My sweet boy,
I miss you more then words can say. It has been 4 weeks since you left me. I went from being on the top of the world to living a life that now feels like a living hell. My arms yearn to hold you and my lips want to kiss you sweet little head. The sound of you laugher is now something I only hear in my dreams or echoing in the back of my head. Memories are all I now have to hold and that is the worst and lonliest feeling in the whole world.
My life has been so difficult. I know there are other people out there who have lived even tougher ones but Lord knows I don't feel any comfort in that. It had seemed as if we just got things all together when it all just unravled in a blink of an eye. Loosing you has been the hardest thing in my life that I have ever had to go through. I have been forever changed and the person I knew before no longer exists. It saddens me to realize this and know that a life I once dreamed of will just never be a reality.
I go into your room at least once a day praying and asking God for strenght. There have been times that I got mad at him for taking you from me and others where I asked him why. I know that this is all normal but I feel anything but that. Life as I knew it has ceased to exist and that gives me so many mixed emotions that I can't even begin to explain.
My own personal relationships have been hard for me to keep. Small talk has become something I dread! The phone ringing just makes me cringe to think that I will have to yet again pretend like my life is not in shambles right now just so that I can get through a simple phone conversation. The minor problems of those around me are just torture to have to listen to and pretend that I really care about when in deed I don't. I feel guilty for not caring or getting frustrated with these things but I know that everyone elses lives have kept going on while mine has come to a screeching hault. I know I have to live again and move forward but right now all I can do is get by.
The days feel so empty. I want to get up and walk into your room to pick you up and play with you or feed you. In the refridgerator sits the apples and pears I use to make for you to eat. Every time I open the door, part of me breaks again at the very thoguht that they were for you. I've taken all your things that were in the cabinets and moved them to your room just for the fact I cannot keep opening drawers or doors and feel like I want to cry whenever I do it.
Then there are the times it feels as if you were never here. It was such a short amount of time. The time was so great that it feels as if maybe that was the dream rather then the nightmare I am living now. Everyone else only knew you for 4 months but I knew you much longer. I knew you from the very moment God blessed me with you. At night when you were in my belly I use to sit and talk to you or sing to you. You were safe there and I got a chance to know you in a way no one else every would. I'd watch as you would make my belly all sorts of crazy shapes.
I remember how hard it was for me to tell everyone that you were coming. I was so happy to have you join our family dispite the fact that so many people disapproved. All the disapproval made it hard but I didn't care because I already loved you with all my heart. I remember telling daddy that I didn't want a baby shower because I just didn't want people to feel as if they had to do it and silently feel the disappointment in my heart all over again. From the beginning I went out and got things for you because I wanted it to be as special for you as it had been for your big brothers. Not many people ever understood the things I have done in my life but I did and I could not wait to hold you.
The day came for you to be born. You did not want to wait until you were due and picked a day we would never forget! With each labor pain, I remember feeling the presence of Oma and Opa. It was a very sureal feeling. They finally took me back for the csection and I heard your first cry. It still rings in my ears this very moment. I remember looking at you and thinking how perfect you were. The first time I held you was just magic. Holding your baby for the first time is something that never gets old. From the very beginning there was just a special connection between us.
Thinking back on everything, it is no wonder that I feel as terrible as I do. I miss you with ever fiber of my being. Had you not been secial to me it would not hurt like this. I've watched things on the news where people just throw their children away and I wonder why? Why would God just not have taken that child and left you for me to love? I don't think I will ever understand but I do know that the time you were here and even after, you were loved beyon measure.
I'm thinking about donating your things to someone who could truly use them. Our church goes to Camden once a month and I know there are always people there who would be able to use them. Even if daddy and I were to have another baby, I don't know if I could watch that child wear your clothing and use your things. We have clothes you never even got to wear and I would like to know someone got use from them and got to see their baby smile and giggle like you did. There are a few that are sentimental that we will of course keep or have added to your memory quilt but there is no sense in it going to waste.
I've began planning your memorial garden. We got in a beautiful stone that has your name and dates on it. Daddy's friend Ryan ordered a tree already. I have gotten a hold of the same nursery that helped with your big brother Joshua's wish and have plans to get rose bushes from them. It is going to be beautiful and a place we can go to when we miss you to feel closer to you.
Today I finally finished your photo albums. I took all the pictures from your photo boards along with the stickers everyone sent and put them into two books. Each day I try to work on something else to try and move on with life. There are just some things I don't know what to do with them. Your baby book sits only partially filled out. It was supose to be for you to look at when you were older. Ever single time I see it a huge wave of saddness comes over me knowing that you don't even know what was written in it and that nothing else will ever be filled out. What am I suppose to do with it? I had so many plans for you and dreams that will never be fulfilled.
Somehow I know that I will get through all of this. I know you are with me in spirit but it is not the same as you being here with me. So many songs have helped me to cope and move through each day. You always loved music. I bought you a Precious Moment's CD bundle the other day in the store. In my head I knew you would never get to listen to it but I still had to buy it. It was not expensive but it was just something I felt the need to have disite the fact it still sits in it's wrapper on my bed next to me.
I've come to find friends I never knew I had and struggle to deal with disappointment I have found in others who I thought would be there if something like this happened. Every day God get's me through the day. Some days are ok and some are just really bad. Today has been a middle of the road sort of day but I always find Friday's to be tough days for me. The events of the day you left just haunt me. In time I know they will fade to a vague memory but right now it is as if I relive every single moment without a loss of recolection of every second. The days following are pretty much a blur but that day and the day we went to the funeral home are so vivid.
I rewatched your service yesterday. There were several moemnts that really hit me. Watching communion took my breath away. The very thought of what communion was an how awsome of a thing it was to see all those there for you just touche my heart in a way I can't explain. Your Uncle Glenn was truly filled by the holy spirit as he sang and you could hear the Lord's presence in the music he lifed up. It was just amazing! The readings we picked were very special and talked about going and making a place for us in heaven. I know you are all doing that right now. It seems like an eternity here on Earth but I now it will be the blink of an eye for you until we are all together agian.
I miss you my little monkey. I hope that heaven is as beautiful and wonderful as I immagine it to be. If you can't be in my arms then I am glad you are there. I can't wait for the day that I join you...I can only begin to immagine how awsome that day will be. God has plans for me still so we will both have to wait for the time he calls me home and my job here is done. For now I am left to find a new "normal" and a way to move on without you in my life. It still amazes me how such a little boy could touch so many hearts but especially take hold of mine the way you did. Say hi to Oma and Opa for me. If you have to go on any trips with them, know it will take longer then planned cause they always get lost! I'm sure you are having a blast with your cousin Gavin who I never got to meet. Please give him a hug and a kiss from his aunt who loves him dearly.
Until we are all together again, I hold you in my heart my sweet boy.
Mommy
Friday, February 26, 2010
Thursday, February 25, 2010
Clarification
Someone left a comment on here about something they misread into our posts about Mitochondrial Disease. I feel the need to clear this up since the assumption was completely wrong. NEVER did I say all people with Mito have tracheas. I know for a fact that is NOT the norm. NEVER have I even said that it is due to the Mito itself. My reference to this was rather that this is what docs and people who think of the disease when they hear it. THey automatically think worst case scenario and that is actually NOT the truth. It was just a way to give a more severe look on what the general misinterpretations of this disease are. There is no particular way to look at a person and know they have the disease and that is so important to know.
Never did I say that people with these assisted breathing devices or any other type of assisted device ever suffer because of the devices themselves. I know for a fact that they are a blessing to those who need them. It is rather the fact that people with this disease generally suffer until they get the proper care and assistance they need. There can also be things that come with these devices such as infections and other things like tissue build up that cause pain and trouble for them. This has nothing to do with the partents or the disease directly. Even my children have "suffered" from side effects or complications associated with the dysfunction of whatever system that is being affected.
George suffered with reflux. Yes reflux is not an issue with Mito itself but rather a side effect of the low tone in his tummy that was caused by the issue with Mito. Michael had the same troubles and still has many tummy troubles that plague him. The actual definition of suffer is to feel pain or distress and yes these patients feel these things until they are under control. It is the gross misinterpretation of the word and its use and how it has been used across the years that tends to be an issues. Yes, my children suffer with medical issues that were or were not related to Mito. Everyone "suffers" at some point in their lives!
George did not have an official diagnosis but his older brothers did and he was in worse medical shape then his brothers ever were. I was told by physicians compitent in the field they felt that he had this too. If you know anything about the disease then you know you may have to rely on just a clinical diagnosis rather then hard proof. I am so sick of being told by some people that I don't have a "right" to say he had this because I didn't officially know. That is quite honestly a bunch of crap! I know many people saying they have Mito who have clinical diagnosis yet have not gotten flack like I have. I am not obsessed with the diseas nor do I think that everyone has it. It is part of our lives so yes, i am going to talk about it or reference it when any issue comes up with their health or general well being. It is part of who they are yet it does not define them.
In the end I know my children and George had this disese dispite what anyone says about it. He may have died from an unrelated cause but his life was truly complicated by it and his death very well could have also been complicated by it. We will never know the true cause of his death because by looking at him you could not tell what was wrong even on an autopsy. His death will be labled as SIDS because they don't have any answers and that was exactly what came from the Medical Examiner's own mouth. It does not demean anyone elses fight with this battle for me to say he had this. It stinks for anyone who has it no matter how severe or how unsevere it truly is. Anyone can die at anytime from this disease or complications of it. This sort of attitue is what makes it difficult for those who have it to associate with one another and eventually feel as if they are alienated by those who they feel should or would be the comrads in this fight. No one who has this has it any better then anyone else. There are people fighting severe cases and others fighting less ones and both have the same chance at dying or having complications, we all do.
We are truly blessed to have children who are less affected by the havoc that this disease can cause to a person's body and life. I thank God for that very fact every day but that does not mean I am about to let my guard down and not fight for the things and care they deserve. One simple cold could send them spiraling into something that will threaten their lives and I am not about to sit by and allow that to happen. Yes it could be a "simple cold" but it needs to be watched more carfully. I have been told this by every Mito specialist we have gone to. They are not "Normal" and I cannot ignore that fact because I would just be doing them a gross disservice.
We have gone both ways, lots of docs with lots of input, and hardly any docs with very little input. In the grand scheme of it neither one is any better and both scenarios stink. Whatever happens will happen and I know that but there is a fine line that must be walked when diagnosed with this disease. My kids get the very best care available to them and they deserve that. I have never taken their care into my own hands because I just don't feel comfortable doing that. They may have a slew of docs but that is because they specialize in medicine and their field, I specialize in being a mom. We trust their oppinions unless my instinct tells me something different or they tell me they cannot handle the situation. All, of which, are ok because no one is perfect and we need to put our personal feelings aside for the greater good of those being treated.
I feel for those who have to allow docs to have more input in their lives then they truly want or need but there is a flip side to that coin. It is just as terrible to know there is something wrong and to be ignored or just not be able to pinpoint it dispite your greatest efforts. Both situations are horrible an leave you feeling helpless but also come with the territory. In the end we all do what we feel is right at that very moment. It may not have been the best choice looking back but at the very moment the choice was made it was the right one.
Never did I say that people with these assisted breathing devices or any other type of assisted device ever suffer because of the devices themselves. I know for a fact that they are a blessing to those who need them. It is rather the fact that people with this disease generally suffer until they get the proper care and assistance they need. There can also be things that come with these devices such as infections and other things like tissue build up that cause pain and trouble for them. This has nothing to do with the partents or the disease directly. Even my children have "suffered" from side effects or complications associated with the dysfunction of whatever system that is being affected.
George suffered with reflux. Yes reflux is not an issue with Mito itself but rather a side effect of the low tone in his tummy that was caused by the issue with Mito. Michael had the same troubles and still has many tummy troubles that plague him. The actual definition of suffer is to feel pain or distress and yes these patients feel these things until they are under control. It is the gross misinterpretation of the word and its use and how it has been used across the years that tends to be an issues. Yes, my children suffer with medical issues that were or were not related to Mito. Everyone "suffers" at some point in their lives!
George did not have an official diagnosis but his older brothers did and he was in worse medical shape then his brothers ever were. I was told by physicians compitent in the field they felt that he had this too. If you know anything about the disease then you know you may have to rely on just a clinical diagnosis rather then hard proof. I am so sick of being told by some people that I don't have a "right" to say he had this because I didn't officially know. That is quite honestly a bunch of crap! I know many people saying they have Mito who have clinical diagnosis yet have not gotten flack like I have. I am not obsessed with the diseas nor do I think that everyone has it. It is part of our lives so yes, i am going to talk about it or reference it when any issue comes up with their health or general well being. It is part of who they are yet it does not define them.
In the end I know my children and George had this disese dispite what anyone says about it. He may have died from an unrelated cause but his life was truly complicated by it and his death very well could have also been complicated by it. We will never know the true cause of his death because by looking at him you could not tell what was wrong even on an autopsy. His death will be labled as SIDS because they don't have any answers and that was exactly what came from the Medical Examiner's own mouth. It does not demean anyone elses fight with this battle for me to say he had this. It stinks for anyone who has it no matter how severe or how unsevere it truly is. Anyone can die at anytime from this disease or complications of it. This sort of attitue is what makes it difficult for those who have it to associate with one another and eventually feel as if they are alienated by those who they feel should or would be the comrads in this fight. No one who has this has it any better then anyone else. There are people fighting severe cases and others fighting less ones and both have the same chance at dying or having complications, we all do.
We are truly blessed to have children who are less affected by the havoc that this disease can cause to a person's body and life. I thank God for that very fact every day but that does not mean I am about to let my guard down and not fight for the things and care they deserve. One simple cold could send them spiraling into something that will threaten their lives and I am not about to sit by and allow that to happen. Yes it could be a "simple cold" but it needs to be watched more carfully. I have been told this by every Mito specialist we have gone to. They are not "Normal" and I cannot ignore that fact because I would just be doing them a gross disservice.
We have gone both ways, lots of docs with lots of input, and hardly any docs with very little input. In the grand scheme of it neither one is any better and both scenarios stink. Whatever happens will happen and I know that but there is a fine line that must be walked when diagnosed with this disease. My kids get the very best care available to them and they deserve that. I have never taken their care into my own hands because I just don't feel comfortable doing that. They may have a slew of docs but that is because they specialize in medicine and their field, I specialize in being a mom. We trust their oppinions unless my instinct tells me something different or they tell me they cannot handle the situation. All, of which, are ok because no one is perfect and we need to put our personal feelings aside for the greater good of those being treated.
I feel for those who have to allow docs to have more input in their lives then they truly want or need but there is a flip side to that coin. It is just as terrible to know there is something wrong and to be ignored or just not be able to pinpoint it dispite your greatest efforts. Both situations are horrible an leave you feeling helpless but also come with the territory. In the end we all do what we feel is right at that very moment. It may not have been the best choice looking back but at the very moment the choice was made it was the right one.
Wednesday, February 24, 2010
Hate Shopping
I've come to the conclusion that I hate shopping right now! It just depresses me to go into the store. I went to Target with my mom today and was totally emotinally wiped out by the end of the trip. I would come across things that just reminded me of George. In ever section there was something and I even bought a Precious Moment CD for kids just because it reminded me of him. Whenever we would put him to sleep we turned on his music...he LOVED music. He will never listen to the cd but for whatever reason, I could not leave the store without it.
It is hard to walk through the store and watch those around me as they go about their lives. I feel as if mine has stopped and yet at the same time is forging ahead dragging me in toe. It took everything in me to not cry in the baby section. We needed some new sippy cups for the boys so I had no choice but to go there. With each step in the store, I felt my emotions running through me and just becoming so draining. It is just sad that something I use to like has become such torture!
I did get an email back from the people running the Mito study at the Mayo clinic. It is kind of exciting to be able to be part of it. In some way it makes me feel like we are helping others and those who are yet unborn who will live the life we now lead. They are going to do everything by mail. It won't take all that much to be able to help with this.
I realized that we had banked George's cord blood. There really is no use for it now that is is gone. They said they will be able to use it in their study so I think we may look to do that. I want to call the people at CBR who hold his cord blood. It is kind of hard for me to give that up in a way. In some odd way it is as if that is the only thing I have left that proves he existed and could unlock the key to what happened with him or eventhe metabolic stuff going on with the family. We had donated Michael's and for Josh it just wasn't a thought. Even if George had been a match to his brother's that doesn't mean they would even be able to use it. They would have to endure chemo to get rid of thier own cells an from what I was told it isn't an option for a Mito patient. Chemo can apparently kill them. It isn't something that I have to decide today but it is something I will have to consider.
Most of the day went pretty well. I am waiting to see what happens with the weather. The kids may not have school yet again. We have had way too much snow lately. I'd be glad if we just didn't have anymore and that spring could come. We are working on designing a memorial garden in the back yard. Today I got the stone I ordered for it with George's name. It is just beautiful and I can't wait to put it out there. The next thing I am going to work on is getting angel statues for the garden. I found this beautiful one of a baby sleeping in angel wings. I like the cherubs but some of the ones I have come across are kind of freaky looking. My uncle use to pour concrete but has since moved to Virginia so I am gonna start looking around at the local garden places for things. We just want it to be special and a place we can go when we think of our angel.
It is hard to walk through the store and watch those around me as they go about their lives. I feel as if mine has stopped and yet at the same time is forging ahead dragging me in toe. It took everything in me to not cry in the baby section. We needed some new sippy cups for the boys so I had no choice but to go there. With each step in the store, I felt my emotions running through me and just becoming so draining. It is just sad that something I use to like has become such torture!
I did get an email back from the people running the Mito study at the Mayo clinic. It is kind of exciting to be able to be part of it. In some way it makes me feel like we are helping others and those who are yet unborn who will live the life we now lead. They are going to do everything by mail. It won't take all that much to be able to help with this.
I realized that we had banked George's cord blood. There really is no use for it now that is is gone. They said they will be able to use it in their study so I think we may look to do that. I want to call the people at CBR who hold his cord blood. It is kind of hard for me to give that up in a way. In some odd way it is as if that is the only thing I have left that proves he existed and could unlock the key to what happened with him or eventhe metabolic stuff going on with the family. We had donated Michael's and for Josh it just wasn't a thought. Even if George had been a match to his brother's that doesn't mean they would even be able to use it. They would have to endure chemo to get rid of thier own cells an from what I was told it isn't an option for a Mito patient. Chemo can apparently kill them. It isn't something that I have to decide today but it is something I will have to consider.
Most of the day went pretty well. I am waiting to see what happens with the weather. The kids may not have school yet again. We have had way too much snow lately. I'd be glad if we just didn't have anymore and that spring could come. We are working on designing a memorial garden in the back yard. Today I got the stone I ordered for it with George's name. It is just beautiful and I can't wait to put it out there. The next thing I am going to work on is getting angel statues for the garden. I found this beautiful one of a baby sleeping in angel wings. I like the cherubs but some of the ones I have come across are kind of freaky looking. My uncle use to pour concrete but has since moved to Virginia so I am gonna start looking around at the local garden places for things. We just want it to be special and a place we can go when we think of our angel.
Tuesday, February 23, 2010
Genetics at it's Best
Today was an ok day. It wasn't good and it wasn't bad so I am at least greatful for that. Today we went to Rutgers in New Brunswick to participate in a study they are working on with Tourretts Syndrome. Richard was diagnosed with this when we went to Houston, TX a whie back. I thought the docs were off their rockers until I actually read into it and boy were they right. Having the knowledge made our approach in dealing with Richard completely different. I was so greatful for that diagnosis, I can't even begin to tell you. It gave us a greater understanding of why he was who he was. The diagnosis also pertained to Richard's biological father an explained so much about his issues too.
I am a huge advocate for being part of studies. In the grand scheme of it all I know it won't do much for me or my children. The way I look at it is that it gives those yet unborn a chance to not have to suffer the same fate as that which our family and so many others struggle with daily. If people just dealt with their own issues and didn't think of the greater good then none of us would know anything about diseases we now have cures and treatments for. There is such a need to look past our own needs when these opportunities arise no matter what the disorder or disease may be.
The way that it runs with Rutgers is htat they are basically a bio bank. They collect information an blood and store it so taht other groups can request things based on their studies in order to do research. The study on TS is now going international with requests coming from Japan and other countries. We had to fill out a book for each of us and our family and personal medical history. Of course ours is not simple an when you throw in that Richard has a different father, it really becomes a little more complicated to say the least!
With the recent passing of George, there were bound to be questions reguaring the metabolic issues we have in our family. I wound up talking circles around the psychologist and sparked a huge interest in the genetics doc there who happened to only be on speaker phone due to his own illness. We have had DNA sequencing done to an extent and what has come back, has come back fine. The part that has intrigued them the most is that at this point in time there have been no issues with Richard through clinical and swabs done at St Chris. At this point they have not found any Mito issues with Richard. That being said, there poses many questions from a genetic standpoint where these people are coming from. In order to get an accurate case study they need to have all of this information.
It has truly brought a new light to them and how they are looking at our family. I was told they will be calling me, espeically the genetic doc handling the genetics issues. To say they were intrigued would be an understatement. They asked if they could request medical records on the kids and Hugh and I. The other thing they want to do is talk to the researcher at St Chris running the swab testing. They also asked me about information on the baby and how things happened with him. I told them that shy of what the medical examiner has, there really isn't much in terms of labs or anything for him. On the way home I realized we had banked his cord blood so I don't know if that is something they will need to know.
In the end there was just to much coincidence with the baby passing and his big brother's issues. Whatever happened to him was truly linked to whatever is going on genetically with the other kids. I don't know exactly what is going on with them all but I do know that with it all being sleep related that there is a connection somewhere in all of it. Knowing won't change anything and won't change what happened to him but I don't knwo if it would be able to help some unborn child someday that a stranger has or what about my own grandchildren? There is just more then meets the eye. My kids may "look fine" but there is more that is going on with them. They don't suffer on traches and all the severe issues, they have issues that no one can visibly see or put a name to. Whatever it is, it came as a thief in the night and took my angel.
I just feel that if I can save some other family from knowing our pain then all of this is not in vain. We don't live our lives for this but rather know our lives can help others to live or live better. The only things that these studies require are a few blood draws and a little bit of time answering questions. It has to start somewhere. I know I will not get answers for myself or my family in any of this but I know that had others not been decent enough to do prevous studies, I would not know what is going on with my own kids.
It was kind of odd talking to this man who had a doctorate from Yale. In many ways I was talking way over his head! He was a psyciatrist that knew a lot about TS, ADHD, and OCD. When he asked me how I was handling the baby's passing, I told him that I had my moments but I knew that dispite everything I know I cannot bring him back. I cannot change whatever happened to him and I have to live for those who are here still. He seemed very shocked by my response since we are less then 4 weeks into loosing him. He was also shocked over the relationship that I have with Richard's biological dad. It just all threw him for a loop and he said he wished more people could look at things the way taht I did. I told him my heart is broken but that life goes on and that there is a purpose to everything. He just kept saying he could not believe that I was that together considering all the things that have happened in my life in such a short amount of time. I left there thinking that I can't immagine being any other way.
George was the light of my life. Loosing him just tore me appart. It has made me relook at life and how we cope with it. I know that we are doing what is right and that our angel is looking down on us smiling. My arms ache to hold him and every fiber of my being wishes he was here with me but I know that life goes on for us. Each day is a struggle to figure out how to do that but I know we need to give ourselves time and know that it won't be an easy or fast process. I know that the reason it hurts so much is because we love him that much and that is why it is all so hard. I close my eyes and see him smile and laugh and feel in my heart his very presence, especially when I am having a hard time where I miss him immensly.
I am a huge advocate for being part of studies. In the grand scheme of it all I know it won't do much for me or my children. The way I look at it is that it gives those yet unborn a chance to not have to suffer the same fate as that which our family and so many others struggle with daily. If people just dealt with their own issues and didn't think of the greater good then none of us would know anything about diseases we now have cures and treatments for. There is such a need to look past our own needs when these opportunities arise no matter what the disorder or disease may be.
The way that it runs with Rutgers is htat they are basically a bio bank. They collect information an blood and store it so taht other groups can request things based on their studies in order to do research. The study on TS is now going international with requests coming from Japan and other countries. We had to fill out a book for each of us and our family and personal medical history. Of course ours is not simple an when you throw in that Richard has a different father, it really becomes a little more complicated to say the least!
With the recent passing of George, there were bound to be questions reguaring the metabolic issues we have in our family. I wound up talking circles around the psychologist and sparked a huge interest in the genetics doc there who happened to only be on speaker phone due to his own illness. We have had DNA sequencing done to an extent and what has come back, has come back fine. The part that has intrigued them the most is that at this point in time there have been no issues with Richard through clinical and swabs done at St Chris. At this point they have not found any Mito issues with Richard. That being said, there poses many questions from a genetic standpoint where these people are coming from. In order to get an accurate case study they need to have all of this information.
It has truly brought a new light to them and how they are looking at our family. I was told they will be calling me, espeically the genetic doc handling the genetics issues. To say they were intrigued would be an understatement. They asked if they could request medical records on the kids and Hugh and I. The other thing they want to do is talk to the researcher at St Chris running the swab testing. They also asked me about information on the baby and how things happened with him. I told them that shy of what the medical examiner has, there really isn't much in terms of labs or anything for him. On the way home I realized we had banked his cord blood so I don't know if that is something they will need to know.
In the end there was just to much coincidence with the baby passing and his big brother's issues. Whatever happened to him was truly linked to whatever is going on genetically with the other kids. I don't know exactly what is going on with them all but I do know that with it all being sleep related that there is a connection somewhere in all of it. Knowing won't change anything and won't change what happened to him but I don't knwo if it would be able to help some unborn child someday that a stranger has or what about my own grandchildren? There is just more then meets the eye. My kids may "look fine" but there is more that is going on with them. They don't suffer on traches and all the severe issues, they have issues that no one can visibly see or put a name to. Whatever it is, it came as a thief in the night and took my angel.
I just feel that if I can save some other family from knowing our pain then all of this is not in vain. We don't live our lives for this but rather know our lives can help others to live or live better. The only things that these studies require are a few blood draws and a little bit of time answering questions. It has to start somewhere. I know I will not get answers for myself or my family in any of this but I know that had others not been decent enough to do prevous studies, I would not know what is going on with my own kids.
It was kind of odd talking to this man who had a doctorate from Yale. In many ways I was talking way over his head! He was a psyciatrist that knew a lot about TS, ADHD, and OCD. When he asked me how I was handling the baby's passing, I told him that I had my moments but I knew that dispite everything I know I cannot bring him back. I cannot change whatever happened to him and I have to live for those who are here still. He seemed very shocked by my response since we are less then 4 weeks into loosing him. He was also shocked over the relationship that I have with Richard's biological dad. It just all threw him for a loop and he said he wished more people could look at things the way taht I did. I told him my heart is broken but that life goes on and that there is a purpose to everything. He just kept saying he could not believe that I was that together considering all the things that have happened in my life in such a short amount of time. I left there thinking that I can't immagine being any other way.
George was the light of my life. Loosing him just tore me appart. It has made me relook at life and how we cope with it. I know that we are doing what is right and that our angel is looking down on us smiling. My arms ache to hold him and every fiber of my being wishes he was here with me but I know that life goes on for us. Each day is a struggle to figure out how to do that but I know we need to give ourselves time and know that it won't be an easy or fast process. I know that the reason it hurts so much is because we love him that much and that is why it is all so hard. I close my eyes and see him smile and laugh and feel in my heart his very presence, especially when I am having a hard time where I miss him immensly.
Monday, February 22, 2010
Bad Day
Today has just been a bad day all the way around. Initially things were just as "normal" as can be right now. The phone rang and it was the lady from the SIDS foundation again. I know she means well but lord it sometimes makes it worse when they call you. You could be fine and having a good moment when wham...it hits you like a brick wall that life as you knew it was yet again brought to a screeching hault. She said they are still waiting on the results from the toxicology report and that they keep close contact with the medical examiners office. We have been told by a million different agancies that we will be called the moment the results come in. I know they will show nothing and he will have a finalized death certificate stating SIDS. Part of me will be happy to have a finalization and the other part just dreads it.
That whole thing kind of sent both Hugh and I into a spiral of emotions and moments of missing our man. His picture is above our fire place and just looking at it sometimes makes our hearts ache. I went into his room and just stood there missing him. It is just such a terrible feeling I wish I didn't have to know.
My friend from Germany called me today. I always enjoy talking to her. No matter how much time goes by it is as if none has gone by an I can always be up front with her. She asked me how things were going. I told her it sucked and that we were having a bad day. It sucks that my son is gone an there is nothing I can do about it. She totally understood and just let me be sad and miss him an it was ok.
I have had two emails from friends that read my post yesterday about God only giving you what you can handle. Both of them had similar takes on the phrase. In the general overview, it is ok to be sad and week but God will not leave you whlie you go through this rather then you having to hold it all together. Right now I just don't want to have it together and I don't want to be strong. I'm so sick of being strong and it is ok to know that it is alright for me not to be. Yes I know I have the other kids and by no means am I about to disreguard their needs but shy of providing that, I just want to "be" right now.
I am sad that my son is dead and I miss him with all that I am and that is ok right now. It is when I feel like I have to have it all together all the time that it is hard because I fell as if I am letting others down. Hugh feels very much the same way. From the beginning we have beeen told by many to "be strong". I've come to hate that phrase. We are strong, we are getting up each day and living and that is strong for right now. It is as if it is a sin to be weak in some wierd way. Each day we are able to do more but there are days, like today, where we find things to be hard and I have finally allowed myself to not feel guilty for not having it together all the time and having my moments of weekness.
Of course things only got worse from there. I got a call from the state about Joshua's medicaid. It took me 3 years to get it and to set up his trust fund so it would not affect his eligibility. Well dispite all my efforts it was just my luck that it has become an issue. Apparently the trust fund is not written to their standards. I now have to get a hold of the lawyer who wrote it and get them to rewrite it. As of the way it stands now, he will no longer have insurance as of March 31st unless I can get this all situated. I really just did not need this now. It kills me that I do things the way they are suppose to be done and still have issues. I've watched as others don't have these issues and use the system and they get whatever they want and it truly burns me up! Those are the people who make it difficult for people like me and that makes me so mad. We have a call into the lawyer and the lady from Medicaid sending me a check list of things that need to be adressed in the trust. I could really not have this added to things right now but it is just my luck.
Tomorrow Richard, his dad, and I are going to Rutgers. We are participating in a study for Tourretts Syndrome. There were these books we had to fill out with tons of questions. We will have an interview with the physician running the research and also blood draws. They are going to be holding the things they collect at Rutgers for international use and study of the disorder. I've also found a similar study being done with Mito out at the Mayo Clinic. I contacted them to see what they will need for their study.
If people like us don't help with these things then they will never get anywhere with it. There is nothing invasive one with these studys and they are usually only a one time thing so I figure it can't hurt and can maybe save another parent the torture and things we have gone through to get the kids diagnosed and the proper care or just a better understanding of why there is such variations within the disease. No we are not obsessed with it by any means but if we all ignored the fact there needs to be more done then nothing would ever happen and those yet undiagnosed would continue to live the hell of this disease with no hope in sight. I know for people like me who find this pertinent, it is as if there is something good coming of a bad situation.
I'm hoping for a better day tomorrow. Hopefully by the end of the day tomorrow I will be able to have links to the baby's service up and running for anyone who wants to watch it and did not get to go. There has been a few snags with that so it is taking longer then initially expected. It was so beautiful and I was so greatful to have been able to make it so special for our little man.
I miss you my little monkey!
That whole thing kind of sent both Hugh and I into a spiral of emotions and moments of missing our man. His picture is above our fire place and just looking at it sometimes makes our hearts ache. I went into his room and just stood there missing him. It is just such a terrible feeling I wish I didn't have to know.
My friend from Germany called me today. I always enjoy talking to her. No matter how much time goes by it is as if none has gone by an I can always be up front with her. She asked me how things were going. I told her it sucked and that we were having a bad day. It sucks that my son is gone an there is nothing I can do about it. She totally understood and just let me be sad and miss him an it was ok.
I have had two emails from friends that read my post yesterday about God only giving you what you can handle. Both of them had similar takes on the phrase. In the general overview, it is ok to be sad and week but God will not leave you whlie you go through this rather then you having to hold it all together. Right now I just don't want to have it together and I don't want to be strong. I'm so sick of being strong and it is ok to know that it is alright for me not to be. Yes I know I have the other kids and by no means am I about to disreguard their needs but shy of providing that, I just want to "be" right now.
I am sad that my son is dead and I miss him with all that I am and that is ok right now. It is when I feel like I have to have it all together all the time that it is hard because I fell as if I am letting others down. Hugh feels very much the same way. From the beginning we have beeen told by many to "be strong". I've come to hate that phrase. We are strong, we are getting up each day and living and that is strong for right now. It is as if it is a sin to be weak in some wierd way. Each day we are able to do more but there are days, like today, where we find things to be hard and I have finally allowed myself to not feel guilty for not having it together all the time and having my moments of weekness.
Of course things only got worse from there. I got a call from the state about Joshua's medicaid. It took me 3 years to get it and to set up his trust fund so it would not affect his eligibility. Well dispite all my efforts it was just my luck that it has become an issue. Apparently the trust fund is not written to their standards. I now have to get a hold of the lawyer who wrote it and get them to rewrite it. As of the way it stands now, he will no longer have insurance as of March 31st unless I can get this all situated. I really just did not need this now. It kills me that I do things the way they are suppose to be done and still have issues. I've watched as others don't have these issues and use the system and they get whatever they want and it truly burns me up! Those are the people who make it difficult for people like me and that makes me so mad. We have a call into the lawyer and the lady from Medicaid sending me a check list of things that need to be adressed in the trust. I could really not have this added to things right now but it is just my luck.
Tomorrow Richard, his dad, and I are going to Rutgers. We are participating in a study for Tourretts Syndrome. There were these books we had to fill out with tons of questions. We will have an interview with the physician running the research and also blood draws. They are going to be holding the things they collect at Rutgers for international use and study of the disorder. I've also found a similar study being done with Mito out at the Mayo Clinic. I contacted them to see what they will need for their study.
If people like us don't help with these things then they will never get anywhere with it. There is nothing invasive one with these studys and they are usually only a one time thing so I figure it can't hurt and can maybe save another parent the torture and things we have gone through to get the kids diagnosed and the proper care or just a better understanding of why there is such variations within the disease. No we are not obsessed with it by any means but if we all ignored the fact there needs to be more done then nothing would ever happen and those yet undiagnosed would continue to live the hell of this disease with no hope in sight. I know for people like me who find this pertinent, it is as if there is something good coming of a bad situation.
I'm hoping for a better day tomorrow. Hopefully by the end of the day tomorrow I will be able to have links to the baby's service up and running for anyone who wants to watch it and did not get to go. There has been a few snags with that so it is taking longer then initially expected. It was so beautiful and I was so greatful to have been able to make it so special for our little man.
I miss you my little monkey!
Sunday, February 21, 2010
Having Moments
Each of us are having our moments each day. The past two days have been rather difficult for me. I think it has just been bugging me that we all prepare for life but not death. We have been met with many people who just don't "get it" You know they mean well but lord knows in the midst of all of the pain and grief you just sometimes don't have the patience to deal with that. I think that is the very reason that loosing a child makes you feel very alienated from the world and as if everyone elses lives are going on while yours stands still.
We went to church today and it is one of the places that I feel comfortable for some reason. I don't think I am met with looks of pitty and people there understand without having to be told or pacified. We can just "be" and it is ok to just be that. It also helps that part of our little man is laid to rest in their memorial garden and I just somehow feel closer to him when I am there. Many times I felt the sun beaming in the window during the service and could just feel his presence there with me letting me know it was ok.
It is funny how people either ask you how you are doing or don't ask because they just don't knwo what to say or do. The dynamics of grief and death have truly facinated me over the past few weeks as we watch people try to come to terms with it and handle something like this. When you are asked how you are doing, many times you just want to say "alive" and that is good for now. You know if you say that,that the person would feel bad or just not know what to say so a good portion of the time you say ok or as good as can be expected. I have yet to decide what is better someone asking or someone not...it is such an odd thing to really have to deal with.
Today I ordered the pendants for Hugh and I to put some of the baby's ashes into. In some way it will be as if I can always have a piece of him with me. It sounds kind of odd but both of us find some solice in that. I also ordered a stepping stone for the memorial garden we want to put in our back yard. It has a beatuiful saying on it and will have his name and dates on it.
We are looking forward to finally having a purpose for that one spot in the yard that was not finished with Joshua's project. It was a spot our trampoline was suppose to be in but it wound up being broken and we could not repair it. I also emailed the nursery that helped with Josh's project to inquire about yellow roses to plant in it and some other plants. For whatever reason, yellow roses remind me of my angel. I even bought some at the store for myself the other day and took one to lay at the place he was laid to rest at our church today.
It amazes me also how we have found and lost friends throughout this whole process. People we expected to be there for us just weren't and others who we never anticipated filled the void. I had a friend I grew up with send me a beautiful momento box that had monkeys on it with a place for a picture in it. We played softball together and her mom even showed up at the service. We have not spoken in years. Another friend I went to high school and his wife were at the service. Hugh and I both knew the two of them. Hugh went to school with the wife and I went to school with the husband. It was so odd but there is too much conincidence in all of it for us to not keep in touch and fordge this relationship. I also had friends I grew up with from a very young age, who lost their mother recently, show up, and we have not spoken in years.
I know that George had a purpose here and have been told by many that he touched their lives in some way. My friend quit his second job just to spend time with his family. Many other things have come to fruition since his passing that we are so greatful for and know that God has had his hands in this from the very beginning dispite our knowledge. I can't say that I am not upset about it all and that it took him dying to make these changes in peoples lives but I am also greatful that it did and his death was not in vain. There are moments when I am so mad about it all and that I just want him back with us but I know I cannot have that. I hate to always be the "one who understands" and always has these things happen to me. In the end, I know I am a stronger person and that if this happened to someone else they would not be able to handle it. I always hate when people say God only gives you what you can handle...sometimes I want to knwo what in the world he is thinking!!!
I've been coping a lot through music and by just being home with my family. The boys are their own sort of therapy. Hugh and I have always had a strong relationship(dispite a few ups and downs like everyone) but we have found ourselves to become even closer. I never thought that I could love him any more but somehow find that it is possible. He is such a wonderful person and I know we are blessed to have one another. I know that our lives have been changed forever and we are now part of a club we never wanted to be a member of. Each of us is handling this in our own way but dispite that we are becoming closer in so many ways.
The one fact that probably hurts the most is that we will always feel this terrible loss for the rest of our lives. No matter how many lives are changed due to this and all the good that has come of it, we will forever have part of us missing. The very thought of that is so overwhelming and saddens me greatly. There is no waking from the nightmare, there is just coping and living dispite the fact that you will always have this hole in your heart or yearning for something you will not have again in your lifetime. We have become one of the statistics as Hugh said today. Every day parents are loosing children, it is just now we are part of that group and can never go back. We will continue to do our best to "live" and serve our purpose here until we are called home ourselves. We no longer fear dying for we know when our day comes, we will be whole again. The very thought of that is just so awsome that all fears are laid to rest...it took our 4 month old to teach us both that lesson.
We went to church today and it is one of the places that I feel comfortable for some reason. I don't think I am met with looks of pitty and people there understand without having to be told or pacified. We can just "be" and it is ok to just be that. It also helps that part of our little man is laid to rest in their memorial garden and I just somehow feel closer to him when I am there. Many times I felt the sun beaming in the window during the service and could just feel his presence there with me letting me know it was ok.
It is funny how people either ask you how you are doing or don't ask because they just don't knwo what to say or do. The dynamics of grief and death have truly facinated me over the past few weeks as we watch people try to come to terms with it and handle something like this. When you are asked how you are doing, many times you just want to say "alive" and that is good for now. You know if you say that,that the person would feel bad or just not know what to say so a good portion of the time you say ok or as good as can be expected. I have yet to decide what is better someone asking or someone not...it is such an odd thing to really have to deal with.
Today I ordered the pendants for Hugh and I to put some of the baby's ashes into. In some way it will be as if I can always have a piece of him with me. It sounds kind of odd but both of us find some solice in that. I also ordered a stepping stone for the memorial garden we want to put in our back yard. It has a beatuiful saying on it and will have his name and dates on it.
We are looking forward to finally having a purpose for that one spot in the yard that was not finished with Joshua's project. It was a spot our trampoline was suppose to be in but it wound up being broken and we could not repair it. I also emailed the nursery that helped with Josh's project to inquire about yellow roses to plant in it and some other plants. For whatever reason, yellow roses remind me of my angel. I even bought some at the store for myself the other day and took one to lay at the place he was laid to rest at our church today.
It amazes me also how we have found and lost friends throughout this whole process. People we expected to be there for us just weren't and others who we never anticipated filled the void. I had a friend I grew up with send me a beautiful momento box that had monkeys on it with a place for a picture in it. We played softball together and her mom even showed up at the service. We have not spoken in years. Another friend I went to high school and his wife were at the service. Hugh and I both knew the two of them. Hugh went to school with the wife and I went to school with the husband. It was so odd but there is too much conincidence in all of it for us to not keep in touch and fordge this relationship. I also had friends I grew up with from a very young age, who lost their mother recently, show up, and we have not spoken in years.
I know that George had a purpose here and have been told by many that he touched their lives in some way. My friend quit his second job just to spend time with his family. Many other things have come to fruition since his passing that we are so greatful for and know that God has had his hands in this from the very beginning dispite our knowledge. I can't say that I am not upset about it all and that it took him dying to make these changes in peoples lives but I am also greatful that it did and his death was not in vain. There are moments when I am so mad about it all and that I just want him back with us but I know I cannot have that. I hate to always be the "one who understands" and always has these things happen to me. In the end, I know I am a stronger person and that if this happened to someone else they would not be able to handle it. I always hate when people say God only gives you what you can handle...sometimes I want to knwo what in the world he is thinking!!!
I've been coping a lot through music and by just being home with my family. The boys are their own sort of therapy. Hugh and I have always had a strong relationship(dispite a few ups and downs like everyone) but we have found ourselves to become even closer. I never thought that I could love him any more but somehow find that it is possible. He is such a wonderful person and I know we are blessed to have one another. I know that our lives have been changed forever and we are now part of a club we never wanted to be a member of. Each of us is handling this in our own way but dispite that we are becoming closer in so many ways.
The one fact that probably hurts the most is that we will always feel this terrible loss for the rest of our lives. No matter how many lives are changed due to this and all the good that has come of it, we will forever have part of us missing. The very thought of that is so overwhelming and saddens me greatly. There is no waking from the nightmare, there is just coping and living dispite the fact that you will always have this hole in your heart or yearning for something you will not have again in your lifetime. We have become one of the statistics as Hugh said today. Every day parents are loosing children, it is just now we are part of that group and can never go back. We will continue to do our best to "live" and serve our purpose here until we are called home ourselves. We no longer fear dying for we know when our day comes, we will be whole again. The very thought of that is just so awsome that all fears are laid to rest...it took our 4 month old to teach us both that lesson.
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Me With My Prince Charming In Front of the Castle
