Tuesday, April 30, 2013
Finally!!!
It has been quite a while since I have posted because google would not let me sign in without tons of drama. Today I have not been able to sleep so I'm heading into another sleepless night! I realized that I miss writing here and having this outlet so this was the perfect time to figure it all out. I did it!!! Finally!!!
So much has changed in our lives and I'd like to share with those who are still following our story the most recent news.
We successfully donated 100 bags for George's stocking project to the homeless in Camden, NJ. It was a moving experience and this year it truly touched Richard's friend Tony who has now become like family. Both Rich and Tony helped us along with those who did make donations! It is so hard not to have George during the holidays and this project helps to keep him touching lives and living on through these projects and people. They truly appreciated it and we have some leftovers for this year's project.
Michael was granted his wish through the Make a Wish Foundation. We were blessed to spend a week aboard the Disney Fantasy! It was such a blessing for our family and definitely a life changing experience. Our trip took us to Mexico and opened the eyes of our children, especially Richard. All the kids were able to find themselves on this trip and really have some TLC just like Hugh and I did. It was our first real family vacation since we NEVER go alone. All of us were challenged not having other family but we kind of learned how to be a little family rather than the larger family we have come to depend on and love. Our family did make this possible since we did have to cover part of the cost of the trip and were not aware of that. One thing we knew was they wouldn't let us down and we would surely be able to make this happen for Michael. Michael LOVED being the center of attention and the "special" child for the week.
We are now in the process of moving back to our house!!! Yes you read that right, we are going home:o) In a twist of events, a family member purchased our house and is allowing us to live with them until we are able to purchase it back hopefully again some day. There is a lot that goes into this but God is good and we are headed back to the place the boys all know as home...it is going to be interesting to see Gabby since she only knows my parents house as home. She is a smart cookie and I know she will be ok with it all. None of this would have been possible without our families and we thank all of you who were involved with us being able to live in our home again.
All of us have been doing ok medically. I have yet again shown positive for the Mitochondrial Defect with significant numbers and also produce a substantial amount of Mitochondria. We have been working with Dr. Michael Goldenthal at St. Christopher's Hospital in PA. Unfortunately, he has lost money towards funding the swabs and now has to charge us 200 dollars per swab. This past time Michael and I were done since we need the black and white paper dx and owe him 400 dollars. Long story involved with that too. We will figure it out once we get this move done.There is so much that goes into the move that other things have to be put on hold if possible. All of this is making the days go by so fast. I really want to work on a fundraiser to help with this diagnosis process since we really need answers and if the doc could find our genetic defect, he would be able to see if we all have it and if George had it for sure. I'm not sure how long it is going to take before this happens but all of it comes down to money and it kills me. PLEASE, if you have a way to give towards his research please let me know, we can get anything given allocated towards his research.
We were also able to return to Florida for a trip to Disney with our large family. My niece who is Gabby's age was fortunate to join us and the girls had so much fun...it is amazing to live through their eyes! That is what life is all about. All of us had a great time...it was a challenge at first since it was the same house we went to that George went to with us when he was alive. God do I miss that little monkey face!!!
Emotionally, I have good and bad days. I stood in the rain at his grave yesterday with my hand in the dirt where he is buried. I don't know why I needed to do it but I did. I probably would have laid there on his grave if it was only his space or it was a place that allowed that but since it is at our church that just isn't possible. I did sit for the first time on the ground where he was buried to take a picture of myself with his things and grave that I got him for Easter. Inside I don't understand all of these needs but something just gives me this internal pull that cannot be denyed. Why do I share this? I share this for others who think they are crazy or alone when they do things like this. I know I feel so alone.
Hugh has been his normal self and really working as hard as he can to keep our family going. He recently hurt his back again and was out on disability for a while. Right now he is still working at Sears but keeping his eyes open for a better option that can support our family better but Sears is safe and there for now. I just worry about Sears itself tanking and Hugh being without work. I am still working on my disability paperwork and am on my first appeal but I need that paper saying I have Mito which is gonna cost 400 dollars. We just keep telling ourselves that God sees the bigger picture or we would be so lost!!!
We are really trying to keep our faith. There are days when it is all so very hard to do and the pain of this world seems to be overwhelming. It forever seems like we are needing help and we have yet to understand any of it. Life for us all has been so tough and people get sick of hearing about it all. Our family will forever be in need of help and it gets old to people after a while so we always feel like we are juggling things all the time. Please keep us all in your prayers. We thank you for coming back and keeping an eye to see if we reposted. I am planning to start writing again if all things go well.
So much has changed in our lives and I'd like to share with those who are still following our story the most recent news.
We successfully donated 100 bags for George's stocking project to the homeless in Camden, NJ. It was a moving experience and this year it truly touched Richard's friend Tony who has now become like family. Both Rich and Tony helped us along with those who did make donations! It is so hard not to have George during the holidays and this project helps to keep him touching lives and living on through these projects and people. They truly appreciated it and we have some leftovers for this year's project.
Michael was granted his wish through the Make a Wish Foundation. We were blessed to spend a week aboard the Disney Fantasy! It was such a blessing for our family and definitely a life changing experience. Our trip took us to Mexico and opened the eyes of our children, especially Richard. All the kids were able to find themselves on this trip and really have some TLC just like Hugh and I did. It was our first real family vacation since we NEVER go alone. All of us were challenged not having other family but we kind of learned how to be a little family rather than the larger family we have come to depend on and love. Our family did make this possible since we did have to cover part of the cost of the trip and were not aware of that. One thing we knew was they wouldn't let us down and we would surely be able to make this happen for Michael. Michael LOVED being the center of attention and the "special" child for the week.
We are now in the process of moving back to our house!!! Yes you read that right, we are going home:o) In a twist of events, a family member purchased our house and is allowing us to live with them until we are able to purchase it back hopefully again some day. There is a lot that goes into this but God is good and we are headed back to the place the boys all know as home...it is going to be interesting to see Gabby since she only knows my parents house as home. She is a smart cookie and I know she will be ok with it all. None of this would have been possible without our families and we thank all of you who were involved with us being able to live in our home again.
All of us have been doing ok medically. I have yet again shown positive for the Mitochondrial Defect with significant numbers and also produce a substantial amount of Mitochondria. We have been working with Dr. Michael Goldenthal at St. Christopher's Hospital in PA. Unfortunately, he has lost money towards funding the swabs and now has to charge us 200 dollars per swab. This past time Michael and I were done since we need the black and white paper dx and owe him 400 dollars. Long story involved with that too. We will figure it out once we get this move done.There is so much that goes into the move that other things have to be put on hold if possible. All of this is making the days go by so fast. I really want to work on a fundraiser to help with this diagnosis process since we really need answers and if the doc could find our genetic defect, he would be able to see if we all have it and if George had it for sure. I'm not sure how long it is going to take before this happens but all of it comes down to money and it kills me. PLEASE, if you have a way to give towards his research please let me know, we can get anything given allocated towards his research.
We were also able to return to Florida for a trip to Disney with our large family. My niece who is Gabby's age was fortunate to join us and the girls had so much fun...it is amazing to live through their eyes! That is what life is all about. All of us had a great time...it was a challenge at first since it was the same house we went to that George went to with us when he was alive. God do I miss that little monkey face!!!
Emotionally, I have good and bad days. I stood in the rain at his grave yesterday with my hand in the dirt where he is buried. I don't know why I needed to do it but I did. I probably would have laid there on his grave if it was only his space or it was a place that allowed that but since it is at our church that just isn't possible. I did sit for the first time on the ground where he was buried to take a picture of myself with his things and grave that I got him for Easter. Inside I don't understand all of these needs but something just gives me this internal pull that cannot be denyed. Why do I share this? I share this for others who think they are crazy or alone when they do things like this. I know I feel so alone.
Hugh has been his normal self and really working as hard as he can to keep our family going. He recently hurt his back again and was out on disability for a while. Right now he is still working at Sears but keeping his eyes open for a better option that can support our family better but Sears is safe and there for now. I just worry about Sears itself tanking and Hugh being without work. I am still working on my disability paperwork and am on my first appeal but I need that paper saying I have Mito which is gonna cost 400 dollars. We just keep telling ourselves that God sees the bigger picture or we would be so lost!!!
We are really trying to keep our faith. There are days when it is all so very hard to do and the pain of this world seems to be overwhelming. It forever seems like we are needing help and we have yet to understand any of it. Life for us all has been so tough and people get sick of hearing about it all. Our family will forever be in need of help and it gets old to people after a while so we always feel like we are juggling things all the time. Please keep us all in your prayers. We thank you for coming back and keeping an eye to see if we reposted. I am planning to start writing again if all things go well.
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Me With My Prince Charming In Front of the Castle
