Today seemed like it was the longest day ever. It was such a busy and long day. I had a terrible night of sleep and tried to go back to sleep earlier in the morning. It just wasn't working so I just got up to start the day. Hugh went to help my dad finish putting up his privacy fence and took the boys to visit with my mom. I stayed home and began to clean up the house.
I started to clean and pick up and found myself going through the baby's stuff. There is a woman who has offered to take some of his things and turn them into a memory quilt. I decided it was time to go through his things and pick the items out that we wanted so that we could get them to her so she could begin to work on it. My god it was the hardest thing I have ever had to do in my life. I began to look at all his things and cry knowing that most of it was either new or barely used. He had clothes that still had tags on them that we got him for Christmas. There were toys that he never played with. It was one of the hardest things I have ever had to do in my life.
I prayed before I started it all to be able to know what to send. It took me a while but I think that I finally have the things we want to send her other then George's monkey towel for Hugh since he always gave him his baths. We put in a few of his blankets, his first Thanksgiving and Christmas outfits, his Phillies shirt, and several other articles of clothing that had special sentiment like the outfit we brought him home in. I know that eventually we will have to find a new home for all of his things. That is probably the hardest thing...what do you do with your childs things after they die? I'm going to keep praying about that until I feel comfortable with whatever it is that we decide.
Ken, the boys old ped, came over to visit today. It was nice to see him. I am so releived to have some dates to call the nurse with from Virtua and will begin to collect materials for the in service. I'm amazed at how willing they are to learn about this and I am so glad that we can make a difference. It is not going to change the world but I feel one more person who is educated is one more step towards a cure someday. Ken talked to both Hugh and I for a while and is always a great support in so many ways. We are so lucky to have him in our lives as a friend and surogate family member.
Of course our life is never dull. While Ken was here, I was inside talking to him and Hugh was outside with the kids and Richard's dad. Soon Josh came running in the house telling me that Michael just puked all over the inside of the van. I had no idea waht he was talking about until Michael came straggling through the door covered in it anc crying. I could not figure why. At first I thought it was the chocolate ice cream not agreeing with his tummy, but I could nto get over the fact he smelled like flowers. I put him in the tub and kept asking Josh what they were doing.
We came to find out that he had actually drank the flid from the car airwick air freshner I had put in there weeks ago. That of course sent us on a frenzy. I was taking care of Michael while Hugh called poison control. Thankfully we didn't have to do much...he had already thrown up so we just had to get him to drink milk. I just wanted to cry and you could see in Hugh's face the stress all come crashing down on his shoulders. The past several weeks have just been pure hell and he has been holding it all together until them. His face just spoke volumes.
Ken could tell this and started to talk to him and he just kept saying he needs a break away without the kids. Right now we can't afford it but hopefully in the next week or so we can get away even if it is only for the weekend. He really needs a night away in the worst way. It isn't the same if we stay here. There will always be something here for us to feel like we need to do and just the general memories that come with being at home. Ken has always been concerned about us keeping an open relationship since he saw his fall appart before his eyes and it was too late before he realized it. He never wants to see us suffer that same fate. It was good to have him talk to Hugh since when I talk to him it sounds like I am nagging but in reality I just care.
My parents even stopped by today. That was a huge thing. My mom doen't usually go out unless it is to a store. A few times she has come over but usually for a party or something. You should have seen the look on the kids faces when she walked in the door. Josh just kept saying...you are at my house!!! Boy they were excited and of course he wanted to go home with her. My dad drove the car home and my mom followed Josh on his bike.
Joshua is getting so big. Over the past few weeks he has grown up so much. He now dresses himself from head to toe. He is working on toilet training and doing wonderful with it. Tonight he slept the night at my mom's house. It is as if he is becomign a big boy over night. Suddenly, the little boy that I carried is now growing up in the blink of an eye. Michael is doing the same but he is still little and has an immaturity about him for now. I'm still greatful that Michael is younger and loves to cuddle and has that need for us still. I sat and watched the movie the Princess and the Frog with him tonight.
When I was not dealing with insanity, I was looking up information on dogs. That sounds like a lot but I am considering looking into a service dog for the boys. They have ones that can detect issues with the person when no one else can, especially seizures. I was always against pets but after more research I think a dog would be such a good companion and helper for the boys. There is so much info out there and I have to keep researching it but I think we would just feel better knowing that we have an extra set of eyes and ears on the boys, especially after today!!!
We really don't want a big dog though and may even consider just a small dog as a companion for them. Michael is terrified of big dogs and animals although he loves little ones. I always avoided pets for the amount of work that is needed but I have this pressing feeling on my heart that this is the way to go with the kids right now. There has also been a lot of people with tourretts that see benefits of having a dog so this could be good for everyone. We will see where God leads us and if this is meant to be we will come across the right people.
Tomorrow we have church. Richard is serving again and will also serve next week. This time of year is very busy with our church. I'm very greatful for that due to many reasons. I hope that tomorrow is not as crazy as today was because I think we need an emotional break from drama but we cannot seem to get away from it!
Saturday, March 20, 2010
Friday, March 19, 2010
Trip to the ER 7 Weeks Later
Today we had our first trip back to the ER since George died. It was unexpected and my heart dropped when the doctor told us we needed to go there. It was for Hugh, not the boys so I was greatful for that. The very thought of returning to the place we lost our little boy just brought so much anxiety to me. There was nothing I could do and I guess it was God's way of making me face it head on...he is really getting me kind of mad when he pulls this stuff! I really could use a break from the chaos that always seems to follow us wherever we go.
Yesterday Hugh and my dad were putting up fence but had to work on a tree stump that was in my parents yard. The tree had fallen over in the recent storm and just made it easer for my parents to finally put up the privacy fence they have wanted for a while. Somewhere between the time we finally went home and the trip to his friends house for a night of relaxation, his eye started to bother him. When he finally got home I looked at it and didn't really like what I saw. I flushed it with solution and saw no particles so I put in an antibiotic drop and told him if it was not somewhat better in the morning he was going to the docs.
We got to the doctors office after hunting for a doc to take the insurance to only be told he needed to go to the ER. He had a corneal abrasion but the doc could not tell if there was any particles in his eye. The office could not find an eye doc in 50 miles that took the insurance and the people from the insurance company were useless. That meant only one thing...a trip to the ER. I think that both of our hearts fell to out stomach when we heard this. It was a new doc so he had no idea what had happened and what he was really asking us to do.
We pulled up to the hospital and that sinking feeling sat in the pit of my stomach. I had to drop Hugh off since there were no parking spots and then valet park the van. I walked around and came to those doors that I walked in the last time I held my little boy and walking in the door just took everything I had in me to do it. It was a step I needed to take but not one I was prepared for. Unfortunately, it was out of my control.
Both Hugh and I did really well with it all. I thought it was going to be harder then it was. Ironically, the staff was there that helped us when we brought George in. They had all gotten the monkeys I sent them earlier in the AM. Jen, the girl I knew from when I was growing up who was the one doing George's chest compressions, saw us and came in and started to talk to us. At first she didn't know what to say or how to really talk to us but once we got over the akwardness, it was a good thing for us. She lives down the street from us with her parents while they are waiting to settle on their house.
She told us that they had wanted to come to the service but didn't want to upset us that day. We told her that the web page on my letter was where they could watch his service and catch up with our family if they want to. She also told me the woman who I had spoken with yesterday about the in service was there and she was going to tell her if it was ok with us. We finally met her and I told her that Dr. Hirsch called and said he was on board with it and that he was coming over tomorrow and I would talk to him about it all. They told me that the ER staff was all excited about it and ready to really learn about it all. I can't tell you what peace I found in that. It meant that his life and death had true meaning behind it not just to us but to others.
We finally got home and put the kids to bed. They wanted a drink and what do I come across, two of George's baby bottles. I thought I had gotten all of them out of my cabinet but they weren't. Then I was on the phone when my mom accidentally asked me if I wanted her to invite a family member to "the baby's party" and I just started to cry. All of the days events coupled with it being 7 weeks now, I just couldn't hold it in anymore. I know she meant Michael but he is not my baby, George was my baby. She felt horrible and I know she didn't mean it but it was just so hard to hear.
This has just been one day of emotional roller coasters and I really thought that it wouldn't be that way. The past few days have been "good days" and the morning was ok so I thought this would be my first Friday that I would get through without feeling horrible. Boy was I wrong!!! These are the days I ask God what in the world he is thinking and how much more does he really think we can handle. Where in the world is our break from this all? In the end we will get through this too and at least we know there is hope for good to come out of this all in the end.
Yesterday Hugh and my dad were putting up fence but had to work on a tree stump that was in my parents yard. The tree had fallen over in the recent storm and just made it easer for my parents to finally put up the privacy fence they have wanted for a while. Somewhere between the time we finally went home and the trip to his friends house for a night of relaxation, his eye started to bother him. When he finally got home I looked at it and didn't really like what I saw. I flushed it with solution and saw no particles so I put in an antibiotic drop and told him if it was not somewhat better in the morning he was going to the docs.
We got to the doctors office after hunting for a doc to take the insurance to only be told he needed to go to the ER. He had a corneal abrasion but the doc could not tell if there was any particles in his eye. The office could not find an eye doc in 50 miles that took the insurance and the people from the insurance company were useless. That meant only one thing...a trip to the ER. I think that both of our hearts fell to out stomach when we heard this. It was a new doc so he had no idea what had happened and what he was really asking us to do.
We pulled up to the hospital and that sinking feeling sat in the pit of my stomach. I had to drop Hugh off since there were no parking spots and then valet park the van. I walked around and came to those doors that I walked in the last time I held my little boy and walking in the door just took everything I had in me to do it. It was a step I needed to take but not one I was prepared for. Unfortunately, it was out of my control.
Both Hugh and I did really well with it all. I thought it was going to be harder then it was. Ironically, the staff was there that helped us when we brought George in. They had all gotten the monkeys I sent them earlier in the AM. Jen, the girl I knew from when I was growing up who was the one doing George's chest compressions, saw us and came in and started to talk to us. At first she didn't know what to say or how to really talk to us but once we got over the akwardness, it was a good thing for us. She lives down the street from us with her parents while they are waiting to settle on their house.
She told us that they had wanted to come to the service but didn't want to upset us that day. We told her that the web page on my letter was where they could watch his service and catch up with our family if they want to. She also told me the woman who I had spoken with yesterday about the in service was there and she was going to tell her if it was ok with us. We finally met her and I told her that Dr. Hirsch called and said he was on board with it and that he was coming over tomorrow and I would talk to him about it all. They told me that the ER staff was all excited about it and ready to really learn about it all. I can't tell you what peace I found in that. It meant that his life and death had true meaning behind it not just to us but to others.
We finally got home and put the kids to bed. They wanted a drink and what do I come across, two of George's baby bottles. I thought I had gotten all of them out of my cabinet but they weren't. Then I was on the phone when my mom accidentally asked me if I wanted her to invite a family member to "the baby's party" and I just started to cry. All of the days events coupled with it being 7 weeks now, I just couldn't hold it in anymore. I know she meant Michael but he is not my baby, George was my baby. She felt horrible and I know she didn't mean it but it was just so hard to hear.
This has just been one day of emotional roller coasters and I really thought that it wouldn't be that way. The past few days have been "good days" and the morning was ok so I thought this would be my first Friday that I would get through without feeling horrible. Boy was I wrong!!! These are the days I ask God what in the world he is thinking and how much more does he really think we can handle. Where in the world is our break from this all? In the end we will get through this too and at least we know there is hope for good to come out of this all in the end.
Thursday, March 18, 2010
God is Good
Today was a good day...wow, I never thought I would say that. We sent out our thank you notes earlier this week. It took so much for me to get the energy and to get past my grief to be able to do this. We had so much love and support that I just could not go without sending them. We got some beautiful cards made up from Costco and I bought an extra pack of blank cards in case I ran out of the photo cards and to also use for people I just wanted to write something to who went above and beyond to help us out.
One of the cards we had recieved was from the ER where George died. I cannot tell you how much they were touched by him and our family so I just felt the need to send them a small care package. It had some cards from his service and a few pins for the nurses who were there when George was baptized. I also added in some literature about Mito. No matter what his cause of death is, I realized how uninformed and unprepared they are to handle someone with the disease. Should Josh or Michael ever need to go they would just be unequipt to handle it. They were so lost and asking me what they needed to do because they didn't know and I just felt so helpless and so did they.
I do not fault them for not knowing, they cannot be expected to know everything. In an age where people are sue happy, they are even afraid to ask questions to make it seem as if they don't know. Money will never bring my son back so I would rather take the time to educate them to hopefully save someone else the chaos and pain we felt the day he was brought into their ER. Never did I expect to honestly hear back from the woman that I sent the package to.
Today I got a phone call from her thanking me for taking the time to do that and to let me know how much they appreciate it. I told her my concern for education and she was absolutely on board with me. She asked me to see if Ken, the boys old ped would work with us so we could make it an inservice. I've got an email into him to inqure about it. Should this work out, I want to look into reaching out to other local hospitals. I cannot change the world or educate everyone but it has to start somewhere. With the hospital willing to work with me, I feel as if my little boys life has so much more meaning then I even thought it did before.
Please pray for us and this project of mine. I know that God will lead me if this is where he wants me to be.
One of the cards we had recieved was from the ER where George died. I cannot tell you how much they were touched by him and our family so I just felt the need to send them a small care package. It had some cards from his service and a few pins for the nurses who were there when George was baptized. I also added in some literature about Mito. No matter what his cause of death is, I realized how uninformed and unprepared they are to handle someone with the disease. Should Josh or Michael ever need to go they would just be unequipt to handle it. They were so lost and asking me what they needed to do because they didn't know and I just felt so helpless and so did they.
I do not fault them for not knowing, they cannot be expected to know everything. In an age where people are sue happy, they are even afraid to ask questions to make it seem as if they don't know. Money will never bring my son back so I would rather take the time to educate them to hopefully save someone else the chaos and pain we felt the day he was brought into their ER. Never did I expect to honestly hear back from the woman that I sent the package to.
Today I got a phone call from her thanking me for taking the time to do that and to let me know how much they appreciate it. I told her my concern for education and she was absolutely on board with me. She asked me to see if Ken, the boys old ped would work with us so we could make it an inservice. I've got an email into him to inqure about it. Should this work out, I want to look into reaching out to other local hospitals. I cannot change the world or educate everyone but it has to start somewhere. With the hospital willing to work with me, I feel as if my little boys life has so much more meaning then I even thought it did before.
Please pray for us and this project of mine. I know that God will lead me if this is where he wants me to be.
Wednesday, March 17, 2010
Beautiful Weather
The past two days have just been beautiful outside. It has just been wonderful for the little boys since this is their time of year. Heat tolerance is a huge issue for them both so it has been so nice to not have to run after them with cooling vests and worry about their temps rising. Michael has already started with the red cheeks even in 64 degree weather! They have been outside the moment the can drag Hugh or I out the door.
It brings much joy but also some sadness. I always thought I would be able to take George outside on days like these and go for walks. It just saddens me to know he never got to see my favorite time of the year. Hugh and I had bought him a new stroller just to be able to be out and about on days like today. He barely used the car seat that went with the stroller and if we used the stroller once or twice we were lucky! It makes my heart happy to see the boys enjoying themselves but also makes me realize that missing part that will forever be missing.
Hugh and I have began to plan the memorial garden for George. We want the plants to be able to come back each year so we are not having to constantly replant things. His little corner of our yard will have lots of yellow, white, and orange flowers in it. I bought a few bulbs at Walmart the other day to start us off. His stone came in a while ago(it is just beautiful) and I have one angel statue. I found a beautiful fountain that we want to put in the center with his stone. It is going to be beautiful and a place we can go to and find peace and feel close to him.
The past two nights I have been having dreams of him. For a while I wasn't having any with him in it and it was quite disappointing. Going to sleep just brought anxiety because I would wake up and have a panic attack just around the time we found him. I still have them randomly but they are getting fewer and further between. Now sleep brings me close to him. I can hold him in my dreams and be his mommy. I can kiss him and hug him. It is only temporary but it is so real and for that time I have total peace. I see his face in my mind so vividly and it is as if I am really holding him. Daylight comes and I wake to my new reality but am so grateful for the moments of sleep where I can escape the hell of not having him here.
Today I had to bad moments from really stupid things that triggered them. I was in a cleaning mood with the weather being so nice and having not cleaned since he died. There is so much that has to be done but I have found it hard to have the energy or desire to do any of it. My goal was to clean the kitchen. I started to work on it and as i was going through the refrigerator I found a half eaten jar of baby food tucked in the way back corner. I just sat there and cried. Who would have ever thought a stupid jar of baby food would make you cry like that.
My other experience today was tonight. I was taking a shower and getting my pajamas on. On the sink was his bottle of baby shampoo. Earlier in the week I had cleaned hte bathroom and put all of that stuff away. I knew it was still under the sink but to find it partially empty on the sink just did me in. Hugh had ran out of the little boys regular stuff and forgot to tell me so he just used the baby's stuff. It just made me so sad. I just miss him so much.
A little while ago I got an email from a woman who came into our lives when we did Joshua's first fundraiser. Her granddaughter had been diagnosed with Mito and she read the article in the newspaper about Josh and got a hold of me. Since then we have still kept in touch. Her granddaughter has always had a lot of complications. She was so dumbfounded when she met with us and saw my kids running all over the place when that was not her experience with the disease. I have thought a lot about them over the past few weeks especially since her granddaughters disease is progressing and I know they hold their breath every single day.
Recently her daughter was also diagnosed with the disease. My heart goes out to them all. They all knew in their hearts that she had it too but seeing it in black and white is just something that takes your breath away. I remember the day I got Josh's results in the mail and how I just cried even though I knew that was what was going to come back. You just can't prepare for that moment. It is kind of like when you get the disease diagnosis, you know the worst case scenario and try to prepare for it. I can honestly say, we have lived the worst case scenario(death) and you can never prepare for any of it. My heart goes out to their family as they mourn their dream of the lives they had planned for themselves and one another. May God give them all the strength they need while they go through this road set before them.
Tomorrow night Hugh is finally going out to try and relax with a friend of his. I am so glad he is going out. He really needs and deserves it. I am so lucky to have him in my life and I thank God for him every day. He is such a wonderful husband and father. We have our moments just like anyone else does but each one of them brings us closer in the end even if temporary we distanced ourselves. For many couples, they find themselves pulling appart from one another when they go through something like this. Fortunately, we are doing the opposite. Just when I think we cannot get any closer or have a better relationship, something proves me wrong. We are both hurting terribly but we are also both very strong and draw from one anthers strengths where we are weak. God truly blessed me the day he put Hugh in my life and I thank him for that every single day. I can't immagine where I would be without him.
It brings much joy but also some sadness. I always thought I would be able to take George outside on days like these and go for walks. It just saddens me to know he never got to see my favorite time of the year. Hugh and I had bought him a new stroller just to be able to be out and about on days like today. He barely used the car seat that went with the stroller and if we used the stroller once or twice we were lucky! It makes my heart happy to see the boys enjoying themselves but also makes me realize that missing part that will forever be missing.
Hugh and I have began to plan the memorial garden for George. We want the plants to be able to come back each year so we are not having to constantly replant things. His little corner of our yard will have lots of yellow, white, and orange flowers in it. I bought a few bulbs at Walmart the other day to start us off. His stone came in a while ago(it is just beautiful) and I have one angel statue. I found a beautiful fountain that we want to put in the center with his stone. It is going to be beautiful and a place we can go to and find peace and feel close to him.
The past two nights I have been having dreams of him. For a while I wasn't having any with him in it and it was quite disappointing. Going to sleep just brought anxiety because I would wake up and have a panic attack just around the time we found him. I still have them randomly but they are getting fewer and further between. Now sleep brings me close to him. I can hold him in my dreams and be his mommy. I can kiss him and hug him. It is only temporary but it is so real and for that time I have total peace. I see his face in my mind so vividly and it is as if I am really holding him. Daylight comes and I wake to my new reality but am so grateful for the moments of sleep where I can escape the hell of not having him here.
Today I had to bad moments from really stupid things that triggered them. I was in a cleaning mood with the weather being so nice and having not cleaned since he died. There is so much that has to be done but I have found it hard to have the energy or desire to do any of it. My goal was to clean the kitchen. I started to work on it and as i was going through the refrigerator I found a half eaten jar of baby food tucked in the way back corner. I just sat there and cried. Who would have ever thought a stupid jar of baby food would make you cry like that.
My other experience today was tonight. I was taking a shower and getting my pajamas on. On the sink was his bottle of baby shampoo. Earlier in the week I had cleaned hte bathroom and put all of that stuff away. I knew it was still under the sink but to find it partially empty on the sink just did me in. Hugh had ran out of the little boys regular stuff and forgot to tell me so he just used the baby's stuff. It just made me so sad. I just miss him so much.
A little while ago I got an email from a woman who came into our lives when we did Joshua's first fundraiser. Her granddaughter had been diagnosed with Mito and she read the article in the newspaper about Josh and got a hold of me. Since then we have still kept in touch. Her granddaughter has always had a lot of complications. She was so dumbfounded when she met with us and saw my kids running all over the place when that was not her experience with the disease. I have thought a lot about them over the past few weeks especially since her granddaughters disease is progressing and I know they hold their breath every single day.
Recently her daughter was also diagnosed with the disease. My heart goes out to them all. They all knew in their hearts that she had it too but seeing it in black and white is just something that takes your breath away. I remember the day I got Josh's results in the mail and how I just cried even though I knew that was what was going to come back. You just can't prepare for that moment. It is kind of like when you get the disease diagnosis, you know the worst case scenario and try to prepare for it. I can honestly say, we have lived the worst case scenario(death) and you can never prepare for any of it. My heart goes out to their family as they mourn their dream of the lives they had planned for themselves and one another. May God give them all the strength they need while they go through this road set before them.
Tomorrow night Hugh is finally going out to try and relax with a friend of his. I am so glad he is going out. He really needs and deserves it. I am so lucky to have him in my life and I thank God for him every day. He is such a wonderful husband and father. We have our moments just like anyone else does but each one of them brings us closer in the end even if temporary we distanced ourselves. For many couples, they find themselves pulling appart from one another when they go through something like this. Fortunately, we are doing the opposite. Just when I think we cannot get any closer or have a better relationship, something proves me wrong. We are both hurting terribly but we are also both very strong and draw from one anthers strengths where we are weak. God truly blessed me the day he put Hugh in my life and I thank him for that every single day. I can't immagine where I would be without him.
Monday, March 15, 2010
Happy Birthday Opa!
Today would have been my grandfathers birthday if he were still alive. I have yet to figure out if you age in heaven or not but just in case...Happy Birthday Opa. I remember when he died and later found we were going to have a little boy. There was nothing that made me second guess naming George after him. I was lucky to have taken care of him at the end of his life and got to know him on a much more personal level then anyone else did.
My grandfather was no saint by any means. He had a tough life and made some extremely poor choices. Once he had come to realize his indiscressions, he eventually found his faith. His belife in God was amazing and he was never afraid to die. I was always profoundly touched by that very fact. He had also been through so much and at the end of his life proved that no matter what you do in your life that we all have a chance to know God's love and forgiveness. I beleive that God used my boys to show him that very thing as we walked him that last road home that last month of his life. I was so lucky to have been able to know him like I did. George was named after a man who struggled through life and knew many hardships and overcame poor choices to at the end of his life know God in such an intimate way. I remember crying when I found out George was a boy but not because he was a boy but becuase my grandfather was not here to see the great grandchild that shared his name. THe irony is that now they are together much sooner then I ever thought they would be.
Today was an ok day. I did accomplish quite a bit so it was good in terms of productivity. All of the laundry got done except for the one load in the dryer right now. It has been a long time since I can say I was able to do that. While I was doing laundry I began to put things away in the laundry room. I happened to come across two pillows I had washed. One of them smelled like George and I don't know how in the world that was possible since he didn't really use it and it had been washed. It was so odd, I picked it up and then was taken back by the immediate trail of memories that flooded my mind. I debated if I should tell Hugh but I took the pillow up to him and he just held it and the two of us cried knowing how much we both missed him.
I finally finished addressing and labeling all the thank you notes from his service. That was a huge feat because it just takes so much emotionaly to be able to do that. We wound up sending a lot of cards because we could not remember who really sent what in terms of gifts and food. Those days just seem like a huge blur other then the really bad parts which we can reccolect every second of. Even looking back at the service, we noticed people we didn't even realize were there the day of. It is amazing how you can remember parts of it but others are just totally blank. I'm sure that everyone will understand and if we missed anyone they won't be upset about it because we appreciated everything everyone has done for us. We were so blessed to have so many people come to support us through it all.
The other thing I was able to accomplish was starting the process for the records request. I want to get copies of his records from the hospital. Every facility is different so I contacted them via email to find out their policy. I had to call the actual hospital and they are sending me a realease form. There are apparently 18 pages from that day. They charge you a dollar a piece for each page. It will be hard to get them in the mail but I know it is something I need to do. We are still waiting on a finalized autopsy report since it is still pending toxicology reports.
Our weekly phone call from the SIDS foundation did not happen today. I am kind of glad but then again they will probably know before we do about the finalized report. The very fact that they get that information before we do just makes me so mad. We didn't even ask for them to be involved and yet they can get the information and they don't evne know us. Hugh and I are greatful that they care and that there are people out there to support us like that but the whole process is very upsetting. We understand protocol and all of that but it is sad to think that you have to go through this and it is made worse by the time it takes and all of those who wind up being involved without your consent. You just feel very violated.
We will be greatful when this part of it is over.
I think this waiting just makes it all so much more difficult. Somehow you are left in limbo and can't really go forward until you have that finalization. We are all doing a little more each day dispite the huge effort it truly takes to be able to do just that. Our faith has not waivered but has rather gotten stronger dispite everything that has happened. Saying that doesn't mean that we aren't mad and upset at God for what he has chosen to do but I think that is part of it all. It is kind of like being mad at your parents for things they did that you didn't like as a kid. As an adult you can look back and realize why your parents did what they did but at the time it was happening you were just mad and upset with the entier situation.
I know that in time things will work out but right now it is as if it will last forever. years ago when Richard's dad went to prison, i thought that I would never get through that. My world had been turned upside down. Every time I would hear a car door slam, I would panic thinking it was the FBI. Now whenever there is a big commotion in the house I start a panic attack. I will be downstairs and Hugh will begin to walk with a heavy foot or run after the kids or raise his voice and panic just takes over. I know from my previoius experience that in time it will subside but for the time being it is just so overwhelming. I know God will not lead me to a place where there is not outlet or a place where he will not walk with me. When those really bad moments come and I am mad at him, I also find comfort in him. I hope to someday understand all of this but for now I hope to just get through the days as best as I can.
My grandfather was no saint by any means. He had a tough life and made some extremely poor choices. Once he had come to realize his indiscressions, he eventually found his faith. His belife in God was amazing and he was never afraid to die. I was always profoundly touched by that very fact. He had also been through so much and at the end of his life proved that no matter what you do in your life that we all have a chance to know God's love and forgiveness. I beleive that God used my boys to show him that very thing as we walked him that last road home that last month of his life. I was so lucky to have been able to know him like I did. George was named after a man who struggled through life and knew many hardships and overcame poor choices to at the end of his life know God in such an intimate way. I remember crying when I found out George was a boy but not because he was a boy but becuase my grandfather was not here to see the great grandchild that shared his name. THe irony is that now they are together much sooner then I ever thought they would be.
Today was an ok day. I did accomplish quite a bit so it was good in terms of productivity. All of the laundry got done except for the one load in the dryer right now. It has been a long time since I can say I was able to do that. While I was doing laundry I began to put things away in the laundry room. I happened to come across two pillows I had washed. One of them smelled like George and I don't know how in the world that was possible since he didn't really use it and it had been washed. It was so odd, I picked it up and then was taken back by the immediate trail of memories that flooded my mind. I debated if I should tell Hugh but I took the pillow up to him and he just held it and the two of us cried knowing how much we both missed him.
I finally finished addressing and labeling all the thank you notes from his service. That was a huge feat because it just takes so much emotionaly to be able to do that. We wound up sending a lot of cards because we could not remember who really sent what in terms of gifts and food. Those days just seem like a huge blur other then the really bad parts which we can reccolect every second of. Even looking back at the service, we noticed people we didn't even realize were there the day of. It is amazing how you can remember parts of it but others are just totally blank. I'm sure that everyone will understand and if we missed anyone they won't be upset about it because we appreciated everything everyone has done for us. We were so blessed to have so many people come to support us through it all.
The other thing I was able to accomplish was starting the process for the records request. I want to get copies of his records from the hospital. Every facility is different so I contacted them via email to find out their policy. I had to call the actual hospital and they are sending me a realease form. There are apparently 18 pages from that day. They charge you a dollar a piece for each page. It will be hard to get them in the mail but I know it is something I need to do. We are still waiting on a finalized autopsy report since it is still pending toxicology reports.
Our weekly phone call from the SIDS foundation did not happen today. I am kind of glad but then again they will probably know before we do about the finalized report. The very fact that they get that information before we do just makes me so mad. We didn't even ask for them to be involved and yet they can get the information and they don't evne know us. Hugh and I are greatful that they care and that there are people out there to support us like that but the whole process is very upsetting. We understand protocol and all of that but it is sad to think that you have to go through this and it is made worse by the time it takes and all of those who wind up being involved without your consent. You just feel very violated.
We will be greatful when this part of it is over.
I think this waiting just makes it all so much more difficult. Somehow you are left in limbo and can't really go forward until you have that finalization. We are all doing a little more each day dispite the huge effort it truly takes to be able to do just that. Our faith has not waivered but has rather gotten stronger dispite everything that has happened. Saying that doesn't mean that we aren't mad and upset at God for what he has chosen to do but I think that is part of it all. It is kind of like being mad at your parents for things they did that you didn't like as a kid. As an adult you can look back and realize why your parents did what they did but at the time it was happening you were just mad and upset with the entier situation.
I know that in time things will work out but right now it is as if it will last forever. years ago when Richard's dad went to prison, i thought that I would never get through that. My world had been turned upside down. Every time I would hear a car door slam, I would panic thinking it was the FBI. Now whenever there is a big commotion in the house I start a panic attack. I will be downstairs and Hugh will begin to walk with a heavy foot or run after the kids or raise his voice and panic just takes over. I know from my previoius experience that in time it will subside but for the time being it is just so overwhelming. I know God will not lead me to a place where there is not outlet or a place where he will not walk with me. When those really bad moments come and I am mad at him, I also find comfort in him. I hope to someday understand all of this but for now I hope to just get through the days as best as I can.
Sunday, March 14, 2010
Addicted
The past few days have just been very hard and I don't really know why. Today we went to visit Hugh's brother and his family. It was such an awsome day for all the kids and both Hugh and I. We both really needed the day out. On the way home the little boys fell asleep and I just started to cry. It made me think of how George never got to take that trip to Uncle Glenn and Aunt Ellen's house to play with the boys. He would have been sitting back there with his brothers sound asleep on the way home and suddenly our filled mini van just felt empty.
Many thoughts have rolled through my mind these past few days. The rain has always affected my mood and ironically George was the only one who could make me smile. Rainy days became our day to cuddle and laugh, something I had missed in my life until he came into. Somehow he showed me that the rain brought life. It took me until now to realize that is what he was for me and so many other people. The saddness of loosing him has changed so many and made people go from the mundaine day to day stuff to actually living. It is like that break of sun that comes through the clouds after it rains.
I have to say that I am not yet at the point where I am living. Ever ounce of who I am still mourns the loss of my little monkey. The smile on my face is plastered there hoping that keeping it there, will one day lead to it staying and me actually meaning it. All of this has lead me to think about grief and how in the worst way you want to just be through it and done with it all. The sadness that fills your heart you yearn to purge from your existence yet somehow you just can't do that. You want the pain to go away and would rather have been ran over by a truck then feel the pain of your heart being shattered into a million pieces as you scramble to try and figure out how to put that puzzle of a million pieces back together.
Tonight I realized that the whole grief process is sort of like that of an addict. If you have ever been addicted to anything you will understnad once I begin to explain. I am an addict to food and have been my whole life. It was not until I had a gastric bypass almost 11 years ago was I finally able to loose the weight. Many family members of mine have had addictions to alcohol and drugs. I was also on the flip side of the coin when I was the spouse of an addict. Fortunately, or unfortunately, it has given me a greater perspective on life in general.
Now how does that relate to the loss of my angel? I was addicted to my child. I was addicted to his smile, his laugh, his smell, and the very joy that he brought to me. Whenever I was feeling bad I could go in his room and pick him up and cuddle him. We would do lots of stuff but anything that made the kids happy because their happiness just brought us more happiness for we knew and understood the innocence of that joy and how very pure it was. Somehow children have a pure understnading of life and just see it in a different way then we do and teach us how to live life in their own way. No matter how sad or upset I was with life, George was the very thing that brought joy to my life.
Every day since he died it has been like quitting cold turkey. There was nothing to prepare us or help us through this horrible loss. Well, at least that is how it feels in our minds at times. The loss of a child is something that is difficult to exlain to others so you feel very alienated a good portion of the time. Any addict will tell you, they too feel that way. Many times I would feel that way as I watched thin girls who were not very nice get the guys in school and they could eat whatever they wanted and never struggled like I did.
I remeber being overweight and sneeking to the bathroom to eat so no one would know I was doing it. When I put on a happy face and then go to my room to cry, that is how I feel when trying to cope with the loss of my little boys beautiful smile. On the outside you look fine to everyone else and put on that front so no one will know that you are dying inside. Every part of you wants to do better but you just feel as if you can't but there is no way you will let anyone know that inside you are truly week.
There are the moments of denial. I cant tell you how many times I have gotten up to think about how I was going to do something with George. Suddenly, I am hit with the hard reality that it was just my hopefullness that he was still here or the fact I just forgot for that moment. I still look at his picture and wonder was he real? His urn sits on my fireplace and has his name and date of birth and death on it and rationally I know the remains of his body are there but in my mind it is as if the hell I am living is not real. I can't tell you for how many years I went on knowing in my mind I really had a problem with food but would not every truly come to terms with the problem I had.
Right now the biggest problem is the problem I am having with handling the moments I am overwhelmed. I can be doing great for a long time but it will take one single thing to trigger that feeling. In some ways I look at eveyrthing and it reminds me of him. It is sort of like when you are trying to kick that addiction. You keep coming back and doing it all over again. For me I replay his death in my mind over and over again, which sends me on a spiaral of emotions or I think of the things he isn't here to do with us. Now every part of me knows I cannot change what has happened but I keep finding myself back to square one.
For the years I struggled with my weight and even now years later, I find myself still having trouble fitting my addicion. It gets hard and you want to do what you are comfortable with rather then what is hard. I would go through periods of weight loss but eventually would revert to my old ways. If I fell down, I would feel guilty and then be so upset with myself that it just gave me more of a reason to eat again. I had already failed once what makes the difference. I guess in comparison it is like the times I feel like I should be happy and just can't feel happy and all the guilt that comes with it all.
The spouse of the addict has their own set of emotions. They have the moments of understanding and then others of pure anger and rage inside. They just want the life they knew back again yet know they will never have it. You tear yourself appart inside just trying to cope. You accept things in small incriments so that the chaos your life has become just doesn't even seem familiar and the place you had started seemes so far away. If and when the person you love does go away, that very day is the hardest day of your life and then, even once the person is home, you are still left to learn to live that new "normal". Yes it can be for the good but at the time it is hapening, it dosn't feel that way and is so hard to do. If kids are involved you feel responsible for them and put their needs before your own and can even find yourself lost in their needs. This is kind of like what happens when you loose your child and the feelings that you have towards God and yourself.
My addiction happenes to be some of the hardest to give up. Food you need to actually survive so you cannot just stop becaus it will kill you. Other things you don't "Need" to live. My love for my son was just like my food addiction, something you can't live without. I have to find a way to balance that love so that I can live again. It is so hard to do that but in the end I know God will help me through this as he has with everything else in my life. Right now it feels as if I will never be able to find a way to make that happen but I have been down this road many times in many ways so I know I am able to do it with God's help. Every night I pray for strength to go on and to find peace in everything. I've had sheer moments of peace so I know that it is just a matter of time where I will be able to walk along side God rather then having him carry me. Yet I also know that right now that is what he needs to do. THat is like the time you finally realize you have a problem and need to seek the help of others and put your faith in the fact you know you can do it but it is going to take time.
God has a greater plan, I am sure of that. I am just in need of his guidance as he helps me to overcome my addicion. I thought that my addiction to food was bad, but I know the addiction to the love my son showed me is much greater. It is going to be an on going life long addiction and that is why it is so hard.
Many thoughts have rolled through my mind these past few days. The rain has always affected my mood and ironically George was the only one who could make me smile. Rainy days became our day to cuddle and laugh, something I had missed in my life until he came into. Somehow he showed me that the rain brought life. It took me until now to realize that is what he was for me and so many other people. The saddness of loosing him has changed so many and made people go from the mundaine day to day stuff to actually living. It is like that break of sun that comes through the clouds after it rains.
I have to say that I am not yet at the point where I am living. Ever ounce of who I am still mourns the loss of my little monkey. The smile on my face is plastered there hoping that keeping it there, will one day lead to it staying and me actually meaning it. All of this has lead me to think about grief and how in the worst way you want to just be through it and done with it all. The sadness that fills your heart you yearn to purge from your existence yet somehow you just can't do that. You want the pain to go away and would rather have been ran over by a truck then feel the pain of your heart being shattered into a million pieces as you scramble to try and figure out how to put that puzzle of a million pieces back together.
Tonight I realized that the whole grief process is sort of like that of an addict. If you have ever been addicted to anything you will understnad once I begin to explain. I am an addict to food and have been my whole life. It was not until I had a gastric bypass almost 11 years ago was I finally able to loose the weight. Many family members of mine have had addictions to alcohol and drugs. I was also on the flip side of the coin when I was the spouse of an addict. Fortunately, or unfortunately, it has given me a greater perspective on life in general.
Now how does that relate to the loss of my angel? I was addicted to my child. I was addicted to his smile, his laugh, his smell, and the very joy that he brought to me. Whenever I was feeling bad I could go in his room and pick him up and cuddle him. We would do lots of stuff but anything that made the kids happy because their happiness just brought us more happiness for we knew and understood the innocence of that joy and how very pure it was. Somehow children have a pure understnading of life and just see it in a different way then we do and teach us how to live life in their own way. No matter how sad or upset I was with life, George was the very thing that brought joy to my life.
Every day since he died it has been like quitting cold turkey. There was nothing to prepare us or help us through this horrible loss. Well, at least that is how it feels in our minds at times. The loss of a child is something that is difficult to exlain to others so you feel very alienated a good portion of the time. Any addict will tell you, they too feel that way. Many times I would feel that way as I watched thin girls who were not very nice get the guys in school and they could eat whatever they wanted and never struggled like I did.
I remeber being overweight and sneeking to the bathroom to eat so no one would know I was doing it. When I put on a happy face and then go to my room to cry, that is how I feel when trying to cope with the loss of my little boys beautiful smile. On the outside you look fine to everyone else and put on that front so no one will know that you are dying inside. Every part of you wants to do better but you just feel as if you can't but there is no way you will let anyone know that inside you are truly week.
There are the moments of denial. I cant tell you how many times I have gotten up to think about how I was going to do something with George. Suddenly, I am hit with the hard reality that it was just my hopefullness that he was still here or the fact I just forgot for that moment. I still look at his picture and wonder was he real? His urn sits on my fireplace and has his name and date of birth and death on it and rationally I know the remains of his body are there but in my mind it is as if the hell I am living is not real. I can't tell you for how many years I went on knowing in my mind I really had a problem with food but would not every truly come to terms with the problem I had.
Right now the biggest problem is the problem I am having with handling the moments I am overwhelmed. I can be doing great for a long time but it will take one single thing to trigger that feeling. In some ways I look at eveyrthing and it reminds me of him. It is sort of like when you are trying to kick that addiction. You keep coming back and doing it all over again. For me I replay his death in my mind over and over again, which sends me on a spiaral of emotions or I think of the things he isn't here to do with us. Now every part of me knows I cannot change what has happened but I keep finding myself back to square one.
For the years I struggled with my weight and even now years later, I find myself still having trouble fitting my addicion. It gets hard and you want to do what you are comfortable with rather then what is hard. I would go through periods of weight loss but eventually would revert to my old ways. If I fell down, I would feel guilty and then be so upset with myself that it just gave me more of a reason to eat again. I had already failed once what makes the difference. I guess in comparison it is like the times I feel like I should be happy and just can't feel happy and all the guilt that comes with it all.
The spouse of the addict has their own set of emotions. They have the moments of understanding and then others of pure anger and rage inside. They just want the life they knew back again yet know they will never have it. You tear yourself appart inside just trying to cope. You accept things in small incriments so that the chaos your life has become just doesn't even seem familiar and the place you had started seemes so far away. If and when the person you love does go away, that very day is the hardest day of your life and then, even once the person is home, you are still left to learn to live that new "normal". Yes it can be for the good but at the time it is hapening, it dosn't feel that way and is so hard to do. If kids are involved you feel responsible for them and put their needs before your own and can even find yourself lost in their needs. This is kind of like what happens when you loose your child and the feelings that you have towards God and yourself.
My addiction happenes to be some of the hardest to give up. Food you need to actually survive so you cannot just stop becaus it will kill you. Other things you don't "Need" to live. My love for my son was just like my food addiction, something you can't live without. I have to find a way to balance that love so that I can live again. It is so hard to do that but in the end I know God will help me through this as he has with everything else in my life. Right now it feels as if I will never be able to find a way to make that happen but I have been down this road many times in many ways so I know I am able to do it with God's help. Every night I pray for strength to go on and to find peace in everything. I've had sheer moments of peace so I know that it is just a matter of time where I will be able to walk along side God rather then having him carry me. Yet I also know that right now that is what he needs to do. THat is like the time you finally realize you have a problem and need to seek the help of others and put your faith in the fact you know you can do it but it is going to take time.
God has a greater plan, I am sure of that. I am just in need of his guidance as he helps me to overcome my addicion. I thought that my addiction to food was bad, but I know the addiction to the love my son showed me is much greater. It is going to be an on going life long addiction and that is why it is so hard.
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Me With My Prince Charming In Front of the Castle
