Reality Check

     During the last few weeks of being home from our trip, Lydon has continued to be tired and irritable which in turn makes me quite tired and irritable and admittedly (despite my best efforts) not in the best mood! I have been feeling down or a little sorry for myself if you will because no matter how hard I try to get all of my chores done and get to bed early, it just doesn't seem to happen. I have been SO tired lately.  Every night before I kiss Lydon goodnight, I push several syringes full of meds through his G tube and connect him to a feeding tube for fluids, a pulse ox, and oxygen. Face it, night after night, this is tiresome. As a Mom, this is very upsetting to realize that this is what is required to keep Lydon hydrated and oxygenated and hopefully rested night after night. I am not complaining about having to do these things, I just wish they weren't necessary.
     Today, Aidan my 7 yr old. wanted to go to work with me while I sit with my Grandmother.  I felt somewhat honored that he had the option to stay home with our beloved sitter and play outside all day with his friends but he wanted to be with me! ;)  We hung out and laughed together and talked but after a while he retreated to the play room. My Grandmother was dozing, so I had the very rare occasion to watch something of my choosing.  I came across a show on ID that was about a lady who had been wrongfully imprisoned.  I figured it would be a "feel good, happy ending" so that's what I chose to watch. It turns out that this lady was a victim of awful spousal abuse.  She was repeatedly raped and beaten. One day she had finally had enough and in self defense took a gun and shot and killed her husband. A jealous "friend" who also happened to be an FBI informant reported that she had plotted this for the life insurance money. Based upon his testimony, she was convicted to life in prison. After almost 20 years in prison, her case was reopened. Despite there being evidence that A.) She was the victim of severe abuse, B.) the FBI informant had perjured himself on the stand C.)  Evidence that her husband had also raped their daughter and D.) She was a model prisoner who gave Bible studies and had even formed a choir for the inmate service on Sunday mornings her parole was denied for six years!! In an unexpected twist of events, she was diagnosed with Lung Cancer and so her attorneys filed for a Grievance/Merciful release and it was denied yet again! Finally, the support from the community was overwhelming and the information regarding the FBI informant was finally made public and she was released! She had ten beautiful months with her family before she died. Her attorneys wanted her to sue the DA's office for withholding such vital evidence that effected her case but she would not.  She has such a positive attitude and such unwavering faith.  She said she was going to enjoy every moment of freedom she had and let God take care of the rest!
     So, what is my point in all of this and what does it have to do with Lydon?  Maybe this is just for me and it will not make much sense to the rest of you but this is what I see.  I do have ample reason to be upset about Lydon and for Lydon, no doubt. BUT, I also have SO very much to be thankful for.  It was amazing to me to see the story of this lady who was repeatedly abused, saw her husband rape their young daughter and in trying to protect both of them spent most of her life wrongfully imprisoned. I tried to imagine how she mustve felt to see her young daughter grow up while she lived in prison.  She could have become so bitter and angry and mustve felt so abandoned by God when year after year, her parole was denied even after she was diagnosed with a terminal illness. But she remained positive and stayed strong! After her release, she lived for almost two years longer than doctors expected her too and in turn made a huge impact on California's laws regarding victims of spousal abuse. I dont know what the future holds for our boy and I most definitely have "bad" days where I worry about him and hurt for him but I will NOT give up! Somehow, someway, Lydons story is going to make a difference. Maybe he will help some of his doctors connect the dots to not only diagnose him but other kiddos who suffer with the same things that he does. Maybe it's so that Jonathan and I can be used to inspire other parents in some way or maybe these obstacles are molding Lydon to be the most tenacious,  compassionate, innovative Pediatric Neurologist in the world! ;) I dont know what the purpose of this journey is. We have encountered many obstacles already and I'm sure there will be more but today I was so encouraged and inspired to fight harder to remain positive even when my heart is heavy and things seem unfair. The reality is things in our life with Lydon could be SO much worse! Despite his need for oxygen, fluids, meds, etc, he is a very happy secure little boy who knows that he is unconditionally loved by SO many people and we make sure that he gets to do a lot of living!! So far, we havent gotten very far with getting our new meds approved.  We are waiting on insurance and we all know how that goes.  I will update when I have more information.