protection, and my sanctuary. He gives me strength. He sustains me, He encourages me, and He is the source of my courage. He is very present. He is always here, right where I need Him. When I need Him. How I need Him. He never, ever leaves me. He is my help. He provides for my needs and He satisfies my longings. He gives me support and comes to my aid. And He saves me when I am in the midst of my darkest hours. He holds me in His arms and loves me through whatever I am facing. With Him, I am never alone. He is mine and I am His. I love Him because He first loved me. He is now, has always been, and will forever be--God.

I deserve none of His love and mercy and grace. And still, He loves me. He knows my every thought and knows every word and picture that flashes through my brain, and He still loves me. He knows me, inside and out, and still loves me. Amazing doesn't even begin to describe it. And if I had been the only person that had ever lived, He would have given up His Son, Jesus Christ, to make the perfect and willing sacrifice to cover my sin. Because of Jesus Christ, He who was all man and who is all God, I am found guiltless. Jesus is the lens through which God sees me. Because of that, all my filth and ugliness and meanness are covered over and washed away as if none of that had ever been there in the first place. And my soul is made well.

No matter what happens in life, I know that God will hold me and keep me. He does not promise that nothing bad will happen to me. He promises to hold me when it does (1 Peter 4:12-13). To be my rock and my fortress (Psalm 62:2).  And He promises to restore my soul (Psalm 23). Even when my son died in my arms, He did not leave me. He is loving me through my grief and is healing my heart.

Horatio Spafford wrote a great song, It Is Well With My Soul, in the midst of suffering the loss of all four of his daughters. Read the story behind the song and lyrics that swelled from the heart of Mr. Spafford. The song has been my favorite of all hymns for years, well before Jacob was even born. I cannot sing it now without tears just streaming down my face, but it is still my favorite song. The message rings even truer since Jacob passed away.

I love the way the Ruppe Sisters sing this song.
Sibling harmony is the best harmony.

If you haven't already claimed a Bible verse as your own, I encourage you to do so. If you don't have a song that tells your heart's story, choose one or write one. When you are going through the darkest hours of your life, you'll remember the words and those words will be a balm to your spirit.