we are all human..

We went to Disney for a couple days and it WAS magical. I honestly felt like everything was ok in our world for a couple days and maybe this god awful disease didnt exist. The third day or so Owen's body said enough and he was exhausted physically and mentally. Scarlett was in heaven loved everything from the princesses to the pirates. The real world came back when we got home and Owen had xrays, ekg,bloodwork etc...He has developed scoliosis from weak muscles.We will have to monitor him every 6 months as the curve can progress. He had an abnormal ekg that they are going to repeat in a couple weeks. Owen's legs need some support when they are tired and he was fit for superman braces for his legs. Thanks alot you terrible, miserable god awful energy draining disease. I know things could be ALOT worse but I am only human and he is my son. I remind myself daily how lucky we are but there are days when I am angry. All of this testing does not end when you walk out the door, we live it daily with Owen's anxiety and fear. He now wonders why, why do I go to the doctor all the time? Yeah, dont worry I play the strong roll,"well Owen this is what we have to do". I believe god chose me to be Owen's mother for a reason. I understand him from his soul outward.My mom was over last night and for the first time I realized she understands me that way. There is nobody else, I love you mom. People change on the outside as they get older and maybe sickness sets in but the bond between mother and child never changes. We are all human,remember that somebody else's struggle may be on the inside...

birthday wishes...

Here it goes another year older and definitely have gotten wiser. Owen has been thru alot lately we went to Cincinnati Children's Hospital for a week. He was poked, scoped, etc..It was a great appointent as they are looking more into the root of all the issues. He is severely deficient in his fat soluble vitamins and they are checking for malabsorbtion. The other thing we are looking at is immune system problems, which are common with mito kids. They started him on a med that is supposed to help with chronic pain. I feel we have found great doctors who can help find out more about my medical mystery child. Scarlett is doing great and it is very important to me she feels the same love as Owen. I can be honest and say lately I feel overwhelmed with our situation. I almost feel like not answering the phone or the door. I can't pretend some days, I just can't. If I had a cake in front of me with candles, I would close my eyes and wish....