Jena

By Solomon Stroup

This is a story about a little girl who came into this world just a little bit different. This is a story about courage, hope, grace, compassion and love. This is a story which will make you happy, make you sad, make you laugh, and make you cry. This is a story that will touch your heart in all the right places. This story is about a journey that so many of us take for granted. This is her life story, written through the eyes of her father, so that everyone that reads it will know and understand and love her just as I do. The story is in chronological order from the first day of life, up until the present. This story doesnt end, in fact it grows daily, with each memory and moment that I share with her. I hope you enjoy all the moments that I have. And now, I would like you to meet Jena Nichole Stroup, my daughter.

Part One:

May 31st, 2007 Its a little after 7AM, a Thursday morning, if I remember correctly. I just got off the phone with my boss at work. Today, Im not going to make it in. Ive got other plans. My wife has been in the hospital for the last 4 hours with intense labor pains, Shes dilated and ready to have her baby. This is the 2nd time weve been in the hospital this morning. We were here about 6 hours ago getting checked out because my wife thought she was in labor. The nurse sent us home because her cervix was only 1cm and normal.

My wife of a little over a year, Lacey, is the most amazing wife that I could ask for. Shes been by my side since we started dating, and we havent separated at all. She completes what is missing in my life, and ever since she came into my life, I have been complete. She is my soulmate, my inspiration, and the reason for my success. We worked together at Hy-Vee, met, fell in love, and with the prospect of having our first child, we married on February 18th, 2006. Jeffrey Eisen, the oldest of our kids, was born shortly after on April 14th, 2006. That is the short story that leads us into now. Come on baby, you can do it! Im a mess. I havent slept, havent showered in awhile. My mom is on the left of her, I, on the right. I hold her hand and squeeze it a little. This is familiar territory for me. Ive been here before. The doctors and nurses are all around me and soon enough, I can see the head. Its a little messy if you havent experienced birth, and every bit of what you cringe at during health class. After a couple more pushes, the baby is out, and the doctor puts her on Laceys stomach. The nurse hands me the scissors, and I cut the cord, separating her from her mother. As they finish with the afterbirth, I look at Jena for the first time as she starts to breathe on her own and starts to cry. The first thing I notice is her little scrunched up forehead. She has cute little ears, cute lips, a tiny soft nose covered in tiny hairs, and just enough hair on her head to make herself cute. Everything is perfect. The wife is soon relaxing from her stressful labor, Im holding Jena in my arms. All is perfect. My family soon pours into the room to meet her for the first time. My son is the first to be there. He cries loudly, scared, actually scared for his mom. Hes so confused. The baby is crying, Jeffrey is crying, everything is perfect. I joke that hes been replacedmore loud crying. Pretty soon The entire family passes her around. Shes an angel. Im still not sure Im going to

get used to having a girl. Do girls like Ninja Turtles too? Superman? Batman? Can I wrestle with her? I dont know. I just want to hold her.

June 1st, 2007 The first night was a success. She only woke us up three times. Have you ever seen a miracle? Maybe you haven't. Maybe you're altogether convinced that miracles don't exist. Well, they do. My miracle is a little over 18 months old. Her name is Jena. She's my little daughter. She has a syndrome that doctors dont have a name for. There is something "different" with her. Let me explain.

When she was born, the doctors at Genesis Medical Center thought that she had the symptoms for Turner's syndrome. These symptoms include a short ring finger where the digits don't line up. Her ears are small, set lower and down on the sides of her head. Her eyes have a pronounced epicanthic fold. This is the skin between the eye and the nose. Her nipples are spaced farther apart and her chest exhibits a wider shaped crest. Most noticeable is the folds of skin at the base of her neck. She has a webbed neck.

See here:

The day after Jena was born, she had an EKG that noted a narrowed aorta coming from her heart. It is called a Coarctation. Left untreated, she could not have had adequate bloodflow to her hands, feet, and brain. She would turn blue and die. What helped was that her Patent Ductus Arteriosis had not closed yet. Blood was allowed to bypass the heart and continue flowing through her body. This, along with the fact that at the time, her bowels were not working, led the team of doctors at Genesis to send her up to Iowa City. It was at this point that Rev. Robert Hagen was called and that she was

emergency baptized in the Neonatal Intensive Care Unit (NICU) at Genesis in the middle of an intense thunderstorm. We were actually removed from our rooms to the middle of the NICU due to tornado and severe thunderstorm warnings. Jeffrey was also brought into the world in the midst of a severe thunderstorm. Looking back, I hadnt made this connection, but it is notable. This thunderstorm also prevented a helicopter from flying from Iowa City to Davenport. Having being baptized, Jena was placed in a tiny baby incubator/transporter and rushed via ambulance to the University of Iowa Hospital. Normally, the mom is watched for abnormal bleeding and is in the hospital for a couple days before being discharged. Not Lacey. Her discharge papers were being completed as our child was leaving for Iowa City.

What followed next was a very scary and confused time in our (Lacey and I's) lives. Going back to the hospital room at Genesis, we packed up our belongings and put them on a cart. I then called work, and let them know of the situation and that I didn't know if I was going to be back tomorrow (or for a while). I had originally planned on taking 2 days off for Jena's birth. I ended up taking about 3 weeks off. We left the hospital without our newborn, which if you've ever had a baby, you know the routine: You give birth, you spend the night or two, you get discharged, you get the carseat, you put the baby in the carseat, you put him/her in the car and you drive home to anxiously awaiting family at home with a very proud dad running the video camera. We knew the routine with Jeffrey. Well, as we leave the hospital, with the empty car seat and the cart full of belongings that we just brought to the hospital, we were putting them in the trunk and leaving. I called my mom and dad, as I needed someone to watch Jeffrey. Not only

did we not have Jena, but we didn't have Jeffrey as well. We were scared and sad. About an hour after we got home from the hospital on the 1st of June, 2007, we packed up yet again for our ride up to Iowa City. Total time elapsed between discharge and leaving for Iowa City, one hour. We didn't know what to expect at this point. Driving on the line between careful and not careful on I-80 at about 85 MPH up to Iowa City I didn't care if I got pulled over or not, and thankfully, I did not. We didn't know where to go or what to do when we got there. We walked in, asked for directions to the Neonatal Intensive Care Unit at the University of Iowa Hospital and we walked into this large unit divided into separate cubicles, each with an infant with severe problems. We were required to produce ID, and to wash our hands before entering. There were no other visitors allowed. Ours was in one of those cubicles. We found her, alone, and hooked up to a computer with the name "Baby Girl" on it. No one knew her name, at that point she didn't have a name to them. She was just another number, another patient. A Jane Doe if you will. Confusingly, we asked a nurse what was going on, and she was the nicest nurse you could ever have. Laura was her name. She asked us where we were going to spend the night, if we were OK, and took care of Lacey and I. We ended up getting one of the last rooms at the Ronald McDonald house at about 9pm. I was broke, my wife was broke, as she took off the last 9 months of work for her pregnancy.

Jenas first day in the NICU at Iowa City.

Teams of doctors and students pored over her for the next few days, and in that time, she started to poop. One concern was out of the way. The doctors thought that her stomach and her intestines and her butt weren't all connected properly. I had never wanted anything to poop in my entire life so bad, but with Jena, that's all I wanted at that point. On June 3rd, we then left Jena in Iowa City and drove back home, as we were running out of clothes, didn't prepare at all for the coming days, and we needed to refresh and think. When we got back to the Quad Cities, the first thing we did, even before coming home, was that we stopped at Trinity Medical Center to visit another little baby girl that was born on the 2nd of June. Little Elodie Stroup, my cousin Ryan and his wife Jana's little girl. We also stopped at Long John Silver's where my buddy Mike was

working. He's my best friend, and I needed to talk to him for a second. It helped. We then went home, packed up some stuff, went back to Iowa City that night. Gas was expensive then too! When we got back to Iowa City, it was another long night of holding Jena. All I wanted to do was hold her. The nurse came in late and asked us if we needed to get some sleep. I didnt want to leave her. I asked to take Jena with and bring her back the next day. Request declined. In the next days, the doctors informed us that they were scheduling a closed heart surgery on the 8th of June. My Aunt Darla's birthday. Ive never been through surgery before, heck, the worst Id ever had at that point was a broken arm and stitches. Jena was having heart surgery. Eight days old. On the 8th of June, at about 6 in the morning, Jena, Lacey, Jeffrey, Hollyne, Trinity, Mike and I all crammed into Jena's room to hug and kiss her and wish her luck.

Our first family portrait. 6 AM. Right before surgery.

My Aunt Darla was on her way from Orion to visit as well. Surgery took about 5 hours, and it was the longest wait in our lives. I held her and kissed her and just loved her for what I could do. I can fix anything. I can do anything. Any problem, any situation, I could handle. But this, this was different. I was helpless. She was helpless. All I could do is hand her over to the nurses. It was by far the lowest point in my life. Months of happiness, excitement, joy, eagerness, all came to being just 8 days before, when I held my wifes hand at 8 in the morning telling her to push, seeing Jena for the first time, and now, it was over. It was just my Jena, alone with my wife and I. She was laying in a mobile cart, her body connected to a computer. And I let her go. I turned to my wife and

cried. Tears of sadness, real man tears that you should never shed. I cried. I held my wife. She cried. Sobbing together, Jena cried. It was if she felt it too. My Aunt Darla made it a few minutes too late, and shared with us that she saw Jena briefly as she went to surgery. She waited with us, Pastor Michel came up and said a prayer, I tried to sleep. I tried to empty my mind. I tried to escape. Im always in control. Except this time. Half of me expected to hear good news, and the other half felt that Jena was not going to make it through the surgery. I was torn, I was sad, I was angry, I was confused, but one thought and one thought only helped me through this all: God was guiding the surgery. God was doing the surgery himself through the hands of the team of doctors. With that kind of power, how could something go wrong? After 5 hours, we got news, the surgery was successful and that we'd be able to see her soon. Soon was another 2 hours, and when we finally did get to see her, she was asleep, unconscious, hooked up to about 20 different machines and she wasn't even breathing on her own. She had a blue ventilator tube hooked up to her. She had been put into a coma.

The next page may be graphic and upsetting to some. It is especially sensitive to me.

The large blue tube on the right of the picture is her ventilator. The large clear tube on the left is her catheter. The wires at the bottom are monitoring her heart. Other tubes, notably the one by her left foot is a syringe to put medication directly into her body. The last tube, coming out of the left side of her body that starts purple with red fluid in it is her chest tube. This helps with the drainage of fluid from her heart.

Some things I take for granted, like breathing, my daughter needed help with. It was another 2 days before I could hold her. Worst time of my life, hands down. I was broke, material things such as my Xbox and my computer and my car were useless, I had to ask for money to get us through the week, wasn't even sleeping in my own bed, my mother in law, who I had mentioned in my other note, was home alone, I didn't know if I was going to lose my job because I had asked for unexpected time off. And on top of it, I couldn't even hold my daughter. That's the only thing I had done from her birth to the time of surgery was holding her. Now, I couldn't. I cant begin to describe the feelings that I had. This was my time to grow up and become a man. Here she was, 10 days old and smiling, crying, sleeping. And she had been through more in those 10 days than most of us will go through in a lifetime.

We left Iowa City on the 12th of June at about 3:30 in the afternoon and finally got our long overdue homecoming. We stopped at my parents house for a little bit, and then we finally got home. I had left Jena in the hallway and took a photo album into Lacey's mom so that she could see her granddaughter for the first time. We tried to pretend that Jena wasn't home yet, so that Grandma could look at pictures and then surprise her with the baby. Then we brought Jena in and I'll promise that Ill never forget the look on her face when she saw Jena. A peak moment in my life, a high for the roller coaster of emotion that I had experienced.

Anyway, the message is this: There is a God, he does marvelous things, and he does do miracles. I know first hand. She's 18 months old. Turner's syndrome has been ruled out, and we still do not know what genetic disorder she has. At this point, I don't care either. I just spent the last hour writing notes, and before that, I spent an hour or two with Jena cuddled up in my arms as I put her to sleep. She's perfect. Perfect in my eyes. Perfect in my wife's eyes. I do know the harshness of childhood and going to school. Constant ridicule and constantly being put down because of uncontrollable differences. She'll be different. I'm a huge Superman fan, and I've related Jena to that series of movies.

1st Quote-"You will be different, sometimes you will feel like an outcast, but you'll never be alone. You will make my strength your own, you will see my life through your eyes, as your life will be seen through mine. The son becomes the father, and the father becomes the son."

2nd Quote-"There's one thing I do know, And that is, you are here for a reason. I don't know whose reason it is, or whatever the reason.."

Jena is here for a reason. I read the newspaper every day, and every day read about children being killed, aborted, murdered, beaten, raped, shot, etc. I can't stand it. It hurts my heart to read that a baby was found in a trash can or a bathroom. I cry. We had a chance to do amniocentric testing on Jena, we refused. The doctors showed the neck webbing in an ultrasound and suggested testing her fluid. We refused. We were told that something may be wrong with her, and then on the way out of the doctors visit noticing Planned Parenthood pamphlets. We weren't interested. I remember the words of a former friend David who suggested an abortion because having a baby would interfere with our lives. Notice I said former friend. When I talked to people at work about the possibility of having a "different" child, someone suggested abortion. I wasn't interested. It makes me sick to hear about that. Jena is here for a reason. Someone once sat me down and gave me the mathematical percentage of survival from conception to birth for infants in the same situation as Jena with the defects that she has, and it ended up being a 2% survival rate. In most cases, the heart is unable to support the fetus. It gets too be too much, and the heart stops beating and the pregnancy is spontaneously aborted. A miscarriage if you will. Not my Jena, she beat those 2% odds. If she in fact has Turners Syndrome, 99% of those fetuses spontaneously abort during the first trimester. Only about 1:2000 live births occur.

I don't know the future, I can't predict whether Jena is going to live a long life, or live a short life. I don't care. She's living now. She's walking, talking, crying, screaming, smiling, kissing, hugging, and a loving little baby girl. I can't imagine life without her. Maybe someone has taken the time to read this that is in the middle of a decision whether or not to have an abortion or not. Don't do it. Have the baby. Bring the baby to me, I'll adopt it. Leave it at the hospital for someone else to adopt. Don't have an abortion, don't kill the baby after you have it because you think it will ruin your life. Just don't. It's a selfish reason on my part. I don't want to read about it in the news. I don't

want to hear about it.

As I wrap this up, it's about 1 in the morning, and I'm gonna play some Call of Duty before going to bed, I want to leave you with this final note. Jesus loves you. God works miracles. One may argue that it's science and that technology saved my daughter, true, I won't argue that, but I ask to take one step further, and think about who guides these doctors, who provides us with technology and wisdom. God does. With every force, there needs to be something to start it. For example: Take a pencil and set it on the table. It won't move. There needs to be an outward force acting on it. Blow on it, shake the table, and flick it, that's the only way to make it move.

With God, all things are possible. I can do all things through God, who strengthens me and my daughter. With the holiday season fast approaching, think about your loved ones, think about people that are less fortunate than you. Donate a few dollars to a charity, donate a toy, some canned food, leave some money under your tray like I did last week for someone who's job is only to sweep and throw away your food and put away your tray because you couldn't do it for some reason. Christmas is the season for giving, give something away. If you can't afford to give money, donate time. Volunteer for something. Help out at church, ring the bell outside of Wal-Mart. Pray for Jena. Pray that God may continue to bless her richly. Pray that life and the tests and the doctor visits aren't too harsh on her. We have an appointment in Iowa City in 2 weeks. Genetics. They're not going to have an answer. Who cares. Who cares that she's different. I don't. She's perfect.

Part Two: Let me pick up from where I left the story before. Jena has been doing very well. We go to see the specialists in Iowa City twice a year, as they monitor her to see if her surgery is doing well. Everything is Normal What is normal? I dont know. Jena is doing great. I think shes amazing. She has her big brother looking out for her, watching her, fighting with her. The perfect family. My wife and I both work full time, we live in a little house in Rock Island. Laceys mom is in a nursing home, and she is recovering from having her leg amputated. We visit regularly, and she loves to see the kids.

Sometimes I sit and wonder what God wants me to do with all of this. I have experience and knowledge and I seem to waste it. Shes so adorable. Ive been blesse d with a gift. A gift of love and joy with my two kids. Between work and home and the kids and my

wife, everything is great. I cant seem to ask for anything else. Maybe this is the lesson. Bad times precede good times. Shes amazing.

Easter 2009

Looking at her now, I cant predict the future. I know one thing. She will be different. Probably wont have kids, be short. Right now, shes in the 8th percentile for height. She will be tiny. In contrast, Jeffrey is in the 95+ percentile in terms of height.

Part Three: Well. Here we are. Life has changed tremendously. In March of 2010, I bought a house. We were forced to move out of our old one we were renting because he wanted to sell it. It was a piece of garbage. Our new house has 2 stories, and about 9 rooms or so. My wife and I have our own master bedroom with a bathroom attached to it. I have my dream theater system with a 50 TV. I can sit on my couch and play Xbox as late as my kids will allow. I have a full fledged racing simulator, triple screen with mounted pedals and a shifter kit. Jeffrey and Jena have their own room, complete with a TV and an Xbox. Jeffreys in school now, Jena is not yet. She wants to go. She just cant.yet. Downstairs, I have all of my Nascar collectibles in the dining room, and a train set in my den. Everything is almost perfect. Let me back up a little bit. In late 2010, my wife called me from work. I happened to be home with the kids and she proceeded to ask me if I was sitting down. I was like okand she told me she was pregnant. Pregnant? Again? How could this be? After Jena was born, and going through that time, we decided we didnt want any more kids. We were done. We had the perfect family, one boy, one girl. Anything else would offset the balance. We went to the doctor, who wasnt too excited, thinking we were in for some routine pregnancy test and that the two home pregnancy tests we took were right. She was pregnant. I calmly leaned over Lacey and explained that we werent there just because of the pregnancy, but that Lacey was producing positive tests while on the 10 year IUD. Confirming the pregnancy via blood test, the next step was the removal of the IUD. We went to the doctor 3-4 different times before we got it out. Such an eventful start to this pregnancy. The first one, Jeffrey, Lacey had preeclampsia. She also fought hyperemesis and

dehydration. The second pregnancy was fine, however, it was after Jena was born that all the problems happened. This third one wasnt going as well as we had planned. We just bought a house, just settled down, and started to enjoy ourselves. Now, we had another little one on the way. That wasnt all. Laceys mom was in and out of the hospital regularly for issues with her health. She had MRSA, she had infection, diabetes was getting out of control sometimes. But she was excited, thrilled that she was having another grandchild. Throughout the pregnancy, Lacey was monitored for lots of different problems, and she had severe morning sickness again. Although not as bad as the first time, she was hospitalized once with dehydration. We fought it this time. Drinking Gatorade, throwing it back up, drinking more, working 40 hours a week it was impressive what my wife had been doing. She was carrying my third child, and working hard at it. It wasnt until about halfway through the pregnancy that Lacey got some very bad news. Her mom was had end stage lung disease. It was terminal. We had previously wanted the sex of the child to be a surprise, as we didnt need to prepare one way or the other. W ith us not knowing how long Laceys mom was going to live, we found out the sex of the child. It was another boy. That explains the similarities between Jeffrey and this pregnancy. Christmas of 2010 came, and Laceys mom was in good spirits and she came home. Home to our new house, home to our family, and we were all there. Jeffrey, Jena, Lacey, her mom and I.and the unnamed, unborn baby.

Grandma opening up the diapers for the new baby.

The goal was to get her to see the new baby. We couldnt settle on a name for him, because my family had taken up most of the J names. As it got into the new year, we knew we were going to make it. We only had a month to go before the due date, and Grandma Bridget was doing great. She was coming off of her bipap. She was breathing better, She could go on oxygen and be ok. Sadly, Grandma Bridget only made it another month after Christmas before she died. Laceys birthday was on the 16th of January, and Grandma was in the hospital.

This is the only picture I have that lacey and her mom and the new baby are all together.

She was under heavy medication, sometimes taking a while to recognize who Lacey and I were. She knew about the baby, and put her hand on Laceys belly shortly before I could get my camera out. It was a tender moment in my mind. And somehow I was unsure that she would get to see him born. But we fought anyways. Sadly, on January 27th, 2011, she passed away. She would know her grandson before Lacey and I did. Lacey still had a month or two before she would give birth. Coupled with her sadness and emotional stress on her, it started affecting the baby. Ultrasounds noted an enlarged kidney, and other tests showed that there was nothing associated with the same thing Jena had. We went to Peoria to see a specialist. Everything was chaotic yet again. Thoughts raced through my mind again about surgeries and going through what we went through with Jena. I couldnt handle it. I was too nervous, too scared, an d I had

to help my wife grieve. My wife is the strongest person in the world. She is simply amazing. In early March, Lacey went in for an appointment and they noticed her ketones and protein was getting high. Preeclampsia had set in again. Coupled with high blood pressure, she went back in on the 2nd. They would start inducing her that night. We discussed names for him that night in the hospital, finally deciding on Jordan Joshua. Joshua being the name that Lacey would have been, had she been a boy. This was a late tribute to her mother. This pregnancy also would break me emotionally. With my wife in labor, and her friend Amber and I sitting there helping her through it, she finally needed an epidural. Once the epidural was in, her blood pressure dropped considerably. She lost consciousness. The epidural was set too high and completely numbed my wife. The babys heart beat was dropping. The doctor who put in the epidural went home and no one had the authorization to turn it off. A brief argument ensued in the delivery room as doctors and nurses flooded it. I was scared. Was this it? Am I going to lose my wife to this? Dr. Pimentel told the nurse to turn off the epidural. The nurse argued back because he did not have the authorization to. It had been locked by the nurse. The Dr. said that it was her patient and that he didnt care. It was like a scene from ER or Greys Anatomy, and I was living it. Scared. And my wife was deep in labor.and unconscious. After the epidural was shut off, the effects lessened and she woke up. She had no idea what happened, asked if Jordan was born and I said no. How do I tell her what had happened? I dont know. That was the closest I had ever come to losing my wife. And the baby hadnt been born yet. They prepped a room for an em ergency C-Section.

They were going to give her one last chance to deliver naturally, without drugs, without the epidural. She chose to. She pushed for about 20 minutes, and then, at 5:40 at night, Jordan was born. This was it for me. I couldnt stand the thought of losing my wife. I couldnt fathom losing my best friend. I didnt want the chance of any of my children being born with defects. The first kid was ok, the second kid was a nightmare, and the third kid almost killed my wife. I was done. I promptly scheduled my vasectomy and got it done. Worst physical pain I have ever felt. As any man dreams of, is to wake up one morning and have their man parts double in size. Well, the dream came true for me, and I couldnt walk for a week. Ironically, my vasectomy was done by the same doctor who earlier in the pregnancy upset my wife about removing the IUD without having a sonogram done to determine where the fetus had implanted.

First picture of my kids all together.

Part Four: Now, where do I go from here? Im finishing this up for the night. Its 2 in the morning, Im scared. Im upset. Just yesterday I had a thought and I proposed it to my wife. I was afraid to say it at the table. Jena sat right next to me on the right. She held my iPod in her hands. Played with it like she owned it. I texted my wife from 2 feet away: Me: Not looking forward to the day Jena figures out shes different. Lacey: Me neither. My new years resolution for 2012 was to make people happier. Everyone, including my wife, my family and my friends. I have all these issues in my life. All these problems, and Im supposed to help someone else out. Im supposed to bring happiness

to those who are unhappy. Im trying. I still need answers. I still ha ve unanswered questions like how Jordans kidney is doing. We still dont know what to call Jenas Syndrome. Or what long term effects Jenas Syndrome may have on her. Right now, that is the name for it. The doctors dont know. She has parts of one syndrom e, and parts of another, and parts of even another with no previous linkage between any of them. Her chromosome tests have come back negative and normal. Theyve ruled out Turners syndrome. Its likely a combination of Noonans syndrome and Cardiofaciocutaneous syndrome. But the problem with that is that it doesnt explain her webbed neck and the coarctation of her aorta. This is a short list of symptoms that she has: Webbed Neck- pterygium colli Short Stature-Jena is in the 10th percentile and lower for her age Coarctation of the Aorta Shield Chest Low Hairline and low set ears Short metacarpal IV Clumsiness, poor coordination Atrial Septic DefectThis is the only traceable symptom back to either side of the family. Laceys mother had an ASD. This is also referred to as a hole in the heart Epicanthal folds with very minor hypertelorism.

Most of those are phenotypes from Turners syndrome. Some are not. Turners has been ruled out due to extensive genetic testing. Both Lacey and I have a normal genetic structure. It is most likely a new mutation of the genes. My daughter has her own syndrome, named for her for the time being. Isnt that cool? I call it Jenas Syndro me. Its even caught on with the doctors in Iowa City. The next time she sees her geneticist is in April. Maybe well have some answers then. I can only imagine what that day is going to bring to my heart when Jena asks me why she has a webbed neck. Or wonder why shes short. Shes going to probably be in kindergarten when the other kids look at her oddly. She wont know the difference, and shell make friends just as she has so far. Shes been doing exceptionally well in dance and baseball, she wants to try gymnastics. I think, being of short stature and of size, that shed be really good at it. But how do I explain it to her? How do I tell her that shes different? How are other kids going to react to her? I think my daughter is amazing, although I am biased a bit because Im her father, but I cant help but think of this cruel world and how shell live in it. How shes going to deal with it at school. Shell persevere, just like her mom and dad. I think that shell be in 2nd or 3rd grade before anyone sees her as different, but Ive been wrong. This past year, I took the family to the Brickyard 400 in Indianapolis, and a young girl boldly asked my wife what was wrong with her. That was a new experience. Looking at the notes from the doctors, she probably will be on a growth hormone from grade 4 and until she graduates. She will also probably be fertile, and not be able to have kids. Thats heartbreaking in itself. How am I going to explain to my daughter that she is special. Or broken, whichever way you want to look at it. Jena, I know you want to have children someday,

but your physiology wont allow it. Easy enough to type, but telling her? This is the same girl that puts her hands on her hips and gives me an attitude whenever I want her to go clean her room. If she puts her mind to it, she can do it. She might be able to have a kid if she wants one bad enough. She already carries around a doll and babies Jordan. She can always adopt, I know, but there is something magical to having your own kids. Bonding with them for 9 months while they are in the womb. Bonding with your wife for 9 months as she pukes every morning, eats pickles, and grows in size. Even the sex becomes uncomfortable at the later stages of pregnancy. For me, and its my opinion only, is that adoption is like comparing going to the store and buying something, as compared to building it from scratch. There is heart and soul and energy put into the first nine months before birth. But thats another story and another topic. So, what to do you tell your little angel? I mean, if I dont know what she has, how am I going to explain it to her? Ive Googled it, Ive researched it. No answer. For those technically inclined, were looking at a possible mutation in the PTPN11, SOS1, or KRAS genes. The answer lies thereor so were told. So, here I am, 2:20 in the morning, and yes, miracles do happen. I have three of them. Sometimes you go through heartache and grief and sorrow just so you can treasure the good times even more. I remember back to when Jeffrey was born, and how confused I was being a father for the first time. I was living with my wifes mom and aunt, having chosen to move out of my parents place. I was 20 years old when I got married. I was a lost person. I remember clear as day all the decisions and emotions that I had. Do I love her? Do I want to marry her? How can I support this kid when I can barely support myself? I dont know how I made these decisions. Gods hand was

definitely guiding most of them. Now, I embark on a new journey. I have three kids, an amazing wife, and I have to guide them through life. In April, I start working at a brand new store that I get to help open. Ive only opened a new store once before at a Hy-Vee. That only lasted 4 weeks. Im excited, ready to do it. Im also ready for Jena to start school. Shes so intelligent. Shes already correcting and helping her older brother with his schoolwork. She can count pretty high, she can talk and convey her feelings, she can reason with you on things. Shes also supposed to have a mild retardation. She is supposed to have learning disabilities. She is also supposed to be clumsy and uncoordinated. Shes very intelligent, but she is clumsy. She can trip over herself and fall down from standing straight up. Its the silliest thing. Just another thing that makes her amazing. As with any type of learning disabilities, you can work hard to overcome them. I push her to learn whatever it is she wants to learn. Give her an Apple iPad and she will show you how to use it. I dont mean she can do simple things, she almost bonds with it, and her little fingers fly over it with such precision. I was stuck trying to do something on it one night and her little voice goes, here daddy, all you gotta do is this, mimicking how I talk and teach her how to do something. Target Corp. is running an ad campaign featuring a child with Downs syndrome. What if the reason why Jena is different is not to challenge her and it isnt to challenge my wife and I; what if it is to challenge the world? What if all these different syndromes are to challenge the world and how it deals with people that are a little bit different? Surely, were not all the same, some of us are more different than others, and sometimes how different you are is the difference between being normal and being exceptional. Look at how different the icons of our lives are different than the rest of us. Im not talking about any of the Kardashian

sisters, either. Im talking about Albert Einstein, Martin Luther King, Jr., Steve Jobs, Bill Gates, Mother Teresa, and of course, Jesus Christ. These people were so different; they challenged the world to accept them. And we did. I personally own an iPad, an iPod Touch, and my wife has the newest iPhone. What a revolutionary product. I run Windows on all of my pcs, except for my laptop, which has a tri-boot of Windows 7, Mac OSX, and Android. I grew up with some of my best friends whose skin color happened to contrast mine. And of course, Albert Einstein is one of my heroes. The man wore the same clothes 2-3 days in a row, forgot where he lived sometimes, but due to his careful calculations, we were able to harness nuclear energy. And Jesus? Religious or not, factual or not, real or not, Jesus Christ changed the face of our world. How different was he? Surely, in todays day and age, if theres a guy wearing a tunic proclaiming to be the son of God, were bound to lock him in a padded cell and toss the key. But this man changed the world. What about the Wright brothers? Thomas Edison? What chance do you think that my daughter will change the world? Probably not on a scale as grand as these folks, and surely we cannot compare her to Jesus Christ, but Im sure that as different as she is, she will impact the world in a great way. Shes already impacted me and the way I live, and shes already impacted the small amo unt of people that have met her. Just wait until she gets a mind of her own, and gets out in the real world and meets life with the full force of her personality.