Enjoy the pics. Jamie
Friday, January 27, 2006
Recent Pictures
I thought I'd publish some recent pictures. If you haven't read it, please scroll down and read the post about the Mercedes Marathon. It's really cool what the team from Warren, Averett, Kimbrough, & Marino is doing.
Enjoy the pics. Jamie
Enjoy the pics. Jamie
Wednesday, January 25, 2006
Mercedes Marathon
The Mercedes Marathon is a race run here in Birmingham every February. This year it is on Sunday, February 12. I am running as part of a relay team on behalf of Jonathan in an effort to raise funds for The Bell Center. Many of you have asked if you could help us. Many of you have prayed for our situation, some have brought meals, and some will donate blood for his surgery. Another way you can help is to donate financially to the Bell Center in honor of Jonathan. You can do this online by going to http://www.firstgiving.com/wakm. If you do not care to give financially, please continue to keep us in your prayers. You might want to offer up a prayer for me on February 12 ... that I do not pass out! I have not trained adequately and am still experiencing some post-partum discomfort. Given the fact that I have run for 18 years of my life, I feel confident I can complete my leg of the race - just not very quickly.:) And, there really is no need for any more drama in our lives - like me collapsing along the way... Ha!
When Jonathan was born, one of the first contacts mentioned was Betty Bell. Frankly, from the perspective of a parent with special needs, she is a godsend, a saint. She has devoted her life to helping children with developmental delays. I cannot tell you how much hope and encouragement I receive from taking Jonathan to the Bell Center twice a week. Every time we go, a PT, OT, Special Educator, Speech Therapist, or Nutritionist works with him for an hour. Not only does Jonathan benefit from the therapy, but I receive education as well as encouragement. The people there are so loving and remind me that Jonathan is a baby first and happens to have Down Syndrome second - he is a child to be cherished and Down Syndrome does not have to define him.
Betty came to visit us in the hospital. We were so upset and discouraged at the time. She was positive, upbeat, and supportive. She told us about the Bell Center and her history as a nurse. She gave us an idea of what to expect with Jonathan and was a great listener. She provided hope when we did not have any.
My dad used to run in the neighborhood and I would go with him. My brother and I would run in races at my dad's company picnics. I have always loved running. I went out for track my eighth grade year in middle school. I started running cross country in tenth grade. I wanted to stick with sprints in track, but my coach told me that the best fit would be long distance. How I hated to hear that! I dreaded those long, hard, grueling work outs! However, I did fit the bill since I had more endurance and heart in long distances than speed in short distances. I was so competitive that I would train on my own in the summers and run with the boys during the season to push myself as hard as possible.
I remember one race we ran at Furman. Toward the middle of the race, I started falling further and further behind. I had been feeling really tired and could not understand why my body would not cooperate with me. I kept pushing and finally collapsed. I got up and tried again. I fell down. I kept trying to reach the finish line but could not quite make it. I finally did. I would find out later that I had been in oxygen debt as a result of exercise-induced asthma. Selfishly, my true concern was finishing number one on my team, not so much beating the other teams. I did not want to lose my status on my own team. I had missed the point of cross country - running as a team, not as an individual. That was how competitive I was. The remainder of the season was spent battling this fatigue and I never quite peaked in my "running" career.
I continued to fuel my passion for running through coaching in my first year of teaching. I had the privilege of assisting my high school cross country and track coach. I loved it! After teaching a few years at Mountain Brook, I was given the opportunity to coach again. I still miss it terribly to this day! Since high school, I have continued to exercise by running. I would either run on my own or with the runners I coached. However, in the back of my mind, the fear of pushing too hard was always present. I ran workouts, competed in road races, etc. but my motivation was purely selfish - stay in shape, don't lose face, etc.
We have an elliptical machine in our basement that I use to train on when I cannot run in the neighborhood. I often exercise while reading or listening to music with Jonathan in the swing next to me. Just thinking about getting to run on his behalf gives me a thrill and so much energy! I feel so excited to run with real purpose, for someone other than myself. I can say this time I truly do not fear hurting or pushing myself too hard. In fact, I almost welcome it. I cannot wait to hurt, to push myself, to feel the blood pumping through my veins. We have been through so much and it has put my fears into perspective. I will not be running for myself - to stay in shape, prove a point, improve my time. I am honored to run for my son - to raise money for an organization that helps individuals "peak" in ways that are truly important. I want that for Jonathan. My running is no longer just about me.
Please join us.
Julie
When Jonathan was born, one of the first contacts mentioned was Betty Bell. Frankly, from the perspective of a parent with special needs, she is a godsend, a saint. She has devoted her life to helping children with developmental delays. I cannot tell you how much hope and encouragement I receive from taking Jonathan to the Bell Center twice a week. Every time we go, a PT, OT, Special Educator, Speech Therapist, or Nutritionist works with him for an hour. Not only does Jonathan benefit from the therapy, but I receive education as well as encouragement. The people there are so loving and remind me that Jonathan is a baby first and happens to have Down Syndrome second - he is a child to be cherished and Down Syndrome does not have to define him.
Betty came to visit us in the hospital. We were so upset and discouraged at the time. She was positive, upbeat, and supportive. She told us about the Bell Center and her history as a nurse. She gave us an idea of what to expect with Jonathan and was a great listener. She provided hope when we did not have any.
My dad used to run in the neighborhood and I would go with him. My brother and I would run in races at my dad's company picnics. I have always loved running. I went out for track my eighth grade year in middle school. I started running cross country in tenth grade. I wanted to stick with sprints in track, but my coach told me that the best fit would be long distance. How I hated to hear that! I dreaded those long, hard, grueling work outs! However, I did fit the bill since I had more endurance and heart in long distances than speed in short distances. I was so competitive that I would train on my own in the summers and run with the boys during the season to push myself as hard as possible.
I remember one race we ran at Furman. Toward the middle of the race, I started falling further and further behind. I had been feeling really tired and could not understand why my body would not cooperate with me. I kept pushing and finally collapsed. I got up and tried again. I fell down. I kept trying to reach the finish line but could not quite make it. I finally did. I would find out later that I had been in oxygen debt as a result of exercise-induced asthma. Selfishly, my true concern was finishing number one on my team, not so much beating the other teams. I did not want to lose my status on my own team. I had missed the point of cross country - running as a team, not as an individual. That was how competitive I was. The remainder of the season was spent battling this fatigue and I never quite peaked in my "running" career.
I continued to fuel my passion for running through coaching in my first year of teaching. I had the privilege of assisting my high school cross country and track coach. I loved it! After teaching a few years at Mountain Brook, I was given the opportunity to coach again. I still miss it terribly to this day! Since high school, I have continued to exercise by running. I would either run on my own or with the runners I coached. However, in the back of my mind, the fear of pushing too hard was always present. I ran workouts, competed in road races, etc. but my motivation was purely selfish - stay in shape, don't lose face, etc.
We have an elliptical machine in our basement that I use to train on when I cannot run in the neighborhood. I often exercise while reading or listening to music with Jonathan in the swing next to me. Just thinking about getting to run on his behalf gives me a thrill and so much energy! I feel so excited to run with real purpose, for someone other than myself. I can say this time I truly do not fear hurting or pushing myself too hard. In fact, I almost welcome it. I cannot wait to hurt, to push myself, to feel the blood pumping through my veins. We have been through so much and it has put my fears into perspective. I will not be running for myself - to stay in shape, prove a point, improve my time. I am honored to run for my son - to raise money for an organization that helps individuals "peak" in ways that are truly important. I want that for Jonathan. My running is no longer just about me.
Please join us.
Julie
Surgery Date Change, Mercedes Marathon
Yesterday was a bit chaotic - Jonathan's surgery date changed three times. We think we have a final date: Jonathan will be admitted on Monday, February 6 and will have the surgery the next day, Tuesday, February 7. Please continue to pray for us - that God would guide the doctor's hands and give him wisdom, the surgery would go smoothly without any mishaps, we would be prepared for what Jonathan will look like post-surgery (all the tubes, etc.), we will keep things as normal as possible for Jackson, Jackson's state of mind, Jamie and I would be like-minded, we would rest well, etc. We so appreciate your prayers!
Five days after Jonathan's surgery, the annual Mercedes Marathon will be held here on February 12. Josh Reidinger, Steven Causey, William Dow, and Stacy Townsend compose the relay team from WAKM. They are running to fundraise for the Bell Center and asked us weeks ago if they could run in Jonathan's honor. They were gracious enough to allow me to join their team. Many of you have asked how you might help. Many of you have prayed for our situation, some have brought meals, and some will donate blood for his surgery. Another significant way you can help is to donate financially to the Bell Center in honor of Jonathan. You can do this online by going to http://www.firstgiving.com/wakm. If you do not care to give financially, please continue to keep us in your prayers.
When Jonathan was born, one of the first contacts we were given was Betty Bell. We called her and she immediately came to meet us at Jonathan's bedside in the NICU. At a time of personal emotional upheaval and uncertainty, she was positive, upbeat, understanding, and supportive. She told us her story and how her experiences eventually evolved into what the Bell Center is today. Frankly, from the perspective of a parent with special needs, she is a godsend, a saint. She has devoted her life to helping children with developmental delays. I cannot tell you how much hope and encouragement I receive from taking Jonathan to the Bell Center twice a week. Every time we go, a PT, an OT, a special educator, a speech therapist, or a nutritionist works with him for an hour. We are also finding that many people we know volunteer there as well - we had no idea! Not only does Jonathan benefit from the therapy, but I receive education as well as encouragement. The staff, volunteers, and other parents there are so uplifting and remind me that Jonathan is a baby first and happens to have Down Syndrome second - he is a child to be cherished and Down Syndrome does not have to define him.
I am thrilled to run in an effort to raise money for the Bell Center. It won't be about me. Please join us in any way you can!
Five days after Jonathan's surgery, the annual Mercedes Marathon will be held here on February 12. Josh Reidinger, Steven Causey, William Dow, and Stacy Townsend compose the relay team from WAKM. They are running to fundraise for the Bell Center and asked us weeks ago if they could run in Jonathan's honor. They were gracious enough to allow me to join their team. Many of you have asked how you might help. Many of you have prayed for our situation, some have brought meals, and some will donate blood for his surgery. Another significant way you can help is to donate financially to the Bell Center in honor of Jonathan. You can do this online by going to http://www.firstgiving.com/wakm. If you do not care to give financially, please continue to keep us in your prayers.
When Jonathan was born, one of the first contacts we were given was Betty Bell. We called her and she immediately came to meet us at Jonathan's bedside in the NICU. At a time of personal emotional upheaval and uncertainty, she was positive, upbeat, understanding, and supportive. She told us her story and how her experiences eventually evolved into what the Bell Center is today. Frankly, from the perspective of a parent with special needs, she is a godsend, a saint. She has devoted her life to helping children with developmental delays. I cannot tell you how much hope and encouragement I receive from taking Jonathan to the Bell Center twice a week. Every time we go, a PT, an OT, a special educator, a speech therapist, or a nutritionist works with him for an hour. We are also finding that many people we know volunteer there as well - we had no idea! Not only does Jonathan benefit from the therapy, but I receive education as well as encouragement. The staff, volunteers, and other parents there are so uplifting and remind me that Jonathan is a baby first and happens to have Down Syndrome second - he is a child to be cherished and Down Syndrome does not have to define him.
I am thrilled to run in an effort to raise money for the Bell Center. It won't be about me. Please join us in any way you can!
Julie
Wednesday, January 11, 2006
Heart Surgery Scheduled!
We have a date - the first of February. I will let Jamie write more later concerning the details. For now we are so grateful Jonathan will have one surgery as opposed to two.
So many of you are praying for us and we cannot thank you enough. We know that it is because of your prayers that Jonathan is progressing and holding his own.
According to the cardiologist's scales (and without the diaper), Jonathan weighed in at eight pounds and about 13 ounces. I think I heard the cardiologist say that he was not expecting Jonathan to gain that much. His weight gain was not great but better than expected. Since Jonathan has put on the pounds, the surgeon can go in and do both procedures necessary rather than a less invasive one first followed later by a more invasive one.
Yesterday I contacted a mom who had a child with DS on Christmas Day. She sounded great -in fact I marveled at how wonderful she sounded. She was in much better shape than I was when Jonathan was two weeks old. She said their peace probably had to do with the fact that they've been busy with their other two boys and Christmas but also that she was a speech therapist and somewhat familiar with DS. She made the point that they were not dealing with a heart problem, that their son was functioning as a typical newborn would. She suggested that we might be experiencing more stress and anxiety because of Jonathan's heart issues. I had not really considered that - I think she was right.
Initially, we had to drive back and forth to the NICU, secure childcare with my parents or Jamie's for Jackson, answer Jackson's questions of "Who is going to pick me up?", "Mommy, where are you going?", and so forth. I was more concerned about Jackson than I might have been simply because I was gone so much more than I would have been had circumstances been more normal. Then we have had added doctor visits, having to secure childcare again, and answer Jackson's same questions. We have been more worried about germs than we might have been. Both Jamie and I are very social and love being around people. Having a baby would impose restrictions socially anyway. We just have more to consider and have had to quarantine ourselves more than normal. We brought Jonathan home on a monitor that routinely went off (either false alarms or situations that corrected themselves), scaring us to death. If the alarm went off at night, we would freak out, turn it off, and try to determine if the alarm were real or not. It was hard to rest easy after that each night. Additionally, we had an incident when Jonathan had just come home that terrified us and is etched into our brains. Jonathan was in his crib. He threw up and was face down in it. Jamie discovered him with his head held high out of it with foam coming out of his mouth and nose. We called the emergency hotline for our pediatrician only to be told to watch him for a second episode. I thought for sure we should have gone to the ER. The nurse we spoke with said no three-week-old could hold his head up like that so it was suspected that he had a seizure. After seeing the doctor the next day, it was determined he had simply thrown up and it was not a seizure. He had held his head up on his own. Since then, I have been frightened to let him nap alone for fear the same incident will occur. What fuels that fear is that the monitor never went off during the entire episode. One might think it would have gone off since it appeared he was not breathing. Had it not been for Jamie acting quickly, turning Jonathan over, hitting his back, and then suctioning his nose, I don't know what would have happened. Needless to say, when I thought about all that, no wonder we have been walking on eggshells for eight weeks! It is not just the DS! So, we are thrilled that his heart will be fixed sooner rather than later. His recovery will be tough, I am sure, but at least his heart condition will be eliminated.
Please pray for good health for our family. We need Jonathan to be healthy with no respiratory infections, fever, etc. so we can have the surgery.
Again, thank you for your prayers,
Julie
So many of you are praying for us and we cannot thank you enough. We know that it is because of your prayers that Jonathan is progressing and holding his own.
According to the cardiologist's scales (and without the diaper), Jonathan weighed in at eight pounds and about 13 ounces. I think I heard the cardiologist say that he was not expecting Jonathan to gain that much. His weight gain was not great but better than expected. Since Jonathan has put on the pounds, the surgeon can go in and do both procedures necessary rather than a less invasive one first followed later by a more invasive one.
Yesterday I contacted a mom who had a child with DS on Christmas Day. She sounded great -in fact I marveled at how wonderful she sounded. She was in much better shape than I was when Jonathan was two weeks old. She said their peace probably had to do with the fact that they've been busy with their other two boys and Christmas but also that she was a speech therapist and somewhat familiar with DS. She made the point that they were not dealing with a heart problem, that their son was functioning as a typical newborn would. She suggested that we might be experiencing more stress and anxiety because of Jonathan's heart issues. I had not really considered that - I think she was right.
Initially, we had to drive back and forth to the NICU, secure childcare with my parents or Jamie's for Jackson, answer Jackson's questions of "Who is going to pick me up?", "Mommy, where are you going?", and so forth. I was more concerned about Jackson than I might have been simply because I was gone so much more than I would have been had circumstances been more normal. Then we have had added doctor visits, having to secure childcare again, and answer Jackson's same questions. We have been more worried about germs than we might have been. Both Jamie and I are very social and love being around people. Having a baby would impose restrictions socially anyway. We just have more to consider and have had to quarantine ourselves more than normal. We brought Jonathan home on a monitor that routinely went off (either false alarms or situations that corrected themselves), scaring us to death. If the alarm went off at night, we would freak out, turn it off, and try to determine if the alarm were real or not. It was hard to rest easy after that each night. Additionally, we had an incident when Jonathan had just come home that terrified us and is etched into our brains. Jonathan was in his crib. He threw up and was face down in it. Jamie discovered him with his head held high out of it with foam coming out of his mouth and nose. We called the emergency hotline for our pediatrician only to be told to watch him for a second episode. I thought for sure we should have gone to the ER. The nurse we spoke with said no three-week-old could hold his head up like that so it was suspected that he had a seizure. After seeing the doctor the next day, it was determined he had simply thrown up and it was not a seizure. He had held his head up on his own. Since then, I have been frightened to let him nap alone for fear the same incident will occur. What fuels that fear is that the monitor never went off during the entire episode. One might think it would have gone off since it appeared he was not breathing. Had it not been for Jamie acting quickly, turning Jonathan over, hitting his back, and then suctioning his nose, I don't know what would have happened. Needless to say, when I thought about all that, no wonder we have been walking on eggshells for eight weeks! It is not just the DS! So, we are thrilled that his heart will be fixed sooner rather than later. His recovery will be tough, I am sure, but at least his heart condition will be eliminated.
Please pray for good health for our family. We need Jonathan to be healthy with no respiratory infections, fever, etc. so we can have the surgery.
Again, thank you for your prayers,
Julie
Tuesday, January 10, 2006
Jonathan's Progress
When I was a senior in high school or college, I went through those years thinking, "This will be the last time I run this race, eat here, go to Homecoming, etc." My thoughts, these days, are in a similar pattern - "The last time I was here I was pregnant" - at the doctor's office, playing outside on our playset with Jackson, downstairs at my in-laws' house, at church, etc. I had no clue as to what loomed ahead for the baby inside me or for the rest of our family. At the least, that kind of thinking can make for a rough day.
Those days are becoming fewer and fewer. Today was a good day - Jonathan and I went to the Bell Center while Jackson went to Noah's Nook - his mothers' morning out program. Jonathan worked with an occupational therapist, a special educator, and a nutritionist. Between the Bell Center and the Shelby Arc Foundation, I am learning so much. At this point, I am probably benefiting more from this than Jonathan. I find it therapeutic as well - on a much different level, of course.
When Jonathan was born, someone told us that we would keep track of every milestone with Jonathan more so than with Jackson. I would not say that is true. I would say we realize how significant they are now and see that we took them for granted with Jackson.
Jonathan was super sleepy today so the therapists could not evaluate him in all the areas they would have liked. They did not check to see if he could track with his eyes because he would not wake up! I have noticed that he seems to sleep one day and is alert the next. I don't know if this is related to his heart or because I have not trained him well with napping. What was affirmed today is that he tends to favor his right side (turns and looks that way rather than left) so we will continue to try to devise ways to lure him to the left. He seems to have good reflexes and to hold his head up well.
The nutritionist was surprised that we are supplementing Jonathan's milk with vegetable oil - I think she questioned its nutritional value. I explained as best I could - that the focus is gaining weight no matter the method. She measured his length (21 inches), the circumference of his head, and his weight. His weight was so encouraging - eight pounds, fifteen ounces! This is an increase of ten ounces since his appointment with his pediatrician on December 29! Praise God!
We go to see the cardiologist tomorrow (Wednesday) at 11am. We hope to find out when Jonathan will have surgery now that he is gaining the appropriate amount of weight. Please pray that we get answers and for wisdom on the doctor's part. We continue to appreciate your prayers and support!
Julie
Those days are becoming fewer and fewer. Today was a good day - Jonathan and I went to the Bell Center while Jackson went to Noah's Nook - his mothers' morning out program. Jonathan worked with an occupational therapist, a special educator, and a nutritionist. Between the Bell Center and the Shelby Arc Foundation, I am learning so much. At this point, I am probably benefiting more from this than Jonathan. I find it therapeutic as well - on a much different level, of course.
When Jonathan was born, someone told us that we would keep track of every milestone with Jonathan more so than with Jackson. I would not say that is true. I would say we realize how significant they are now and see that we took them for granted with Jackson.
Jonathan was super sleepy today so the therapists could not evaluate him in all the areas they would have liked. They did not check to see if he could track with his eyes because he would not wake up! I have noticed that he seems to sleep one day and is alert the next. I don't know if this is related to his heart or because I have not trained him well with napping. What was affirmed today is that he tends to favor his right side (turns and looks that way rather than left) so we will continue to try to devise ways to lure him to the left. He seems to have good reflexes and to hold his head up well.
The nutritionist was surprised that we are supplementing Jonathan's milk with vegetable oil - I think she questioned its nutritional value. I explained as best I could - that the focus is gaining weight no matter the method. She measured his length (21 inches), the circumference of his head, and his weight. His weight was so encouraging - eight pounds, fifteen ounces! This is an increase of ten ounces since his appointment with his pediatrician on December 29! Praise God!
We go to see the cardiologist tomorrow (Wednesday) at 11am. We hope to find out when Jonathan will have surgery now that he is gaining the appropriate amount of weight. Please pray that we get answers and for wisdom on the doctor's part. We continue to appreciate your prayers and support!
Julie
Saturday, January 07, 2006
Update from Julie
I want to thank you all for your prayers. Please continue to lift us up when you think of us.
Since Christmas Day, I have felt less sadness and more acceptance. I still do not want our situation but I realize that it is here to stay. The more time I spend with Jonathan, the more I fall in love with him. Sadness comes when I think of all the challenges he might encounter in the future. Anxiety hits me when I think about that tiny chest being opened to repair his heart. I do struggle with sadness but not like I did at first where all I wanted to do was cry. Now that the holidays are over, Jamie is at work, and family has gone home, I am busier and my mind is occupied.
I notice myself peering into Jonathan's eyes, wondering how a child who looks so alert and typical can have this condition. A nurse in the NICU warned me that I would feel this way. She said that he would function like any other baby and I would think the diagnosis was wrong. I wanted to say, "Hey - thanks for those encouraging words. What else have you got?" and walk away. However, I am glad she spoke them because they have resounded in my brain a million times, reminding me that this is not a dream and the DS is not going away. I do hope for a mild case yet wonder if the other symptoms are just hovering under the surface, waiting to emerge in severity.
I do find that I harbor tremendous anger that my child was not born completely healthy. My anger is not noticeable to everyone - I can simply feel it bubbling below the surface. Our circumstances are just not fair. I know, I know - who am I to expect that we be given a completely healthy child as opposed to someone else? I keep wanting to say to God, "Look at all I did for you and this is what I get?" Unfortunately, that is a reflection of my poor understanding of God and how He works. Bad things happen to everyone. Being a Christian is no guarantee of being protected. I know that in my head but find I do not truly believe it in my heart. I can do nothing to earn rewards yet that is how I have lived my life - I thought that I deserved all the blessings I received. I am still struggling with the fact that my "good deeds" did not immunize me or my family. I want to point the finger at other people and say, "Remember how they hurt me? Aren't you forgetting something?" among other choice words. And if not for me, then for Jonathan - he did nothing to deserve this. I have never had anything permanent like this happen to me. I did nothing to provoke it. I am still working through those feelings.
Please pray for Jackson. He developed a stutter over the holidays. Stuttering is quite normal for his age but I am concerned that he is responding to our stress and anxiety even though we are doing our best to function normally. Please pray that he would feel safe and loved. Pray that if there is a trigger for the stutter, we would identify it and eliminate it. It simply breaks my heart to know he is a casualty in all this.
Despite the yucks, we are laughing - something I was convinced of a couple of weeks ago would never happen again. Jackson wants to hug and kiss Jonathan all the time. For some reason, out of the blue, Jackson said that Jonathan was "Gilbert the cat" from this PBS show that he rarely watches... Jackson is also incorporating movie lines into his conversation and will say, "Woody says that" or "Buzz says that." He re-enacts scenes from Toy Story with his miniature Buzz Lightyear figure... Jonathan throws up on occasion if we have fed him too much. Jackson, of course, has witnessed this. Last night at dinner, Jackson spit out some of his lemonade at the dinner table. I got on to him and he broke down in tears saying he wasn't spitting - he was just throwing up like Baby Jonathan. I was not quite sure what to say at first. Then I began to sermonize on what a lie was and how we should not tell them.:) Jamie and I laughed over that one... Potty training. Need I say more? Jackson has been able to use the toilet for about eight or nine months - he chooses not to. He wants to sit in the dirty diapers and gets mad when we try to change them. He will look at me midway through a "job" and say, with glazed-over eyes, "Mommmy, I am not going to use the potty." What do you do with that? I have heard if you force it, they just dig their heels in harder. Or, he might get on the toilet, sit there, demand that I entertain him with made-up stories or books, the toilet runs, he thinks the noise counts as "tee-tee," he hops off the toilet, and then he demands skittles or M&M's. Nice. I told Jamie since he is in sales, it is his job to sell this concept to Jackson - perhaps his most difficult client yet.
Again, thank you for your prayers. We need them. Jonathan sees the cardiologist this week. We pray for good news!
Since Christmas Day, I have felt less sadness and more acceptance. I still do not want our situation but I realize that it is here to stay. The more time I spend with Jonathan, the more I fall in love with him. Sadness comes when I think of all the challenges he might encounter in the future. Anxiety hits me when I think about that tiny chest being opened to repair his heart. I do struggle with sadness but not like I did at first where all I wanted to do was cry. Now that the holidays are over, Jamie is at work, and family has gone home, I am busier and my mind is occupied.
I notice myself peering into Jonathan's eyes, wondering how a child who looks so alert and typical can have this condition. A nurse in the NICU warned me that I would feel this way. She said that he would function like any other baby and I would think the diagnosis was wrong. I wanted to say, "Hey - thanks for those encouraging words. What else have you got?" and walk away. However, I am glad she spoke them because they have resounded in my brain a million times, reminding me that this is not a dream and the DS is not going away. I do hope for a mild case yet wonder if the other symptoms are just hovering under the surface, waiting to emerge in severity.
I do find that I harbor tremendous anger that my child was not born completely healthy. My anger is not noticeable to everyone - I can simply feel it bubbling below the surface. Our circumstances are just not fair. I know, I know - who am I to expect that we be given a completely healthy child as opposed to someone else? I keep wanting to say to God, "Look at all I did for you and this is what I get?" Unfortunately, that is a reflection of my poor understanding of God and how He works. Bad things happen to everyone. Being a Christian is no guarantee of being protected. I know that in my head but find I do not truly believe it in my heart. I can do nothing to earn rewards yet that is how I have lived my life - I thought that I deserved all the blessings I received. I am still struggling with the fact that my "good deeds" did not immunize me or my family. I want to point the finger at other people and say, "Remember how they hurt me? Aren't you forgetting something?" among other choice words. And if not for me, then for Jonathan - he did nothing to deserve this. I have never had anything permanent like this happen to me. I did nothing to provoke it. I am still working through those feelings.
Please pray for Jackson. He developed a stutter over the holidays. Stuttering is quite normal for his age but I am concerned that he is responding to our stress and anxiety even though we are doing our best to function normally. Please pray that he would feel safe and loved. Pray that if there is a trigger for the stutter, we would identify it and eliminate it. It simply breaks my heart to know he is a casualty in all this.
Despite the yucks, we are laughing - something I was convinced of a couple of weeks ago would never happen again. Jackson wants to hug and kiss Jonathan all the time. For some reason, out of the blue, Jackson said that Jonathan was "Gilbert the cat" from this PBS show that he rarely watches... Jackson is also incorporating movie lines into his conversation and will say, "Woody says that" or "Buzz says that." He re-enacts scenes from Toy Story with his miniature Buzz Lightyear figure... Jonathan throws up on occasion if we have fed him too much. Jackson, of course, has witnessed this. Last night at dinner, Jackson spit out some of his lemonade at the dinner table. I got on to him and he broke down in tears saying he wasn't spitting - he was just throwing up like Baby Jonathan. I was not quite sure what to say at first. Then I began to sermonize on what a lie was and how we should not tell them.:) Jamie and I laughed over that one... Potty training. Need I say more? Jackson has been able to use the toilet for about eight or nine months - he chooses not to. He wants to sit in the dirty diapers and gets mad when we try to change them. He will look at me midway through a "job" and say, with glazed-over eyes, "Mommmy, I am not going to use the potty." What do you do with that? I have heard if you force it, they just dig their heels in harder. Or, he might get on the toilet, sit there, demand that I entertain him with made-up stories or books, the toilet runs, he thinks the noise counts as "tee-tee," he hops off the toilet, and then he demands skittles or M&M's. Nice. I told Jamie since he is in sales, it is his job to sell this concept to Jackson - perhaps his most difficult client yet.
Again, thank you for your prayers. We need them. Jonathan sees the cardiologist this week. We pray for good news!
Wednesday, January 04, 2006
Happy New Year
Our family hopes you all had a wonderful Christmas and Happy New Year. We had a crazy and wonderful Christmas. Jackson really understood what all this meant. He connects "presents" with "Christmas" now. He was sad when it was over. Our house looked like a Toys-R-us bomb exploded. I plan to post some pictures from the holidays soon.
I wanted to let you all know that your prayers for Jonathan to gain weight are being answered with a "yes." His last documented weight was 8.5 pounds -- last week at his pediatrician visit. With less scientific methods, we think he's over 9 pounds now. His appetite continues to be good. So, that's about a 1.5 pound gain over his birth weight. He's just needs to be adding 1/3 to 1/2 ounce per day. Please specifically pray for this.
We go back to the cardiologist next week. We won't know if this weight is enough schedule the big open heart surgery now or if he'll need what I call the "temporary fix" surgery. If you've been following this, a good weight gain makes it more likely that the surgeons can do one surgery (fixing all the problems at once) vs. two separate procedures.
I know you all have been faithfully praying. Please keep it up. I'll post more frequent updates now that the holidays are behind us. All your encouragement over the Christmas was simply wonderful. We are so blessed.
Jamie
I wanted to let you all know that your prayers for Jonathan to gain weight are being answered with a "yes." His last documented weight was 8.5 pounds -- last week at his pediatrician visit. With less scientific methods, we think he's over 9 pounds now. His appetite continues to be good. So, that's about a 1.5 pound gain over his birth weight. He's just needs to be adding 1/3 to 1/2 ounce per day. Please specifically pray for this.
We go back to the cardiologist next week. We won't know if this weight is enough schedule the big open heart surgery now or if he'll need what I call the "temporary fix" surgery. If you've been following this, a good weight gain makes it more likely that the surgeons can do one surgery (fixing all the problems at once) vs. two separate procedures.
I know you all have been faithfully praying. Please keep it up. I'll post more frequent updates now that the holidays are behind us. All your encouragement over the Christmas was simply wonderful. We are so blessed.
Jamie
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