The past two days have been a whirlwind of emotions and events. Tuesday has been one of the worst days we have had and yesterday was one of the best. So many things have been going on good and bad. Tuesday Michael broke his tooth, the neighbor called the cops on our dog for barking, and it was generally a very emotional day. I joined a couple of online support groups and am still feeling my way around to see where I fit in. The local Compassionate Friends organization called me back so Hugh and I can look into attending one of their mettings in May.
I was so furious after the cop knocked on my door. It was not during hours that are quiet hours when the dog was out. She is a rescue dog so she is very skittish and barks a lot when outside. A leaf falling from a tree will start her off but she does stop. We are also trying to get her use to staying on the line for a period of time so that she doesn't always have to be stuck inside on nice days. Of course whoever it was(and I have my susp who it was since we have had problems with this neighbor right after our son died and for whatever reason she always starts with Hugh and I. We want to just be left alone to live our lives without her interfearing because she doesn't like us and we just choose not to associate with her.) didn't leave their name. I just don't understand why they just couldn't knock on the door and say the dog is annoying us, can you bring her in. I appologized to the officer for someone wasting his time, There were tons of dogs outside barking all day long and especially during that time period. He even admitted that he hadn't even heard the dog the whole time he was there because all he heard was the dog two doors down!
The people across the street have had numerous issues with us for whatever reason. I have never understood why or what the deal is but if you don't like us that is fine just don't bother us. They have no idea the life that we have to lead and only see and judge us by the very little they know about our lives. I pray for them because we are not the only people that have had issues with them but they put on a good front for everyone who has never had issues with them. It is sad but I also refuse to give into a bully, because that is what they have become to our family. I really feel sorry for them and the people they are, that they have to do this to a family who has had such a hard time in life and just lost their son.
After the cop left, who was none to happy that someone called about something like this, we moved the rest of George's things to my mom's house. It was so hard to do. I stood there in my front yard crying as my brother put his bouncer, swing, and jumper into my dad's truck. The finality of the things that he used every day going away was just so hard to see. It just sunk in even more that my sweet boy is forever gone. It is so terrible to know this is how my life will forever be...without my little boy. I miss him so much every single day and it is not getting any better and I have just come to the conclusion, it isn't.
God has a plan for us all and I keep telling myself that. I don't like what he chose to do with my baby but I have to trust his greater plan. There is this awsome picture I took of George right before he died where he is pointing his finger. I sat there looking at it after another mom who lost her daugter to SIDS made a comment on it on facebook. She said that it looked like he was saying "Can you believe these guys?" Well, I sat there thinking it has got to be the same exact expression he is using when he looks down from heaven. Just sitting there expressing to everyone up there...do you believe them all and what they are doing? I am here and in such a great place. At least that is what I try to tell myself when I question why he took my son. I sat there that night asking God why yet again.
In the morning I had gotten a call from a Dr. at the SIDS foundation. I told him about the questions I had with his autopsy. After much discussion, he told me that he felt we needed to look further into his death since we knew we had a family history of metabolic stuff. He was concerned on many levels and thought that my questions were very valid and needed to be looked into more. He suggested I contact a genetics doc and also the medical examiner's office to see if they still had things from his autopsy. I got a hold of them immediately to make sure they did not destroy anything and they have what is left of my son in a jar and in their freezer( I hate the very thought of what they do to remains after an autopys...it makes me so mad and why I didn't wan't one to begin with, but I had no say. I cry every single time I think about what they did to my baby and his body).
I called the genetics department at Cooper since I knew they took our insurance. The boys old ped had worked there during his internship and that was the first hospital Josh was at when he had his seizures. I was not thrilled with them but have not been with St. Chris and figure that I will just have to teach these docs, The United Mitochondrial Disease Foundation has a program where they will send one of the specialists to a hospital and I know they are trying to make their hospital a pediatric specialty hospital so it is worth a shot. If I don't like the first appt or the outcome I can reevaluate what we are gonna do.
I called the genetics department and got a call back right away. Ironically(or just part of God's plan) they happened to have a cancellation for next Thursday. I told them I would be there no matter what since if it wasn't for that slot opening we would have been waiting until Sept. This doc had come highly recomended by a pulmonologist that we had followed with at their hospital prior to our switch to St. Chris.
She said this doc has no problems saying she doesn't know an answer but will find out and hunt down any docs that she needs to in order to get answers. I appreciate that more then anyone could immagine and hope it works in our favor. I went today to drop off their records so they could sift through them prior to the appointment and make copies of the things they need and let me know if there is anything else we have to get.
My day did not end there either. I've been doing a lot of research on a corrolation between SIDS and metabolic stuff, especially after the conversation with the doc from the SIDS foundation. I have a friend who is a microbiologist in German who had also told me about chemical issues. I know that metabolic stuff can also be related to enviromental factors and could actually be a combination of heredity and environment. I've been trying to switch a lot of the kids things over to products that don't have toxic cemicals involved in their make up. I happened to look at some information on a company that we have recently noticed comercials for and I happened to see in the local store. On their page I found a page to a company that specializes in chemical free mattresses.
That is unheard of here in the US apparently. My recent research has lead me to find the US is the only country worldwide that allows chemicals on our mattresses. Our mattresses cannot be sold in other countries due to toxicity levels!!! The chemical has been linked to SIDS and metabolic issues. I just about had the wind knocked out of me when I found all of this information. There have been numerous studies that we here in the US don't acknowledge but after speaking to others that live outside of our country and my research, I have to agree with them and even if I am wrong, I am not willing to take the risk. I emailed this company http://www.hastens.com/en-us/ about their mattresses to see if they had any East Coast facilities since they are a specialty store in Hollywood, CA with extremely high prices. I just gave them a brief reason taht I was looking into this and asked if they could give me some guidance and help I would be greatly appreciative of their help. I never expected to really hear from them other then the standard message.
Just about a half hour later, I got a phone call from CA. I really thought it was a bill collector to be honest. When I answered the phone there was a mans voice on the other end who just did not know how to say what he was feeling. He fumbled for the words to tell me who he was and how sorry he was that I had to contact him under the circumstances. Our story had touched his heart and he happened to be the vice president of this company!!! My jaw just about hit the floor, here is a vice president of this company calling me, a bereaved NJ mom. He was such a wonderful person and he tried to tell me how to go about making our house a "green" house. He told me what was importnat to switch out first since the entire process is expensive.
I cried several times as he told me his experience with SIDS in other countries(He was not trying to sell me his product because he gave me other alternatives if we can't make this happen but rather, he cared for us...complete strangers). His company is the only one here in the US that has 100% chemical free mattresses. He also confirmed much of my research on SIDS and cell dysfunction and all the chemicals we use in our homes. He explained why we now have a new sleep position for children here in the US and all of the things that go hand in hand with the chemicals on our childrne's mattresses. The one thing I don't get is why a child's bed has to have this stuff on them because it isn't like they are gonna fall asleep with a cigarette in thier hands and set the bed on fire! Side effects of chemicals is nothing new to most of us since there are many people now realizing the damage these things have done to many people's health. He told me that they are willing to work with us to get our boys healthy mattresses. I just sat there sobbing and thanking him. He didn't have to do that and told me that he thought that we all have a purpose here and if I find any organization to work with him on spreading the word about all of this then I am to call him and he gave me his personal cell phone number. I am still in shock now!!!
My theory on it is definately that those with metabolic issues on a hereditary level are more likely to have issues with these sorts of chemicals and that is why not every baby dies. No matter if I am wright or wrong, I am not willing to chance my childrens lives, I have already lost one. I don't know if George was here to save his brothers but I know he has touched so many people in so many different ways. Hugh has such a huge family history of loss of infants to SIDS and lots of other serious medical conditions to those who are close to him. The genetics office said that there has got to be more to this all and I have to agree. No matter the case, he is changing lives even in his death and I guess if you have your child go before you, you want at least something good to come from your pain. I am just still so AMAZED how a 4 month old little boy who could not talk or walk can change the world in such an amazing way.
I was so furious after the cop knocked on my door. It was not during hours that are quiet hours when the dog was out. She is a rescue dog so she is very skittish and barks a lot when outside. A leaf falling from a tree will start her off but she does stop. We are also trying to get her use to staying on the line for a period of time so that she doesn't always have to be stuck inside on nice days. Of course whoever it was(and I have my susp who it was since we have had problems with this neighbor right after our son died and for whatever reason she always starts with Hugh and I. We want to just be left alone to live our lives without her interfearing because she doesn't like us and we just choose not to associate with her.) didn't leave their name. I just don't understand why they just couldn't knock on the door and say the dog is annoying us, can you bring her in. I appologized to the officer for someone wasting his time, There were tons of dogs outside barking all day long and especially during that time period. He even admitted that he hadn't even heard the dog the whole time he was there because all he heard was the dog two doors down!
The people across the street have had numerous issues with us for whatever reason. I have never understood why or what the deal is but if you don't like us that is fine just don't bother us. They have no idea the life that we have to lead and only see and judge us by the very little they know about our lives. I pray for them because we are not the only people that have had issues with them but they put on a good front for everyone who has never had issues with them. It is sad but I also refuse to give into a bully, because that is what they have become to our family. I really feel sorry for them and the people they are, that they have to do this to a family who has had such a hard time in life and just lost their son.
After the cop left, who was none to happy that someone called about something like this, we moved the rest of George's things to my mom's house. It was so hard to do. I stood there in my front yard crying as my brother put his bouncer, swing, and jumper into my dad's truck. The finality of the things that he used every day going away was just so hard to see. It just sunk in even more that my sweet boy is forever gone. It is so terrible to know this is how my life will forever be...without my little boy. I miss him so much every single day and it is not getting any better and I have just come to the conclusion, it isn't.
God has a plan for us all and I keep telling myself that. I don't like what he chose to do with my baby but I have to trust his greater plan. There is this awsome picture I took of George right before he died where he is pointing his finger. I sat there looking at it after another mom who lost her daugter to SIDS made a comment on it on facebook. She said that it looked like he was saying "Can you believe these guys?" Well, I sat there thinking it has got to be the same exact expression he is using when he looks down from heaven. Just sitting there expressing to everyone up there...do you believe them all and what they are doing? I am here and in such a great place. At least that is what I try to tell myself when I question why he took my son. I sat there that night asking God why yet again.
In the morning I had gotten a call from a Dr. at the SIDS foundation. I told him about the questions I had with his autopsy. After much discussion, he told me that he felt we needed to look further into his death since we knew we had a family history of metabolic stuff. He was concerned on many levels and thought that my questions were very valid and needed to be looked into more. He suggested I contact a genetics doc and also the medical examiner's office to see if they still had things from his autopsy. I got a hold of them immediately to make sure they did not destroy anything and they have what is left of my son in a jar and in their freezer( I hate the very thought of what they do to remains after an autopys...it makes me so mad and why I didn't wan't one to begin with, but I had no say. I cry every single time I think about what they did to my baby and his body).
I called the genetics department at Cooper since I knew they took our insurance. The boys old ped had worked there during his internship and that was the first hospital Josh was at when he had his seizures. I was not thrilled with them but have not been with St. Chris and figure that I will just have to teach these docs, The United Mitochondrial Disease Foundation has a program where they will send one of the specialists to a hospital and I know they are trying to make their hospital a pediatric specialty hospital so it is worth a shot. If I don't like the first appt or the outcome I can reevaluate what we are gonna do.
I called the genetics department and got a call back right away. Ironically(or just part of God's plan) they happened to have a cancellation for next Thursday. I told them I would be there no matter what since if it wasn't for that slot opening we would have been waiting until Sept. This doc had come highly recomended by a pulmonologist that we had followed with at their hospital prior to our switch to St. Chris.
She said this doc has no problems saying she doesn't know an answer but will find out and hunt down any docs that she needs to in order to get answers. I appreciate that more then anyone could immagine and hope it works in our favor. I went today to drop off their records so they could sift through them prior to the appointment and make copies of the things they need and let me know if there is anything else we have to get.
My day did not end there either. I've been doing a lot of research on a corrolation between SIDS and metabolic stuff, especially after the conversation with the doc from the SIDS foundation. I have a friend who is a microbiologist in German who had also told me about chemical issues. I know that metabolic stuff can also be related to enviromental factors and could actually be a combination of heredity and environment. I've been trying to switch a lot of the kids things over to products that don't have toxic cemicals involved in their make up. I happened to look at some information on a company that we have recently noticed comercials for and I happened to see in the local store. On their page I found a page to a company that specializes in chemical free mattresses.
That is unheard of here in the US apparently. My recent research has lead me to find the US is the only country worldwide that allows chemicals on our mattresses. Our mattresses cannot be sold in other countries due to toxicity levels!!! The chemical has been linked to SIDS and metabolic issues. I just about had the wind knocked out of me when I found all of this information. There have been numerous studies that we here in the US don't acknowledge but after speaking to others that live outside of our country and my research, I have to agree with them and even if I am wrong, I am not willing to take the risk. I emailed this company http://www.hastens.com/en-us/ about their mattresses to see if they had any East Coast facilities since they are a specialty store in Hollywood, CA with extremely high prices. I just gave them a brief reason taht I was looking into this and asked if they could give me some guidance and help I would be greatly appreciative of their help. I never expected to really hear from them other then the standard message.
Just about a half hour later, I got a phone call from CA. I really thought it was a bill collector to be honest. When I answered the phone there was a mans voice on the other end who just did not know how to say what he was feeling. He fumbled for the words to tell me who he was and how sorry he was that I had to contact him under the circumstances. Our story had touched his heart and he happened to be the vice president of this company!!! My jaw just about hit the floor, here is a vice president of this company calling me, a bereaved NJ mom. He was such a wonderful person and he tried to tell me how to go about making our house a "green" house. He told me what was importnat to switch out first since the entire process is expensive.
I cried several times as he told me his experience with SIDS in other countries(He was not trying to sell me his product because he gave me other alternatives if we can't make this happen but rather, he cared for us...complete strangers). His company is the only one here in the US that has 100% chemical free mattresses. He also confirmed much of my research on SIDS and cell dysfunction and all the chemicals we use in our homes. He explained why we now have a new sleep position for children here in the US and all of the things that go hand in hand with the chemicals on our childrne's mattresses. The one thing I don't get is why a child's bed has to have this stuff on them because it isn't like they are gonna fall asleep with a cigarette in thier hands and set the bed on fire! Side effects of chemicals is nothing new to most of us since there are many people now realizing the damage these things have done to many people's health. He told me that they are willing to work with us to get our boys healthy mattresses. I just sat there sobbing and thanking him. He didn't have to do that and told me that he thought that we all have a purpose here and if I find any organization to work with him on spreading the word about all of this then I am to call him and he gave me his personal cell phone number. I am still in shock now!!!
My theory on it is definately that those with metabolic issues on a hereditary level are more likely to have issues with these sorts of chemicals and that is why not every baby dies. No matter if I am wright or wrong, I am not willing to chance my childrens lives, I have already lost one. I don't know if George was here to save his brothers but I know he has touched so many people in so many different ways. Hugh has such a huge family history of loss of infants to SIDS and lots of other serious medical conditions to those who are close to him. The genetics office said that there has got to be more to this all and I have to agree. No matter the case, he is changing lives even in his death and I guess if you have your child go before you, you want at least something good to come from your pain. I am just still so AMAZED how a 4 month old little boy who could not talk or walk can change the world in such an amazing way.
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