Jackson Graduates Preschool!

It has been a month since my last post. I have said this before, but most days I think about blogging something. Often, it may not be appropriate (too much information) or just plain boring for you to read!
Last month we were all on antibiotics. Jonathan came down with something. He typically gets a fever every two weeks for some unexplained reason. It is usually in enough time to knock out two events - Bell Center and Hand in Hand or church and a birthday party. However, his fevers are not high and cease within hours - very odd. The fevers have started coming every three weeks or so instead. I went to a shower to Atlanta the next day and felt sore all day but assumed it was from an exercise class. On the way home I was switching the heat and AC and knew I had fever. I got home and felt like I had been beaten with a stick. I could not comfortable and kept taking baths to soak out the soreness. I know Jamie thought I was crazy.:) That is the worst I have felt in a LONG time, if ever. I found Jamie on the floor of the bathroom Sunday. He had it, too. I took myself to the doc in the box Sunday. I asked them to swab for strep which came back negative. Jamie went to the doctor Monday and got a shot in addition to antibiotics. He felt better soon after. I took Jack to the doctor Tuesday. The doctor checked us both out. He had strep. I had a lump on the side of my neck that the doctor said would alleviate as my sinuses drained. Thursday I got a call from the doc-in-the-box - my labwork now read that I did have strep. They gave me a big shot. By Friday I felt like a new woman. I felt like such a wuss all week because each day I would expect to wake up feeling better and would not. I had convinced myself that I was dying a slow death and no one could diagnose what was wrong. :)
My sister came to visit at the beginning of May to attend a program at our church called Secret Church. She went Friday night and Jamie and I attended Saturday. It is supposed to simulate teaching he does in underground churches throughout the world. We had about five and a half hours of teaching - it was incredible! Our church's website should have it online soon: www.brookhils.org.
Thursday was Jackson's graduation. He came out in line with his classmates. They all had graduation hats on they had made. They lined up and sang "America the Beautiful," "The Star Spangled Banner," two songs in Spanish, and recited the Pledge of Allegiance. They also recited a poem and sang a song about the alphabet. Then they received their "diplomas." I am sad to see this year over - it was absolutely wonderful. Each child had art work posted - their own versions of Picasso, Monet, and other artists. They each did a family portrait on a canvas. He was so proud!
This week he started coughing at night. Friday night Jamie was up with him most of the night. I found them both on the couch Saturday morning sound asleep at 5:45am. When I returned Jonathan was on the end of the couch talking up a storm and Jamie was fast asleep. Jamie took Jonathan to the doctor and got steroids. Jackson and I went to a birthday party at a park with the best playground equipment I have ever seen on a public playground. It was awesome!
Now, this week summer begins for me and the boys. I must become the entertainer. We shall see how it goes!
Julie:)
juliewarren@mindspring.com


Boys watching a movie so Mommy can cook/unload dishwaser/conduct business. The TV was not working so we went with the portable DVD player. How spoiled are we?

One day this child will each chocolate without creating a beard in the process.

Jackson loves the camera. Wonder where he gets that?

Jackson has his helmet, swim googles, and gardening gloves on - his version of a racecar driver. This guy puts together the funniest outfits!

This is the banner for Jackson's graduation on Thursday. He is officially no longer a little boy!

The kids made their own graduation caps. At this time, Jackson's pants came unclasped. Throughout the whole program, he pulled his pants from side to side, attempting to hitch them up while wearing a crooked grin. It would not have been so bad except he was the loudest child up there and drew enough attention to himself already. Jamie and I could not decide if we should run up and help him out. We opted to let it "fly."

Jackson's hat kept falling down as well. He was quite uncomfortable but that did not keep him from singing his heart out. He practiced at home for weeks! See how he is pulling his pants up?:)

Friends came over for dinner last night. We tried to get a group picture of the kiddos but they were exhausted and uncooperative. We had a blast with Allie and Brant!

Jackson Turns Five

Jackson turned five on April 15 - a dreaded day for many but a beloved day for us. Jackson's birthday was last Tuesday. Jamie was gone on business a couple of days before so over that weekend I took the boys to a track meet at Mountain Brook. We ran out of gas on the way there (oversight on my part:)). After Pops rescued us, we headed to the meet. I had been at the same track meet five years earlier on April 12 (it was April 12 this year, too). I explained to Jackson that on that day I was coaching. People would come up and say, "When are you due?" and I would respond with, "Today." He was summoned three days later - he thought that was neat. Then he kept asking when we could leave.:)

We had a party with family while Jackson's cousins were here and then had a party with friends the next week. Enjoy the photos and movies!

Julie:)
juliewarren@mindspring.com

Birthday party invitations.


Jamie wrestling with the boys and the cousins.


Jackson, Eric, and Emma watching TV.

Jack got Star Wars' sunglasses from his cousins!

Jackson Jawa - Jackson dressed up in an old Star Wars' costume of Jamie's at Nana and Pops' house.

Jackson got a Luke Skywalker costume for his birthday.

Jackson and Jonathan dressed for church.

This boy loves Star Wars.

Jack's birthday - he turned five!

Jackson and Jonathan playing with light sabers.

Happy Birthday To You, Jackson!

March Madness

I think all families must live like this - hanging on as event after unplanned event happens. It is a wild ride and as a friend of mine once said, "You mean life is happening?" That put it all into perspective for me - life happens and you adjust.

This month is the first time since the first of January that Jonathan has seemed okay when I dropped him off at childcare. He attends twice a week at a place called Hand In Hand. They integrate typical and non-typical children and won't let Jonathan get away with things. They make him walk (he pathetically will lift his hands up, begging to be carried). He is asked to eat what everyone else eats (he refuses to eat most table food). He is not treated differently and I appreciate that. He does not appreciate it in the least.:) It has been agonizing for me, dropping him off, knowing he is upset. He swats at me to tell me he is angry. Jackson used to get very upset going to Mothers' Morning Out as well and I would think, "Is this for him or me?" Jonathan's situation is different because he will learn skills from his peers more readily than his teachers. It is imperative he is in an environment with typical peers and with teachers who are comfortable with his needs and will not indulge him. So, he seems to be adjusting and I am so grateful.

Thankfully, Jackson continues to love school. His school is incredibly creative and he loves that. He likes to get out and play sports but not on a team. He told me he doesn't like the rules.:) He is such an encourager for Jonathan - he helped Jonathan say "bowl" on the way to the beach. Jackson was so proud!

We have spent so much time in doctors' offices that, for fun, Jackson asks me to tell him what all the body parts are displayed on the charts on the walls and their relative functions for the body. The kid may become a doctor just because of so much exposure at a young age. We went back to the pulmonologist for a follow up after the sleep study. Jonathan had a barium swallow which determined that he did not aspirate while eating. We were trying to figure out why he is constantly congested - it seems it is simply because of his smaller anatomy. That was the initial conclusion but we wanted to make sure it was not something else. When your kid coughs and has a runny nose year round, you want to help them any way you can. Another mother told me about "Juice Plus" - some kind of pills or vitamins that kids eat to supplement their diet if they don't eat much in the way of vegetables. Apparently, it has really helped some kids stay healthy. We will try that next.:)

Jamie and I are realizing more and more that we cannot live this life by ourselves. Before, my perspective was that it was my responsibility to live in accordance with biblical guidelines as best I could. I viewed my faith as a book of rules and if I worked hard enough, I would build up a credit so that I was immune to hardship. Christ was my way to heaven more than in charge of my life. I see that is completely faulty thinking now. I understand now that Christ has to do it all. When I hit a tough moment, I recognize it and call on the Lord to do it for me, to supply me with the strength and wisdom to survive the circumstance. It is neat because my faith is finally just that - faith. Always before it has been a book of rules - too complicated.

I got pregnant in January and I heard the heartbeat at six weeks. I never felt the same symptoms as with the boys. After the miscarriage last fall, I didn't commit as much emotionally either. Upon hearing the heartbeat I told the doctor I was really surprised to see the baby. The doctor was confident this pregnancy would move along just fine but I was not apprehensive - my gut said things were not so secure. Two weeks ago, I miscarried again. It was a tough day - Jamie was headed out of town and I didn't tell him until that evening. I cried most of the day but didn't want to tell anyone until I told him. Even though I was sad, this experience was easier than last fall. I do not feel responsible and this time my perspective is different about God's role. Last time I thought He was sending me a message and if I didn't root out the sin in my life (I didn't know what that might be), we would have another child with special needs. As I type that, I know it sounds crazy - it revealed my heart and how I was making up my own rules instead of believing in the God of the Bible. My view of Him was that He was a punishing God. But after much soul searching, I realized I had concocted an unbiblical view of God that fit in with my rules. I realized that He was not punishing me or waiting to zap our next child. I was so relieved.

We don't know if we will have more children. We were shooting for me to give birth before 35, trying to beat the odds. I feel really peaceful because, in my mind, it has been up to me to follow all the rules to keep a potential child healthy and typical. God is completely capable of giving us a typical, healthy child at 40. He may give us one that has special needs. He may not give us any more. Whatever happens does not catch Him by surprise. Whatever happens, the outcome was intended to be just that and I have found real peace. I still have a tough time on occasion but I am healing.

On a positive note, Jackson will turn five in two weeks and we cannot fathom our little boy heading to kindergarten in the fall. I think he wants to be a baby again, to get attention. He often regresses and imitates Jonathan's walk and talk. He even put on a diaper last week. Nice.

I have attached recent pix below. Enjoy!

Julie:)

juliewarren@mindspring.com

Jonathan loves cookies. He will do whatever it takes to get to

them, or even to the cookie dough.

Daddy and Jackson cooking together. Jamie is wearing an apron Jackson got at a pizza
party.:)

Jackson at his class' Easter egg hunt. They all made their own "baskets" out of
shoeboxes, fabric, and ribbon.


The Easter bunny showed up at the party!

The boys on our family bike ride at the beach. Jonathan actually wore his helmet

this year without crying. Jackson was able to ride for longer stretches. Much

better experience this year!

Boys on the green, taking a break from the bike ride.

We met up with the Cundiffs at the Sugar Shak one evening.

Mommy burying Jackson. It was rather cold on the beach.

Cool dudes.

I was in the kitchen and heard Jonathan "playing the piano."

Little did I know he was climbing it.

Monkey boy.

Rambling - Mercedes, Guild Gala, Constant Congestion

Again, many thanks to those of you who gave to the marathon a few weeks ago. We had two teams running for Jonathan and you raised almost $18,000 for the Bell Center! We won the fundraising contest!!!

Jamie and I went to Colorado two weeks ago. We kept the boys out of church and school the whole week previous to insure we had done everything within our power to keep them well. They remained healthy while we were gone.

The flu and stomach bug have been running rampant all over the nation and it is no different here. On Tuesday of last week I commented to a friend that we had avoided the flu and stomach bug successfully thus far. That night Jonathan woke up vomiting. I wished that I had never uttered those words. Thursday rolled around and my stomach hurt but I didn't think much of it. Jamie started feeling poorly Thursday night, hurt all day Friday but worked anyway, and then I was out of it Saturday. Saturday was the night of the Guild Gala, the other annual fundraiser for the Bell Center. It is a ball where everyone either dines at the Birmingham Country Club or in someone's home who is hosting a theme dinner. Everyone convenes at the club for dessert, music, and an auction. We missed getting all gussied up.:) Hopefully we will make it next year and I will remember to keep my mouth closed.

This doesn't seem related but just wait...

Jonathan has had constant congestion for as long as I remember - it seems since he had heart surgery. It is probably not that long but I have quit taking him to the doctor for it. Everytime I go, the pediatrician, allergist, or ENT tells me his congestion will pass and that it is not deep. Occasionally, if fever accompanies it, it registers as an infection, and antibiotics are prescribed. The congestion supposedly will clear up by the time he is three years old - when his anatomy develops more and doesn't clog so easily.

After months of Jonathan waking at 5am, coughing for a couple of hours unless sitting vertically, I had the idea that perhaps a trip to the pulmonologist was in order. I consulted with the pediatrician, who agreed. At this point, we had tried inhalers in case the congestion was linked to asthma, allergy testing, reflux meds, and antibiotics. So, we visited the pulmonologist about two weeks ago. He immediately suggested Jonathan do a sleep apnea study - Jonathan's oxygen levels were not optimal. The doctor wanted to do the study to determine if he indeed had sleep apnea and to see if his oxygen saturation levels (sats) changed at night. The conclusion was that Jonathan did not have sleep apnea and his oxygen levels actually both increased and decreased at night.

The next step was to take antibiotics for a week to see if that healed up the congestion. If it did, the doctor thought perhaps that would indicate infected adenoids. If it did not work, his heart might not be working properly. We also were slated to do a modified barium swallow. At the next visit, Jonathan would eat things with barium in them while a moving x-ray showed if he aspirated while he ate.

Jonathan took the antibiotics and readied for the next appointment. However, the vomit episode occurred the early morning of the visit so we had to reschedule. With the antibiotics in his system, the congestion ceased. We arrived today for the appointment and barium swallow. Jonathan was not supposed to eat two hours before his test. I had brought along food for Jonathan in the event he did not eat what they offered him. He spied the food and begged for it. I had been thinking and obsessing about this testing all week and oddly enough, totally forgot he could not eat. I finally let him have a snack and then almost lost it - what was I doing?! We had labored so hard to get the timing right and here I was letting him eat! I was upset because I thought we would have to reschedule again and I had been praying for his health all week to remain good despite his exposure to other kids. Oh, I didn't want to have to come back...

I found comfort in the fact that we were in the waiting room with Jesus and Enoch. A mother kept saying, "Jesus! Come here! Enoch, don't do that! Jesus, put that down!" It was comical! I was glad Jackson was not with us - he definitely would have had questions. We have gone to so many doctor appointments now that I wonder if Jackson may go to medical school. After becoming bored with me and Jonathan at these visits, Jackson begins inspecting all the equipment in the room and asks me to tell him about all the charts on the walls, pretending to understand exactly what I am saying.

I felt overwhelmed today with trying to coordinate the appointments, making certain we checked this one off our list so we could rule out Jonathan's lungs, and trying to shield Jackson from it all by getting him a babysitter. Then I realized, as I mentally complained, that we are fortunate to be close to a wonderful medical facility. As I see the other patients and their parents, I am grateful for our situation.

What is neat for me personally, is that I don't feel like a victim and don't see Jonathan as one anymore. He drives me nuts with his antics but I am thrilled he is moving, curious, and expressing himself. I tire of the incessant doctor appointments simply because I long for Jonathan to enjoy good health. I do not resent the DS - in fact, selfishly, I would not trade it. Having Jonathan's diagnosis in my life has made my relationship with Jesus real and not academic. I am living my faith rather than simply studying it.

Back to today's doctor's visit... The conclusions were that if Jonathan encounters more respiratory problems, he should take antibiotics more quickly to combat them instead of waiting a week or two. The doctor explained that kids with DS have weaker immune systems and are more susceptible to respiratory illness. This appears to be Jonathan's issue. The OT who administered the barium swallow told me that she did not see any aspiration or reason to believe his eating was causing problems. Good to know.

That, in an unorganized fashion, has been the last few weeks of our existence. Thanks for letting me share!

Julie
juliewarren@mindspring.com

MM Total, Valentines' Day, Sleep Study, Skiing

Josh, Joseph, and Jess all ran on the Warren Averett team, averaging seven-
minute miles, coming in second overall as a relay team, the first Bell Center relay
team. Overall, we raised over $17,000 and we won first place in the Bell Center
fundraiser!
Jackson and his friend, Natalie, at their Valentines' Day party. Jackson told me he
will be marrying Natalie soon.:)
Jackson decided to wash dishes for us one evening.

Jonathan went to see the pulmonologist a few weeks ago to
get some advice on a constant cough. The first step was to
rule out sleep apnea.
Jonathan got wrapped up like a mummy!

This was reminiscent of the heart surgery.

Jamie and I went to Breckenridge to ski a few weeks ago. No kids!

Our instructor, Ruxie. She was from Romania and very patient.

Jamie and I on the mountain.

Me and Jamie.

Stopping for lunch.

Jamie ate healthy, I ate junk!

Mercedes Update

Last Friday, Jackson and Jonathan got the Mercedes Marathon weekend started by racing at the Bell Center. There were about ten heats - they started with children "racing" in strollers. Then, those children who could walk in walkers raced - one child had her walker decorated with red and white feather boas - it was great!

Jackson tried to show Jonathan what to do beforehand but little brother was not interested. Jonathan was in heat eight. He was not excited - he had been having fever for several days previous. We figured out he was cutting all four molars at once. Whew! When Jonathan's race started, he clapped for the other kids. We convinced him to get going himself. He loves men right now and tried to run for a random man on the side. He finally made it to the end - what is neat is that he is walking so well on his own and did it alone!

Jackson ran in the sibling race. He told me that if he ran against his friend, Cate, he would slow down for her. I said, "Oh, I'm sure Cate wouldn't mind if you tried to beat her, Buddy.":) He just loved being there and being a part of it all. He is such a wonderful, patient brother - God could not have gifted us more with this guy!

Sunday was race day for the adults. I ran the first leg. Jim, Jamie's dad, ran the second leg. Brooks ran the second leg and Courtney ran the third portion. Drew was our alternate. Since everyone arrived healthy, Drew ran with Courtney. Drew had been up since 3:30 or 4am, helping to set up water stations and cones throughout the course. Brooks, Courtney, and Drew are all friends from our Small Group at church. It was so wonderful to have them involved. We all wore our numbers on the front and Jonathan's picture on the back. Courtney turned, pointed to Jonathan's picture, and said, "This is for you, Buddy!" Jamie ran the last leg. As he turned to take off, his iPod malfunctioned. He would be running for 7.5 miles. He decided not to get upset and sang the songs to himself and prayed!

Our friends from college, Wade and Clarke, both had every intention of coming. Both had trained to run the half marathon but neither could race as a result of injuries. Wade pulled a ligament that was too painful to run on after mile two. Clarke had a puncture from a rusty nail that caused his leg to swell to where he had to wear a brace. We simply appreciated them training and trying to get here! We hope to see them next year!

We all ran better than we hoped. We finished the marathon in four hours and fifteen minutes. We showed up and were healthy. I had moments of trying not to cry. I have said it before and I will say it again. I have been racing since I was 14 and how awesome it is to race for something so important as this!

The WAKM team that ran for Jonathan came in second overall in the relay teams. They finished the race in just over three hours - 3:09!!!! They were incredible. To race for them, one must average seven minute miles - neither Jamie or I qualified for that! Thanks to Josh, Steven, Jess, Joseph, and Ann! Josh, Steven, Jess, and Joseph work at WAKM. Ann's parents work there - she is a seventh grade student at Mountain Brook Junior High - whoa!

Those of us who ran for Jonathan are currently in second place in the Bell Center's fundraiser by only about an $800 difference. YOU CAN HELP US CHANGE THAT! Our deadline is Monday, February 18. We would love to win with your help so please give by logging on to www.firstgiving.com/jonathanwarren. If you would prefer to write a check, please make it out to The Bell Center and send it to: The Bell Center, 1700 29th Court South, Homewood, AL, 35209.

Here are some pictures we took at the Bell Center race and at the Mercedes. Enjoy!

Jackson getting ready to race. He wore his Bell Center shirt and a
picture of Jonathan that said, "Running for Jonathan."

Here Jackson is trying to get Jonathan ready for his race.

Grandpa, Jackson, and Grammie on the sidelines waiting for the

race to begin.

Cate and Jackson getting ready to race for their siblings!

Molly (Cate's sister) and Jonathan, at the starting line.

Molly loves Jonathan! As far as the parents are concerned, Molly and Jonathan

are betrothed.

Jim and Betty (Nana and Pops) before Jim ran the second leg.

Jackson and me after I ran my leg. Grammie and Jonathan in the

background.

Brooks ready to go!

Brooks' son, Brooks:). He wore his daddy's racing singlet and medal to school the

next day. He told his teacher that he ran in a race for his friend's brother,

Jonathan, and that he won the race. Sweet boy! He was so proud and excited!

Courtney, Jonathan, and me before Courtney ran her leg. Drew ran with her as well

(where is he?). She ran even though she was four and a half months pregnant!

Grandpa, Jonathan, Nana, and Jackson, waiting at the finish.

Pops (Jim), Julie, Jonathan, Jamie, Courtney, and Brooks. We neglected to get a

picture with Drew. At that point, Drew was babysitting Jackson and Brooks so we

could take a picture. Drew had been up since 4am helping to set up water stations!

This is Jonathan starting his race...
Jonathan crossing the finish line...
Jackson racing for his brother...

Pictures and Personal Epiphany

My miscarriage in November was the catalyst for a personal discovery. I had wrestled with and convinced myself, over the last two years, that I was responsible for Jonathan's diagnosis. I began to wonder in earnest if God was punishing our family because of some sin I had committed of which I was unaware. If I didn't discover it soon,I feared what I might bring upon our family.

Friday night, I met up with my old Biblestudy group and asked them if they thought it was possible Jonathan's diagnosis was a punishment. That was met with a resounding "no!" and Romans 8:1, that there is no condemnation for those who are in Christ. They encouraged me to identify the lies and to quit believing them. This discussion gave me a ray of hope.

Sunday, our pastor preached on being desperate for the Holy Spirit this week. We read Exodus 33 about Moses meeting with God and experiencing God's glory. Our pastor challenged us to fast on Tuesday and to pray that God would show us as much of His glory as we could handle. I began praying that moment for God to reveal His glory to me. I found myself drawn to Jonathan more than usual and started to see our situation in an entirely different light.

Monday night I started the process of beginning Jonathan's baby book - I printed out pictures from the first six months of his life. I printed out pictures of him as a newborn (http://thefourjs.blogspot.com/2005_11_01_archive.html), in his "crib" in the NICU under the blue lights, coming home with a heart monitor on, prep for heart surgery, what he looked like immediately after his surgery (http://thefourjs.blogspot.com/2006_02_01_archive.html), his staples from the surgery (http://thefourjs.blogspot.com/2006_03_01_archive.html), his chest after the staples were removed, and pictures of him totally healed from his operation.

After praying constantly, "Lord, show me Your glory, show me Your glory, show me Your glory," I truly saw the photos for the first time. I realized that God had been showing me His glory all along - I was simply too blind to see it. Jonathan should not have survived his first night here - a nurse just happened to notice him turning blue. He was jaundiced, but recovered. He could not maintain a warm body temperature for days but finally did. His lungs would not keep his oxygen at safe levels, but they eventually did. He could have died in heart surgery but he didn't. Jackson could have resented the focus on Jonathan but he didn't - he kissed him every chance he got and continues to help as much as he can. This situation should have made our marriage harder but it has made it so much better.

Looking back, I am ashamed of how I responded to the Lord in November of 2005. Grief for what could have been was fine - lashing out at the Lord was a mistake. He was in control and could be trusted - I had convinced myself otherwise. Bringing Jonathan's diagnosis into our lives has been the best refiner of my faith and I could not be more thankful. I realize that Jackson, Jonathan, the miscarriage - all of it - is in God's hands. His purposes cannot be thwarted and I can relax. I am simply thrilled that the Lord has not given up on me and continues to pursue a personal relationship with me.

Seeing His glory,
Julie
juliewarren@mindspring.com


Jason, Gracie, and Jonathan.
The Cousins.

Julie and Noah Bratcher.

Emma holding Jonathan while watching a video.

Jackson and Eric playing Emma's princess game.

Jonathan got a soccer ball for Christmas.

No shower, no make up for Mommy, loving it.

Jackson requested a robot from Santa. Little did "Santa" know

that the robot says "DESTROY, DESTROY, DESTROY."

Voelkert family - Ryan, Em, Eric, and Emma.

Daddy, Aunt Emmy, and Jonathan look like the Doodle Bops!

Uncle Ryan.

Jamie, Julie, Jackson, and Jonathan - not sure why Jonathan is still

in his PJs and we are not...

Pops and Nana.

Jackson getting his Transformers.

For some reason, Jonathan likes wearing this mask around the

house.:)

Jackson at the park with us and Grammie. He hates wearing a helmet.

New Years' Eve with Linden, Ashby, and Phillip.

Julie, Kasey, and Julie at the Cundiff house.

Hard to explain this one - Joel told us that this is how all the

Hollywood types pose so they don't look like they have a double

chin... supposed to be more flattering...

Again, Jonathan is at Jackson's mercy. Jonathan does this when he hears "we lift

up our hands and pray" on the iPod.

Jackson and Jonathan "playing the drums."