Yesterday and the days leading up to it, I was having a rough time. After a diagnosis of a life threatening disease and ridicule from a family member who just doesn't understand any of it, I had such a heavy heart. The holidays are coming and of course that brings a whole other side to all of this with us having to live with George in heaven and still be financially struggling. Yes we get help for the holidays but there is nothing like being able to shop for your own children and see their faces when they open something you got them and they just love it.
I've been realistic about it all and have been looking for bargains for the kids on Amazon and Ebay. Even if the toys are used they are still new to them. Every paycheck Hugh gets, I have been taking a small portion to get a few things for the kids. This paycheck was used for the younger boys. Included in that, I feel George is one of them. It is so hard to try and find ways to still include him in our holidays but I am determined to make this a good holiday season no matter how hard that may be. I've been looking for some small items for George to put on his mantle throughout the year. Most family does not even buy anything for him since he died so I often feel it is my job as his mommy to do this for him. His big brother's also don't understand why he doesn't get gifts even though he is in heaven.
Last year we had people send ornaments and put them under his tree. A few people did this for us and we will be sure to put them on his tree again this year. One thing that he never had was a stocking. I figured he had more time with us so I never got him one. My depression last year and Gabrielle's birth just made it completely slip my mind. This year I was determined to get him a stocking. I went on ebay and started to look and see what I could get a deal on. Much to my surprise there was one beautiful Curious George stocking for sale. There were quite a few bids on it but I really wanted it for him so I placed my bid and watched for the next 45 mins until the sale ended to be able to get this stocking for him.
I won the bid and paid for it immediately. The person selling it happened to email me telling me that he was shipping it as soon as possible. I thanked him from the bottom of my heart and said how excited I was to get it because it was actually very special. It was a quick email that I sent him just letting him know how much it meant to us and that it was for a special little boy. I woke up this morning to go in my email to find that the money for the stocking had been refunded. My heart sank as I thought something happened and I could not get it for my little monkey. After taking a deep breath I opened the email to find that the gentleman was going to give it to us at no cost!
I sat there staring at the email in tears, he had taken the time to go to George's page and watched the video. At first I didn't know how he knew about the web page but then I remembered I have an automatic signature set on my email that has the web page listed. This man felt compelled to give this to us as a gift and he truly has no idea how big a gift it was...something so simple as a Christmas stocking. I thought about the past week and all the struggles I had gone through and somehow they were all wiped away with one simple gesture from a stranger. This man changed my whole week and didn't even know it.
He also taught me that it isn't always how many gifts your kids have. With us loosing the house and all that has transpired to this point in life we have all had our struggle with the emotions that come with it. Sometimes we wallowed in our own pity rather than being grateful for what we do have. I did this myself more recently and kept praying to get out of this funk. I finally found peace in George's death and then today learned a life lesson in a simple gift of a Christmas stocking! It made me realize that as long as a gift is given from the heart, that is all that matters. It isn't about the money spent or amount given but rather the thought and time that went into giving it. I think I have always known this and it is probably the reason I hate gift cards. We, as a society have gotten to wrapped up in feeling obligated to get a gift for someone and have completely gone away from the purpose of it all. A gift is to be given with thought and love behind it, not just a piece of plastic picked up to just fulfill a gift for a name on a list.
This simple gesture has actually made me think of something that I want to do. I know we are collecting coats for the homeless along with other items to keep them warm. These people are grateful for such a basic staple that many people take for granted, they don't even think further than that to ask for something for themselves. I think I am going to see if I can gather some material and make stockings to send down with the clothes we by and fill each one with a few things. I'm going to try and get the things through free cycle or from other friends/family that would be interested in helping. If you think this is something you might be interested in helping with, please let me know...I think this may be exactly what we needed to get us out of our funk and yet still honor our little boy's memory in such a way that our lives were touched! Be a kind stranger to someone else today, you never really know what that could mean to another person!
Saturday, November 5, 2011
Friday, November 4, 2011
Thursday, November 3, 2011
Newly Diagnosed
As I posted, I am now officially diagnosed with Mitochondrial Disease just like Joshua and Michael. Hugh is borderline for complex IV but we have surely given the researcher a lot to think of and do with our family. He has asked me to keep in touch and work with him in a few more weeks by coming in to be swabbed again so he can continue to follow me regularly since I was so deficient and have a very high enzyme that is produced when your body creates excessive amounts of Mitochondria. I am deficient in the Complex I chain of the energy process. Hugh is slightly deficient in Complex IV.
Joshua has gotten better compared to where he was during the first test and although he is close to bottom of the range, he now comes in within the normal range. Michael is still the same and is deficient in complex I and IV. Richard and Gabrielle are both fine, showing no signs of deficiency and for that I am so grateful. When talking to the doc about what had transpired with George, he does believe that he more than likely had the disorder too but we will never know for sure even though in my heart I know he was a sick little boy. he had so many symptoms but he looked so "normal" that doctors just never took me serious and by the time they started to, it was too late, he was dead.
Being diagnosed kind of hit me harder than I thought it was going to. It was just like learning of Joshua having this for the first time and getting the black and white paper saying so even though I knew in my heart he had it before the report came in. Having the diagnosis explains quite a bit for me and all the symptoms that I had as a child growing up. Unfortunately, when I was growing up they didn't even know what it was so I never would have even been diagnosed properly. I was a "colic" baby that just cried all the time, weight was a huge struggle for me no matter how much or little I ate, fatigue was so excessive for me especially in high school and college, and there were many other symptoms. Doctors wrote all of my symptoms with some other reason even though there was nothing that really pointed to those.
Life for me has never been easy on any front. I watched as others who were self centered and fortunate to not have "life happen" to them, not have to struggle and yet find it ok to judge me thinking I caused my own issues. These sort of judgements are so hard to handle on top of the obstacles that have come my way. The other day one of my uncles who I thought understood or cared showed his true thoughts about me and I was so hurt. He said how my sisters were better than I was and would survive if my mother died and I wouldn't. Well, first of all, none of my sisters have had to deal with the obstacles I have and these obstacles have proven time and again that I can survive. I was so hurt and could not keep back the tears that filled my heart with sadness from hearing this judgement come from his mouth. Today it still bothers me. My mom has told me to ignore it but it is a lot easier said than done.
I don't understand why people find it so easy to judge others and use words to hurt people rather than raise them up. They don't understand that if you point a finger you have three pointing back at you. Let your husband be arrested by the FBI(without your knowledge), your children be living with a life threatening illness with doctors who know nothing about it, you loose your job by no fault of your own in an economy that is in the toilet, and watch your child die before your eyes and see how well you fare. Life has not been kind to us and yet we are still living and caring for our children in the capacity we do. We still give when we can and do fundraisers and things to help others in need and in worse shape than we are. If I was such a bad person and a leach I wouldn't do anything to give back and would wallow in my own sorrow but instead each day I push forward and work hard to still make a positive difference in this world. Even though I know deep in my heart I am a good person but that doesn't mean it doesn't hurt when someone says something so hurtful.
The closer we come to loosing the house, it becomes more emotional and difficult for me. This hurts and adds pain to an already aching and fractured heart. Every time I seem to find that we are moving forward something happens and we are back to square one. We watch others around us flourish and receive things even if they are not good people and that is so hard to sit back and watch. Why is it that for some people life is just so difficult? I love it when people say that God doesn't give you more than you can handle but I am just sick of it...give it to someone else. We are so overwhelmed and have watched our lives fall apart before our eyes and try to get back on our feet, only to be knocked down again by another obstacle or a person who doesn't even understand all we have been through. It hurts no matter what anyone says and I think often times they say it doesn't matter because they know it hurts but don't want you to be upset.
Often times like these, I miss my grandmother. The two of us had such a special relationship and she never told me to just deal with it or ignore it. She would listen and empathize with me and in the end would just say she would pray for me. If anyone knew about hard times, I know it was my grandmother. She survived WWII, was an alcoholic, had 10 kids, and her own set of medical issues. My grandparents lost their house and in general did not have an easy life. She also would talk to my mom and often times get her to see things in a different manner or just be the listening ear for my mom without judging me if we had an issue between the two of us. Now if my mom says something to someone else it has to be a sibling and not very many of them even like me for that matter.
I was the one who was close to my mom and they all treated me as the outcast from such a young age thinking I mooched off my mom and not every really knowing the truth about anything. It always hurt and I came to hate family functions and things like that because I always felt as if they were talking about me or judging me and I could just feel what they thought of me in their body language and it has always hurt. When George died I felt like the only reason that most of them were there was for my mom and so they didn't feel guilty. I could be wrong but I don't think I am. If I were to die it wouldn't matter to many of them and they would probably feel that at least I was no longer a burden to my parents. My immediate family would be impacted but other than that a good chunk of the rest of them could care less.
With this new diagnosis, I have a lot of emotions running around in my body and really need to get a handle on it all. I know how bad I feel inside even though I often times don't show it on the outside to anyone. They really have no clue and never have. Somehow if you tell people you aren't feeling well, or at least in my family, they have to one up you so you learn real quick to just suck it up and not bother saying anything. They have all done it and with a hand tied behind their back or have to make some other smart ass comment that I just don't have patience for a good chunk of the time. I've perfected putting on that smiling face and dying inside even before George died so it is engrained in who I am now. There are a lot of things I worry about for myself medically and emotionally, especially with all I know about the disease. I ask that you keep me in your prayers right now as I wrap my head around all that is going on and this new diagnosis, it helps to know I am not the only one praying...thank you all in advance!
Joshua has gotten better compared to where he was during the first test and although he is close to bottom of the range, he now comes in within the normal range. Michael is still the same and is deficient in complex I and IV. Richard and Gabrielle are both fine, showing no signs of deficiency and for that I am so grateful. When talking to the doc about what had transpired with George, he does believe that he more than likely had the disorder too but we will never know for sure even though in my heart I know he was a sick little boy. he had so many symptoms but he looked so "normal" that doctors just never took me serious and by the time they started to, it was too late, he was dead.
Being diagnosed kind of hit me harder than I thought it was going to. It was just like learning of Joshua having this for the first time and getting the black and white paper saying so even though I knew in my heart he had it before the report came in. Having the diagnosis explains quite a bit for me and all the symptoms that I had as a child growing up. Unfortunately, when I was growing up they didn't even know what it was so I never would have even been diagnosed properly. I was a "colic" baby that just cried all the time, weight was a huge struggle for me no matter how much or little I ate, fatigue was so excessive for me especially in high school and college, and there were many other symptoms. Doctors wrote all of my symptoms with some other reason even though there was nothing that really pointed to those.
Life for me has never been easy on any front. I watched as others who were self centered and fortunate to not have "life happen" to them, not have to struggle and yet find it ok to judge me thinking I caused my own issues. These sort of judgements are so hard to handle on top of the obstacles that have come my way. The other day one of my uncles who I thought understood or cared showed his true thoughts about me and I was so hurt. He said how my sisters were better than I was and would survive if my mother died and I wouldn't. Well, first of all, none of my sisters have had to deal with the obstacles I have and these obstacles have proven time and again that I can survive. I was so hurt and could not keep back the tears that filled my heart with sadness from hearing this judgement come from his mouth. Today it still bothers me. My mom has told me to ignore it but it is a lot easier said than done.
I don't understand why people find it so easy to judge others and use words to hurt people rather than raise them up. They don't understand that if you point a finger you have three pointing back at you. Let your husband be arrested by the FBI(without your knowledge), your children be living with a life threatening illness with doctors who know nothing about it, you loose your job by no fault of your own in an economy that is in the toilet, and watch your child die before your eyes and see how well you fare. Life has not been kind to us and yet we are still living and caring for our children in the capacity we do. We still give when we can and do fundraisers and things to help others in need and in worse shape than we are. If I was such a bad person and a leach I wouldn't do anything to give back and would wallow in my own sorrow but instead each day I push forward and work hard to still make a positive difference in this world. Even though I know deep in my heart I am a good person but that doesn't mean it doesn't hurt when someone says something so hurtful.
The closer we come to loosing the house, it becomes more emotional and difficult for me. This hurts and adds pain to an already aching and fractured heart. Every time I seem to find that we are moving forward something happens and we are back to square one. We watch others around us flourish and receive things even if they are not good people and that is so hard to sit back and watch. Why is it that for some people life is just so difficult? I love it when people say that God doesn't give you more than you can handle but I am just sick of it...give it to someone else. We are so overwhelmed and have watched our lives fall apart before our eyes and try to get back on our feet, only to be knocked down again by another obstacle or a person who doesn't even understand all we have been through. It hurts no matter what anyone says and I think often times they say it doesn't matter because they know it hurts but don't want you to be upset.
Often times like these, I miss my grandmother. The two of us had such a special relationship and she never told me to just deal with it or ignore it. She would listen and empathize with me and in the end would just say she would pray for me. If anyone knew about hard times, I know it was my grandmother. She survived WWII, was an alcoholic, had 10 kids, and her own set of medical issues. My grandparents lost their house and in general did not have an easy life. She also would talk to my mom and often times get her to see things in a different manner or just be the listening ear for my mom without judging me if we had an issue between the two of us. Now if my mom says something to someone else it has to be a sibling and not very many of them even like me for that matter.
I was the one who was close to my mom and they all treated me as the outcast from such a young age thinking I mooched off my mom and not every really knowing the truth about anything. It always hurt and I came to hate family functions and things like that because I always felt as if they were talking about me or judging me and I could just feel what they thought of me in their body language and it has always hurt. When George died I felt like the only reason that most of them were there was for my mom and so they didn't feel guilty. I could be wrong but I don't think I am. If I were to die it wouldn't matter to many of them and they would probably feel that at least I was no longer a burden to my parents. My immediate family would be impacted but other than that a good chunk of the rest of them could care less.
With this new diagnosis, I have a lot of emotions running around in my body and really need to get a handle on it all. I know how bad I feel inside even though I often times don't show it on the outside to anyone. They really have no clue and never have. Somehow if you tell people you aren't feeling well, or at least in my family, they have to one up you so you learn real quick to just suck it up and not bother saying anything. They have all done it and with a hand tied behind their back or have to make some other smart ass comment that I just don't have patience for a good chunk of the time. I've perfected putting on that smiling face and dying inside even before George died so it is engrained in who I am now. There are a lot of things I worry about for myself medically and emotionally, especially with all I know about the disease. I ask that you keep me in your prayers right now as I wrap my head around all that is going on and this new diagnosis, it helps to know I am not the only one praying...thank you all in advance!
Wednesday, November 2, 2011
New Mito Diagnosis...good and bad
Today the researcher handling Mito diagnosis called with the results from our whole family mouth swabs...this is what came of it and where we all stand.
Hugh- Slight complex IV deficiency
Me-Severe Complex I deficiency along with elevated enzyme that creates Mito production...the most affected in the family.
Richard-not affected
Joshua-no longer showing deficiency and following in the "low" of "normal" range...he was on the mito cocktail when tested.
Michael-same as last time, still deficient in Complex I and IV
Gabrielle- Not affected
I'm still trying to wrap my head around all of this, I will post more later once I have had time to figure out where we are going with all of this info. It is nice to know I am not crazy but not so fun to know you have a disease that you can't get treated locally for and insurance doesn't cover the specialists in the field. I'm praying to be able to wrap my head around this and find out where I am suppose to be with all of this. I was not surprised to find out I had it but was quite shocked to hear I was the worst where defects are concerned. It really does explain a good chunk of my life and all the problems I have had along with the exhaustion on a regular basis. Please keep me in your prayers as I learn to accept this new diagnosis.
Hugh- Slight complex IV deficiency
Me-Severe Complex I deficiency along with elevated enzyme that creates Mito production...the most affected in the family.
Richard-not affected
Joshua-no longer showing deficiency and following in the "low" of "normal" range...he was on the mito cocktail when tested.
Michael-same as last time, still deficient in Complex I and IV
Gabrielle- Not affected
I'm still trying to wrap my head around all of this, I will post more later once I have had time to figure out where we are going with all of this info. It is nice to know I am not crazy but not so fun to know you have a disease that you can't get treated locally for and insurance doesn't cover the specialists in the field. I'm praying to be able to wrap my head around this and find out where I am suppose to be with all of this. I was not surprised to find out I had it but was quite shocked to hear I was the worst where defects are concerned. It really does explain a good chunk of my life and all the problems I have had along with the exhaustion on a regular basis. Please keep me in your prayers as I learn to accept this new diagnosis.
Tuesday, November 1, 2011
Sunday, October 30, 2011
Happy Anniversary
Today, 7 years ago, Hugh and I got married. I thank God for him every single day of my life because I don't know where I would be without him. Every day we defy all odds and statistics that say we should be divorced. Instead, we are going stronger than ever even though we had our rough moments from time to time. We have the sort of love that many dream of and I did as a child. I never anticipated all that I have been through to happen to me but knowing I have someone to walk this path with in life is more comforting than anything and makes it all a little easier. We have been through more than most people have been through in 7 years than most go through in a lifetime! God has truly blessed us time and time again and cared for us and given us all that we "need", even in the bad times. I pray for many more years together with many more blessings!
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Me With My Prince Charming In Front of the Castle
