A letter to my "representative"

Regarding your recent visit to Cuba:

Congressman Cleaver,

--Who provided your translator?
--Who planned your itinerary?
--Who invited you to speak in the Episcopalian Church? Did you seek out the church or did the church call you?

I am sad and sick at heart to hear you say, “We’ve been led to believe that the Cuban people are not free, and they are repressed by a vicious dictator, and I saw nothing to match what we’ve been told.” I ask myself, how can our congressman be so naive as to believe this? Did you not study communism in school? Have you forgotten what years of life and freedom have taught you? The problem with Communist dictatorships is that there is no FREEDOM of anything. Dictators can be as charming as anyone and they are experts at arranging pleasant, charming demonstrations of magnanimous gestures but they are not experts at allowing their citizens to speak freely or express dissent. Did you do ANYthing in Cuba that was not arranged for you by someone else? Did you ever stray from your schedule or speak with someone not provided for you by Fidel or Raúl? How is your Spanish? Do you know enough to know if your translator was truly translating or if he/she had instructions to only translate what was pleasant and polite? I won't drag this on any further, you understand my point. The next time you praise a dictator with, “He’s one of the most amazing human beings I’ve ever met,” please remember that many people felt the same way about Adolf Hitler.

Sincerely,

Jennifer Ort
Spanish Teacher and Mother
Kansas City, MO

Quote of the Day

"We are not born into this world with fixed habits. Neither do we inherit a noble character. Instead, as children of God, we are given the privilege and opportunity of choosing which way of life we will follow—which habits we will form. Confucius said that the nature of men is always the same. It is their habits that separate them. Good habits are not acquired simply by making good resolves, though the thought must precede the action. Good habits are developed in the workshop of our daily lives. It is not in the great moments of test and trial that character is built. That is only when it is displayed. The habits that direct our lives and form our character are fashioned in the often uneventful, commonplace routine of life. They are acquired by practice."--Delbert L. Stapley, "Good Habits Develop Good Character", Ensign, Nov. 1974, 20

Yesterday, a friend told me about this fantastic website: www.readthescriptures.com. It is AMAZING! You can create reading assignments for yourself like, to read the Sunday School lesson each week or have one of the children's stories from "Book of Mormon Stories" sent to you or a customized assignment of your own. Then when you read, you hit complete and it keeps track of your reading. If you read on their website (as opposed to just reading the text from the email they send you), you can highlight and take notes and make journal entries. This is such a fantastic and useful website. Our stake HFPE yesterday focused on preparedness in all aspects, but the best part was the talk by Sister Barbara Pace about spiritual preparedness and how we keep our lamps full of oil: daily scripture study, frequent prayer (as in, daily is not enough - twice daily or more), temple attendance, and visiting teaching. WOW - then this website, and this quote, remind me that *I* have responsibility to do MY part in forming good habits and becoming better. How exciting and how emPOWERing!

Listen to the still, small voice. . .

Listen, Listen. . .

All of my life, long before I was introduced to LDS missionaries and the LDS church and all that entails, I have noticed a special feeling that I get when I find something that is good or true. I may not have felt it very frequently through my teen years, but I did feel it and recognize it.

As a young adult, I went on a weekend trip to a church-y thing in Indiana. I went with a group from the United Methodist Church in Columbia which I occasionally attended. I wasn't a solid part of that "group" but they were welcoming and I was curious about this odd group of people who were so wrapped up in God. I was conflicted between the partying life I led in college and the responsible, religious life with which I was raised. Both seemed so extreme: like, go ahead and keep partying and come try drugs too or do a complete 180 and become devoted to church as a minister or layperson who talks to every stranger on the street about coming to Jesus . . the kind of people you cross the street or duck behind a cereal display to avoid.

Neither one really felt right. I partied to fit in with my friends and because it helped me loosen up and let go of my shyness. While it was fun, it didn't feel "right" and it left me with guilt. I was just one of the sheep following the herd. On the other hand, when I went to church (having chosen the Methodist church only because I was raised in it), I felt a bit like an impostor (pretending to be virtuous long enough to go to church and feel better) and I wasn't entirely convinced that going to church was anything more than an attempt to please my parents from a distance. They were all very nice, but I was really on the fence.

I remember very little of that weekend in Indiana, except for one thing. Over the course of the weekend, in spite of my "impostor complex" and in spite of feeling really weird around people who were just overflowing with hallelujahs and amens, I felt that "feeling" confirm to me that God is real. The rest of the stuff (the hallelujahs, talking to everyone about being "saved," and the thought of abandoning all fun to be "good") still left me feeling a little weird, but I knew then that God was not a fairy tale. Now, what remained to be seen (or figured out), was whether or not God actually cared what I did or if he wouldn't mind if I slept around or tried pot or followed along with whatever else my friends were doing. Because we already know he has a soft spot for sheep, right?

I didn't have a name for that feeling at that time, but I knew what it meant, or what I thought it meant. This morning as I've been going back over my lesson for Sunday School (topic: I will tell you in your mind and in your heart by the Holy Ghost), I was reminded that I knew what this feeling was long before I knew what to call it. This feeling, that many call a burning in the bosom, is really a direct communication from God. It often comes in the form of thoughts or feelings in our hearts that enlighten us and help us to feel peace. When God communicates with us in such a delicate way, it's so important for us to pay attention to the message. It's difficult to ignore a burning bush or a heavenly visitor, but we do not need a marvelous, miraculous thing to communicate with God. President Joseph F. Smith's said:

"When I as a boy first started out in the ministry, I would frequently go out and ask the Lord to show me some marvelous thing, in order that I might receive a testimony. But the Lord withheld marvels from me, and showed me the truth, line upon line, precept upon precept, here a little and there a little, until he made me to know the truth from the crown of my head to the soles of my feet, and until doubt and fear had been absolutely purged from me. He did not have to send an angel from the heavens to do this, nor did he have to speak with the trump of an archangel. By the whisperings of the still, small voice of the Spirit of the living God, he gave to me the testimony I possess. And by this principle and power he will give to all the children of men a knowledge of the truth."

I often think of my conversion in terms of the August day that I went to church with the sister missionaries and listened to a talk specifically about the Book of Mormon and felt that whisper of the Holy Ghost in a way I could no longer deny. . .but really, I had been in the process of conversion for some time before that. First, I began to feel dissatisfied with my life as it was. Then I became certain that God was real, though I still wasn't sure if he objected to my partying ways. Then I met the man who introduced me to the missionaries and gradually learned that Mormons are not total freaks and weirdos. Then I met the sister missionaries who gradually, gently taught me line upon line about the truth.

As I look back now, I can see the Holy Spirit whispering to me all along the way, even when it wasn't dramatic enough to stop me in my tracks, immediately. As I go back to preparing the Sunday School lesson after writing this, I think I'll be paying special attention to learning how to recognize the Spirit each day, rather than 15 years later. Happy Sunday!

A Great Video: Both thought provoking and entertaining

I found this as www.angela-stevens.com. I am one who has also changed my position on abortion. In college, I was very strongly pro-choice (or really, pro-let-us-have-abortions-if-we-want-em. When I thought through the issue, I really couldn’t come up with a good reason why I wouldn’t consider a baby, a baby, after conception. But I was really sympathetic with those who got pregnant at the wrong time and I thought it might be better for those babies to not be born into an awful situation where they were not wanted. I was also very worried about what I would personally do if faced with that situation. I was terrified of getting pregnant and certain I never would or could want children.

A religious conversion really opened my mind to the possibility that I was terribly, terribly wrong. I still struggled with the issue for a short time after my that, but a great lesson on the importance of choice really helped me. That was a sticking point for me: choice IS important. But I had not noticed before how that phrase “pro-choice” has been used and misused are really pro-abortion. Outlawing abortion, or even stating directly that it is wrong, does not remove anyone's choice. The choice doesn't have to be between abortion or not abortion. The chocie can also be between having unmarried sex or not. . . or having unprotected sex or not. . . or keeping the baby or finding an adoptive family.

When it comes right down to it, the so-called pro-choice people are not any more about choice than the pro-life people. Those who call themselves pro-choice don’t just want us to be able to CHOOSE whether or not to have abortions, they are actually getting into the business of insisting that young, frightened, confused women DO have abortions, with as little information provided to them as possible. These young women live with the regret (and the depression and the nightmares and the physical reminders) of their abortion for the rest of their life. There is not a medical procedure in the world that you can consent to without being well informed first. . . except abortion. Where is the choice? If it is really okay and what is being killed is not a baby but a fetus or even a “lump of cells”, what could possibly be lost by giving information about the procedure and about alternatives. . . good grief, I was given information and alternatives when I had a mole removed from my neck, and I kept my clothes on for that procedure.

The Anniversary of Roe v. Wade

I am not normally a fan of Dr. Laura, but I found this article (through a link found at www.mormonmomma.com) and I may have to change my status. She makes an excellent point that we can and should continue to influence those around us in a positive way. Even while abortion is legal (and it's hard to believe that will ever change - - certainly not under the current administration), we can and should act to help limit the number of abortions. The government will not solve this problem. The government does not do bailouts for babies - only businesses.

Jarom's Story

Note: I'm reposting this from our old family website that was part of the "Circle of Smiles" webring for www.cleftadvocate.org . Soon, I will get this blog linked into the "Circle of Smiles."

Jarom's Story

Everyone knows, in the back of their minds, that there is a possibility that the birth of their child will have some complications, but we rarely speak of these things. I thought that my husband and I were well read on the “what to expect” until delivery day arrived. Then I quickly realized that we knew nothing about what to expect and we were so unprepared for most of what happened. The labor and delivery were nothing like I planned. Finally, however, our beautiful baby boy was born—Jarom Michael Ort—weighing just under seven pounds. I held my breath, waiting to be happy until we heard him cry. Then I heard the doctor say, “Baby has a cleft lip.” In my mind was one huge “?????” The only thought I dared allow myself was, “It doesn’t matter.” I got one little glimpse of my baby—dark hair, dark eyes, healthy cry, and a gap in his upper lip—before he was whisked away to be cleaned up and examined. As my doctor sewed me back up, I lay there on the table trying to figure out what this meant. I don’t remember if anyone explained to us then what it was or told us about his palate or anything. I can remember searching my memory for any information on “cleft lip”. I really had no idea what it meant but I kept telling myself over and over, “It doesn’t matter. He’s my baby and I will love him and he will be beautiful no matter what. It doesn’t matter.” In retrospect, I think I was afraid to let myself feel anything in regards to Jarom’s cleft.. I was afraid of betraying my baby if I allowed myself to feel anything negative.

The Original Jarom

When I finally got to hold Jarom, an agonizing hour and 20 minutes after his birth, I didn’t spend any time counting fingers or toes. I just held him and examined his funny little face. It took a few looks to become accustomed to his appearance. The gap in his lip was about half of an inch wide on the left side. His right nostril and the right side of his lip were normal. On the left side it just looked like his mouth was open into his nose. Since Jarom’s palate was also cleft, the gap was also on the inside of his mouth. When he cried really hard, you could see that about half of it was missing. When our pediatrician, Dr. Deborah Weems, stopped by the hospital, she was quick to point out that all the tissue Jarom needed was there, it just needed to be “smooshed” together. Dr. Weems was a relatively new doctor, but she had spent time during her residency with Dr. Constance Barone (who would be our plastic surgeon) so she was familiar with clefts and was very matter of fact, calm and positive.

Initially, Jarom had a hard time eating because his cleft was so wide and we did not realize how many different bottles there were for cleft-affected babies. At 6 days old, he was admitted to the University Hospital in Columbia Missouri because he lost too much weight, was dehydrated and jaundiced and we needed help getting him to eat! We were so thrilled when he drank 1/2 ounce in 30 minutes! What he needed was 2-3 ounces every 2-3 hours and he just couldn't get it. So after almost a week, he came home with a nasal gastric feeding tube that went in the right nostril and down his throat into his tummy. This helped him to get all the milk he needed without burning all the calories in the process. He had 20 minutes to drink what he could from the bottle ( a modified playtex nurser), and what was left went down the tube.

Jarom the 2nd

Thankfully, Jarom only had the ng tube for about 2 weeks. At 19 days old, Jarom had his first surgery--lip adhesion. The lip adhesion pulled the sides of his lip together. This did not give his lip a normal appearance but made his lip more functional. He was then able to eat from the modified playtex nurser alone. We had to squeeze the bottle to help him (no suction without a full palate!), but no more feeding tube! At 3 months of age, Jarom had his next surgery—a hernia repair and ear tubes. He was supposed to have had his lip repaired at the same time but his hemoglobin was low and the doctor did not want him to lose that much blood until his hemoglobin went up. And so, Jarom was almost 4 months old when his lip was repaired just in time for Christmas. His lip was repaired December 19 and stitches were removed December 24. Jarom’s palate was repaired a few months later when he was 9 months old. That was the hardest of all the surgeries up to that point. The surgery took longer and the recovery was much harder. It seemed like he did not drink or sleep for 6 weeks!

Jarom, 4 months old, after lip repair

Excluding ear tubes, Jarom’s next surgery was when he was 5 years old. By this time, we had moved to Kansas City and were seeing the team at Children's Mercy Hospital headed by Dr. Virender Singhal. Jarom was scheduled for a palatal lengthening, septoplasty, turbinectomy, and lip and nose revision with ear cartilage graft. All of this was to improve speech and total function of the mouth and to give Jarom a better airway. This was a difficult surgery because it seemed like Dr. Singhal would taking apart everything that had been done and re-doing it! The surgery was long, recovery was slow and before we got home, we had learned so much about the strength of a 5 year old! This was our first surgery where Jarom was old enough to know what was going on and it was quite a change. We prepared him for a lot but forgot to prepare him for the fact that he would look different afterwards. After the initial shock, Jarom adjusted and finally announced a few weeks later the he thought his nose looked great!

The Actual Jarom, taken September 2008

Jarom is now 12 years old. His bone graft surgery was nearly three years ago and went very smoothly. He is in sixth grade and he is as normal as any other obnoxious 12 year old boy! He is both smart and funny. He excels at school and band and is a whiz on the computer. AND he bickers with his sisters, talks too much at school, tries my patience and challenges my ability to answer questions! So far, he has had eight surgeries and is wearing braces. Truly, the cleft is a very small part of our lives right now. Jarom is smart and happy and busy getting into normal boy trouble.

For parents who are just starting out, I would encourage you to enjoy your baby. Get the information you need, particularly on feeding, but try not to overwhelm yourself with too much information. It's best to digest the new information a little bit at a time. What you need to know at the beginning is how to feed your baby, what team will care for your baby and when the first surgery will be. Get through that before you worry about what will happen when your child is 4 or 6 or 16. I would also encourage parents to take lots of pictures before the first surgery. This is the first face of your baby that you will fall in love with. You may find after lip repair that you miss your baby's first smile. It's okay if you feel that way and it's okay if you don't --but you will want pictures either way. Also, don't avoid going in public with your baby before lip repair, just try to prepare a light response that you can give when people ask questions.

One thing that I wish I would have done differently is that I wish I would have allowed myself to feel my genuine emotions (even if they were negative at first) when Jarom was born. I was afraid to let myself think or feel anything except "everything will be just fine". I spent my energy denying my own feelings and reassuring everyone else. There is nothing wrong with having a reaction to the unexpected news that your baby's face is different and that feeding and speech will be difficult and he is going to need surgery to put everything back together! There is nothing wrong with feeling a little overwhelmed at what lies ahead. Really, as Jarom got older and I let myself relax a bit, having a good cry as surgery approaches is a good way to let off steam and, even, to prepare mentally for what lies ahead. I'd so much rather be emotional the week before surgery than to fall apart on the day of!

Our biggest joys have really been the normal joys of parenting any child---his first step, his first word, this first time he asks a question that we don't know how to answer! We have had the additional joy of making it through the first year and thinking, "thank goodness we don't have to do that again for a while!" and the joy of seeing our son grow to the point where the cleft lip and palate he was born with are NOT the biggest issues in his life. Our biggest challenges have, at times, been related to Jarom's cleft. Getting through any surgery, no matter how routine it is to the doctor performing surgery, is ALWAYS a challenge. It is emotional and exhausting in ways I could never have imagined. Feeding Jarom was a big challenge when he was young, both before and after surgery. Actually, feeding was still a challenge after his last surgery (at age 9!). We had to find creative ways to keep Jarom eating (which was really drinking since he had to be on a liquid diet for a couple of weeks) so he would get enough calories after surgery even when he had very little appetite for anything that wasn't a cheeseburger!

So that's the end of our story for now, though we are still in the middle somewhere. It seems silly sometimes to have this all written out, but reading personal experiences of other families really offered me comfort when Jarom was young, so I have hope that this may offer comfort to another.

The Pig

September 2006: On an innocent visit to Grandma and Grandpa's farm in Grant City, a little (very little) pig named Chelsea became an important part of our extended family. Grandma and Grandpa took the kids to another farm to visit and see the baby pigs. Grandma noticed that a little runt was slightly hurt and getting stepped on and soon this little pig was on it's way home with Grandma and Grandpa.

The first weekend we spent with Chelsea, all the kids enjoyed holding her as much as possible. At that point, she was too little and too weak to resist their affection.



Chelsea spent the following week with us in Kansas City because Grandma had to work and would not be home all day to feed Chelsea. The kids loved having a pet . . . especially one that was so opinionated. Each day that Chelsea grew stronger, she also grew *louder* and she really let us know when she didn't like what we were doing!



Now Chelsea is happily living in a little pen in Grandma and Grandpa's yard. She gets to run around outside the pen quite a lot as well and the kids love to chase her. At first I thought she was scared and running from them but it seems now like she *enjoys* running from them. When the kids head inside, she gets bored and lays down in her pen.

Our family's favorite websites

Information about our church

To view videos of high sophisticated scientific experiments

Resource for families or individuals with cleft lip and palate or other craniofacial anomalies

My old blog that may be transferred here or just abandoned

If you're a Mormon or a Momma or both, this site has loads of great discussions if you don't mind vigorous debates

Information and updates about the temple to be built in Kansas City I drive by the site on my way to work!!!

Five great ads in only three minutes

School Pictures 2008-2009

Jarom Michael, age 12, 6th grade

Ainsley Meredith, age 10, 5th grade

Rebekah Jane, age 8, 2nd grade

Holly Marie, age 6, Kindergarten

Our Blog - getting started

We've had a family website at angelfire.com for many years but it is so hard to edit and update, that I've decided to move everything from our family website to blogger. Some of the posts will be old stuff that I am keeping as part of our outreach ("pathfinding") for cleftadvocate.org.