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!
George's Guardian's of Grace Projects
Stocking project is now in full force collecting donations. We have a list of the items we can use. You can also choose to sponsor a stocking in memory or honor of someone else. We will include a paragraph or two in the cards we place in the stockings to let the recipient know about the person that means so much to you. Our paypal account is posted on this page and ready to take donations. Email us for a list of items needed or with any questions or information you would like included on a sponsored stocking/donation.
Video Tributes/Celebration of Life Footage
Here is a link to a video tribute that was made by Richard's dad in memory of George. Get out your tissues!
We Finally have footage from the service up and running:
It is in 4 sections running about 17 mins each. If you were unable to attend, you can now see what you missed. We were so blessed to have everyone there with us in person and in spirit!