I work for my son's Pediatrician's office, they all know Zach's story and they all know how much we live at any given Dr's office. As far as Zach peds Dr, I really do like her and I do know that she has a big heart when it comes to Zach. She actually was the first Dr that agreed with me that something was wrong with Zach. All the specialist told me to come back in 6mos that he was fine, 6 mos later my son was barley able to walk and had lost a bunch of words. (yeah he was fine)
A few weeks ago she (his ped) came up to my desk and told me that a certain Dr (who happens to be the owner of the clinic) went through Zach's chart and wanted Zach's ped to go talk to us about Zach not getting his yearly physical and that he has a lot of vaccinations to get. I literally just looked at her and said "do you know how much we are at a Dr office, his physical is the farthest thing from my mind, I know that Zach is delayed and him not knowing his ABC's does not need to be retold to me. We get a physical ever time we are at a Dr's office, and as far as his vaccinations we are on IVIG and it's not necessary because that's all in the IVIG. " She agreed with me and I thought that really was going to be the end of story. A little while later she reappeared at my desk and said this Dr that went through the chart really wanted me to make sure all these vaccinations are in the IVIG protection and that I need to double check with the Dr? I told her I would, but was irritated.
Fast forward a week and I am in a meeting about new protocols that if a kid is on this particular insurance that we need to fill out this certain sheet, because this insurance is paying bonuses to the clinic for getting yearly physicals and all the vaccinations done. Well you guessed it, Zach happens to have this insurance. I was fuming. It really was a money issue.
It is so funny because after Zach's Dr came up to me, I was telling a friend/coworker about it and she being the pessimist said he is so after more money. I being the optimist said noway they were just concerned. Now I know it was about the money. The only satisfaction I'm getting is knowing that he won't be getting any bonuses on our account. There is noway in heck I will be bringing Zach in for a physical. He doesn't need them, and he certainly doesn't need to help line a pocket book.
My friend and I had a discussion about this and we think that Dr's should practice and stay out of the money end of it, because it really is a conflict of interest. Maybe because I work in the medical field and have insider information, but it is a greedy business. Luckily for Zach we have found some really good and genuine specialists. So I know it's not all corrupt.
Thursday, May 24, 2007
Friday, May 18, 2007
As Seen on the Internet
"Some Mothers Get Babies With Something More"
By: Lori Borgman Columnist and Speaker
My friend is expecting her first child. People keep asking what she wants. She smiles demurely, shakes her head and gives the answer mothers have given throughout the ages of time. She says it doesn't matter whether it's a boy or a girl. She just wants it to have ten fingers and ten toes. Of course, that's what she says. That's what mothers have always said. Mothers lie.Truth be told, every mother wants a whole lot more. Every mother wants a perfectly healthy baby with a round head, rosebud lips, button nose, beautiful eyes and satin skin.Every mother wants a baby so gorgeous that people will pity the Gerber baby for being flat-out ugly.Every mother wants a baby that will roll over, sit up and take those first steps right on schedule (according to the baby development chart on page 57, column two). Every mother wants a baby that cansee, hear, run, jump and fire neurons by the billions. She wants a kid that can smack the ball out of the park and do toe points thatare the envy of the entire ballet class.Call it greed if you want, but we mothers want what we want.Some mothers get babies with something more.Some mothers get babies with conditions they can't pronounce, a spine that didn't fuse, a missing chromosome or a palette that didn't close.Most of those mothers can remember the time, the place, the shoes they werewearing and the color of the walls in the small, suffocating room where the doctor uttered the words that took their breath away. It felt like recess in the fourth grade when you didn't see the kick ball coming and it knocked the wind clean out of you.Some mothers leave the hospital with a healthy bundle, then, months, even years later, take him in for a routine visit, or schedule her for a well check, and crash head first into a brick wall as they bear the brunt of devastating news. It can't be possible!That doesn't run in our family. Can this really be happening in our lifetime?I am a woman who watches the Olympics for the sheer thrill of seeing finely sculpted bodies. It's not a lust thing; it's a wondrous thing. The athletes appear as specimens without flaw - rippling muscles with nary an ounce of flab or fat, virtual powerhouses of strength with lungs and limbs working in perfect harmony. Then the athlete walks over to a tote bag, rustles through the contents and pulls out an inhaler.As I've told my own kids, be it on the way to physical therapy after a third knee surgery, or on a trip home from an echo cardiogram,there's no such thing as a perfect body.Everybody will bear something at some time or another. Maybe the affliction will be apparent to curious eyes, or maybe it will beunseen, quietly treated with trips to the doctor, medication or surgery. The health problems our children have experienced have been minimal and manageable, so I watch with keen interest and great admiration the mothers of children with serious disabilities, and wonder how they do it.Frankly, sometimes you mothers scare me. How you lift that child in and out of a wheelchair 20 times a day. How you monitor tests, track medications, regulate diet and serve as the gatekeeper to a hundredspecialists yammering in your ear. I wonder how you endure the clichés and the platitudes, well-intentioned souls explaining how God is at work when you've occasionally questioned if God is on strike. I even wonder how you endure schmaltzy pieces like this one -- saluting you, painting you as hero and saint, when you know you're ordinary. You snap, you bark, you bite. You didn't volunteer for this. You didn't jump up and down in the motherhood line yelling, "Choose me, God! Choose me! I've got what it takes."You're a woman who doesn't have time to step back and put things in perspective, so, please, let me do it for you.From where I sit, you're way ahead of the pack. You've developed the strength of a draft horse while holding onto the delicacy of a daffodil. You have a heart that melts like chocolate in a glove box in July, carefully counter-balanced against the stubbornness of an Ozark mule. You can be warm and tender one minute, and when circumstances require intense and aggressive the next. You are the mother, advocate and protector of a child with a disability. You're aneighbor, a friend, a stranger I pass at the mall. You're the woman I sit next to at church, my cousin and my sister-in-law. You're a woman who wanted ten fingers and ten toes, and got something more.
By: Lori Borgman Columnist and Speaker
My friend is expecting her first child. People keep asking what she wants. She smiles demurely, shakes her head and gives the answer mothers have given throughout the ages of time. She says it doesn't matter whether it's a boy or a girl. She just wants it to have ten fingers and ten toes. Of course, that's what she says. That's what mothers have always said. Mothers lie.Truth be told, every mother wants a whole lot more. Every mother wants a perfectly healthy baby with a round head, rosebud lips, button nose, beautiful eyes and satin skin.Every mother wants a baby so gorgeous that people will pity the Gerber baby for being flat-out ugly.Every mother wants a baby that will roll over, sit up and take those first steps right on schedule (according to the baby development chart on page 57, column two). Every mother wants a baby that cansee, hear, run, jump and fire neurons by the billions. She wants a kid that can smack the ball out of the park and do toe points thatare the envy of the entire ballet class.Call it greed if you want, but we mothers want what we want.Some mothers get babies with something more.Some mothers get babies with conditions they can't pronounce, a spine that didn't fuse, a missing chromosome or a palette that didn't close.Most of those mothers can remember the time, the place, the shoes they werewearing and the color of the walls in the small, suffocating room where the doctor uttered the words that took their breath away. It felt like recess in the fourth grade when you didn't see the kick ball coming and it knocked the wind clean out of you.Some mothers leave the hospital with a healthy bundle, then, months, even years later, take him in for a routine visit, or schedule her for a well check, and crash head first into a brick wall as they bear the brunt of devastating news. It can't be possible!That doesn't run in our family. Can this really be happening in our lifetime?I am a woman who watches the Olympics for the sheer thrill of seeing finely sculpted bodies. It's not a lust thing; it's a wondrous thing. The athletes appear as specimens without flaw - rippling muscles with nary an ounce of flab or fat, virtual powerhouses of strength with lungs and limbs working in perfect harmony. Then the athlete walks over to a tote bag, rustles through the contents and pulls out an inhaler.As I've told my own kids, be it on the way to physical therapy after a third knee surgery, or on a trip home from an echo cardiogram,there's no such thing as a perfect body.Everybody will bear something at some time or another. Maybe the affliction will be apparent to curious eyes, or maybe it will beunseen, quietly treated with trips to the doctor, medication or surgery. The health problems our children have experienced have been minimal and manageable, so I watch with keen interest and great admiration the mothers of children with serious disabilities, and wonder how they do it.Frankly, sometimes you mothers scare me. How you lift that child in and out of a wheelchair 20 times a day. How you monitor tests, track medications, regulate diet and serve as the gatekeeper to a hundredspecialists yammering in your ear. I wonder how you endure the clichés and the platitudes, well-intentioned souls explaining how God is at work when you've occasionally questioned if God is on strike. I even wonder how you endure schmaltzy pieces like this one -- saluting you, painting you as hero and saint, when you know you're ordinary. You snap, you bark, you bite. You didn't volunteer for this. You didn't jump up and down in the motherhood line yelling, "Choose me, God! Choose me! I've got what it takes."You're a woman who doesn't have time to step back and put things in perspective, so, please, let me do it for you.From where I sit, you're way ahead of the pack. You've developed the strength of a draft horse while holding onto the delicacy of a daffodil. You have a heart that melts like chocolate in a glove box in July, carefully counter-balanced against the stubbornness of an Ozark mule. You can be warm and tender one minute, and when circumstances require intense and aggressive the next. You are the mother, advocate and protector of a child with a disability. You're aneighbor, a friend, a stranger I pass at the mall. You're the woman I sit next to at church, my cousin and my sister-in-law. You're a woman who wanted ten fingers and ten toes, and got something more.
Wednesday, May 16, 2007
Things I wonder about.
Today I had coffee with a good friend and who also happens to be Zach's old preschool teacher. He and his wife came into our life just when Zach was getting sick. They also had a child named Jack who was ill, and also happened to have sorta the same disease that Zach was later diagnosed with. Actually Zach was diagnosed two weeks after their son Jack passed away, so I knew all too well what a horrible disease Zach was facing.
Jason and I get together every few months. At first it was hard for me, and I believe it was also hard for them because Zach was so much like their Jack, and for me I just felt horrible for them and didn't know what to say, and I also felt guilty that I still had Zach. I look back on it now and think that was stupid, but I had never been around anyone that has lost their child before, and it was raw emotion.
Unfortunatly Jason and Naomi are living my future, a world without their son. I know they continue to have a hard time with it as any parent would, but they also continue to open up there hearts to me and others. Jason talks very openly about his experience and is always reaching out. I would also like to think that us getting together also is his chance to talk about Jack and we can remember him too. As bittersweet as it's been, I can't help but think that God put them in my life. I mean really what are the chances that they have a son with almost the same disease as Zach was about to get diagnosed with and Jason turns out to be Zach's teacher. It was Jason first year teaching at this school and we had just moved to this city a few months prior. It's a rare disease. That has to be divine intervention, or I could be reading into it!!
A couple of weeks ago I asked a friend if she thought that a group of us would still hang out together after our kids were gone. We have been such a part of each other's world for a couple of years now, but I can honestly say they reason why we are all together is because of our kids. Our kids are in activities together, and that leads to us parents getting together. She answered by saying it depends if you want to stay in the disabled world or not. I have thought about that a ton and I hope that I won't turn my back on it, but I bet it would be hard. Jason, Zach's teacher didn't give up it persay, but he has a hard time teaching kids now, so he went into advocacy and parent teaching. But his wife continues to teach special ed. I think that would be so hard, but what a gift she has. There are not a lot of people that have had first hand experience with it, she is able to help others through her tragedy, but could you imagine the pain? I can only hopw that our story will turn into good somehow, that somehow I can make something right and make Zach's life a legacy.
There are so many bittersweet things that come out of a child with a disabilty. You really do have people come into your life that you would never of gotten to know that have become very good friends and you can't imagine your life without. You also can't imagine how incomplete your life was without your special child, and how at least for me how shallow my life was, and how selfish I was. Zach has taught me so much, I know that I wouldn't be the person that I am today without this unfortunate circumstances, but then again are they really unfortunate? We grieve the fact that our perfect child has issues, but they really are still perfect to us. I love my little boy. Given the choice I really would do it all over again...
Jason and I get together every few months. At first it was hard for me, and I believe it was also hard for them because Zach was so much like their Jack, and for me I just felt horrible for them and didn't know what to say, and I also felt guilty that I still had Zach. I look back on it now and think that was stupid, but I had never been around anyone that has lost their child before, and it was raw emotion.
Unfortunatly Jason and Naomi are living my future, a world without their son. I know they continue to have a hard time with it as any parent would, but they also continue to open up there hearts to me and others. Jason talks very openly about his experience and is always reaching out. I would also like to think that us getting together also is his chance to talk about Jack and we can remember him too. As bittersweet as it's been, I can't help but think that God put them in my life. I mean really what are the chances that they have a son with almost the same disease as Zach was about to get diagnosed with and Jason turns out to be Zach's teacher. It was Jason first year teaching at this school and we had just moved to this city a few months prior. It's a rare disease. That has to be divine intervention, or I could be reading into it!!
A couple of weeks ago I asked a friend if she thought that a group of us would still hang out together after our kids were gone. We have been such a part of each other's world for a couple of years now, but I can honestly say they reason why we are all together is because of our kids. Our kids are in activities together, and that leads to us parents getting together. She answered by saying it depends if you want to stay in the disabled world or not. I have thought about that a ton and I hope that I won't turn my back on it, but I bet it would be hard. Jason, Zach's teacher didn't give up it persay, but he has a hard time teaching kids now, so he went into advocacy and parent teaching. But his wife continues to teach special ed. I think that would be so hard, but what a gift she has. There are not a lot of people that have had first hand experience with it, she is able to help others through her tragedy, but could you imagine the pain? I can only hopw that our story will turn into good somehow, that somehow I can make something right and make Zach's life a legacy.
There are so many bittersweet things that come out of a child with a disabilty. You really do have people come into your life that you would never of gotten to know that have become very good friends and you can't imagine your life without. You also can't imagine how incomplete your life was without your special child, and how at least for me how shallow my life was, and how selfish I was. Zach has taught me so much, I know that I wouldn't be the person that I am today without this unfortunate circumstances, but then again are they really unfortunate? We grieve the fact that our perfect child has issues, but they really are still perfect to us. I love my little boy. Given the choice I really would do it all over again...
Tuesday, May 15, 2007
The Nasty EX
I consider myself a single mom, and I consider Zach's dad a scheduled dad. You know those dad's that refuse to take their kids when they are not scheduled to take them. So in our case Zach's dad is only a dad every other weekend. (Yes I'm Bitter).
I really try to make Zach's life as fun as I can. I really try and sign him up for things that he will enjoy. One of those being an adapted T-Ball league. This is called Challenger league. It's only for special needs kids and most kids are paired up with a typical peer that helps them play the game of baseball. In Zach's case he needs a lot of help, but always has a smile on his face when he is being pushed around the bases or being helped to hit the ball. He loves it.
Last year they were short on buddies, so Zach's scheduled dad and I had to step up to the plate and be Zach's buddy. When the scheduled dad was out there he would do his own thing with Zach and spin in circles, anything but pay attention to the game. Irritated most us parents on the bench watching. This year though they had enough buddies sign up and all the kids were able to be with a typical peer. Our peer that Zach got was awesome and so good with Zach. He would just talk to Zach and he would light up.
Well guess what the scheduled dad did not like the fact that he was sharing his kid and teaching this boy what it's like to have a disability. Scheduled dad thought Zach was bored because he wasn't being spun around and made dizzy. So he took it upon himself and told the buddy that he was taking over the buddy position. I tried to stop this, but scheduled dad's mind was made and instead of making everyone uncomfortable I walked away as mad as can be. Mind you that scheduled dad is one of the only parents out there, and all kids basically have a typical peer as a buddy.
When I signed Zach up for T-ball it was suppose to be about Zach. This year they have kids Zach's age wanting to be a part of it and it's teaching everyone, and everyone is having fun including Zach. I have seen him with the biggest smile on his face. If Zach was a typical kid scheduled dad would not be out there playing with him, scheduled dad would be watching. That is how Challenger League is suppose to work.
This is about suppse to be about Zach, , let him be with his peers and doing something that a normal kid gets to do without there parents. Let him be a typical kid for once in his life.
Well I do believe in Karma. About 10 minutes into the game scheduled dad was once again doing his own thing out in the field, and scheduled dad and the wheelchair with Zach went flying. Zach was hanging upside down and scheduled dad was lying on the ground. I thank goodness I did not see what happened, I was to busy talking to the buddies mom explaining all about scheduled dad. Everyone starting calling my name and I looked up to see my son hanging upside down. I was irate, and yet because Zach was fine I was so glad that it happened. The buddies mom told me that, that would never of happened with her son.
Later on scheduled dad told me he thinks his shoulder was dislocated. All I could think about and say was good! Karma gotta love it.
I really try to make Zach's life as fun as I can. I really try and sign him up for things that he will enjoy. One of those being an adapted T-Ball league. This is called Challenger league. It's only for special needs kids and most kids are paired up with a typical peer that helps them play the game of baseball. In Zach's case he needs a lot of help, but always has a smile on his face when he is being pushed around the bases or being helped to hit the ball. He loves it.
Last year they were short on buddies, so Zach's scheduled dad and I had to step up to the plate and be Zach's buddy. When the scheduled dad was out there he would do his own thing with Zach and spin in circles, anything but pay attention to the game. Irritated most us parents on the bench watching. This year though they had enough buddies sign up and all the kids were able to be with a typical peer. Our peer that Zach got was awesome and so good with Zach. He would just talk to Zach and he would light up.
Well guess what the scheduled dad did not like the fact that he was sharing his kid and teaching this boy what it's like to have a disability. Scheduled dad thought Zach was bored because he wasn't being spun around and made dizzy. So he took it upon himself and told the buddy that he was taking over the buddy position. I tried to stop this, but scheduled dad's mind was made and instead of making everyone uncomfortable I walked away as mad as can be. Mind you that scheduled dad is one of the only parents out there, and all kids basically have a typical peer as a buddy.
When I signed Zach up for T-ball it was suppose to be about Zach. This year they have kids Zach's age wanting to be a part of it and it's teaching everyone, and everyone is having fun including Zach. I have seen him with the biggest smile on his face. If Zach was a typical kid scheduled dad would not be out there playing with him, scheduled dad would be watching. That is how Challenger League is suppose to work.
This is about suppse to be about Zach, , let him be with his peers and doing something that a normal kid gets to do without there parents. Let him be a typical kid for once in his life.
Well I do believe in Karma. About 10 minutes into the game scheduled dad was once again doing his own thing out in the field, and scheduled dad and the wheelchair with Zach went flying. Zach was hanging upside down and scheduled dad was lying on the ground. I thank goodness I did not see what happened, I was to busy talking to the buddies mom explaining all about scheduled dad. Everyone starting calling my name and I looked up to see my son hanging upside down. I was irate, and yet because Zach was fine I was so glad that it happened. The buddies mom told me that, that would never of happened with her son.
Later on scheduled dad told me he thinks his shoulder was dislocated. All I could think about and say was good! Karma gotta love it.
Monday, May 14, 2007
First Blog
Although we have a Caringbridge page to update friends and family on Zach's medical, I felt like I couldn't use that as anything but that. So in turn I decided to join the blogging world, so I could vent, share stories and express myself and not hold back.
I am a mom with a terminal ill, disabled child. Whom I love more then anything in this world, and I would do anything for. We have been on an adventure together, and my heart aches for him. I long for a miracle, but live in a raw reality. So we try and live day by day, but sometimes those days are long and sometimes I feel sorry for myself, but most of all I feel like my heart is going to break for my bubba's, even though he, thank God does not get all that he has had to endure and will endure.
I also don't want people to pity us. We are OK and really are enjoying life and living life's moments. There is nothing to pity, but we can all grieve the pain that so many children and adults are having to endure and also what their families that love them are going through.
And Yes I know that none of us know when our time will be, but it is so different when you know that someone you love is walking a thin line of life and death. If your healthy you aren't thinking about it. ( unless you have mortality issues!)
I am a mom with a terminal ill, disabled child. Whom I love more then anything in this world, and I would do anything for. We have been on an adventure together, and my heart aches for him. I long for a miracle, but live in a raw reality. So we try and live day by day, but sometimes those days are long and sometimes I feel sorry for myself, but most of all I feel like my heart is going to break for my bubba's, even though he, thank God does not get all that he has had to endure and will endure.
I also don't want people to pity us. We are OK and really are enjoying life and living life's moments. There is nothing to pity, but we can all grieve the pain that so many children and adults are having to endure and also what their families that love them are going through.
And Yes I know that none of us know when our time will be, but it is so different when you know that someone you love is walking a thin line of life and death. If your healthy you aren't thinking about it. ( unless you have mortality issues!)
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