An Emotional Outburst

I was searching through pictures today at the request of some family and friends. We haven't had a family picture in over a year, mostly because of chaos and some part due to my insecurities. This one immediately brought me to tears, not because of its tenderness but because of the look on my sweetie-pie's face.
It was a busy day. I'm trying to remember if I gave in to his constant need for food or if I tucked him in the stroller and begged him to sleep just a little longer, not knowing how dangerous it was. I had no idea at the time of this picture how desperate his situation was. The look on his face breaks my heart.
This disease can be so deceiving. If you saw my sweetie pie today you would see him running around like any other 16 month old. He's into everything, loves to dance and play with his sisters, and seems as healthy as the next kid. Many people compliment us on how well he looks asking if we are so happy that he is better now. And yes we are so happy and he is doing well. But, most people don't realize it is a daily battle to keep him that way. Its constant guilt and worry over missing an alarm or getting sidetracked on the way to prepare his cornstarch treatment. Its wondering everywhere you go if this is the day he's going to catch a stomach virus that will land him in the hospital. And after all of our best efforts there is still no guarantee that he wont have organ damage or any other complication that comes along with this disease.
I try really hard to be positive and proactive about this all. I read anything I can get my hands on and have recently endeavored to learn all I can about metabolism. Lately, though Ive been feeling quite depressed and overwhelmed.

At our last visit to the Metabolics Dept. It was frustrating as usual. I spend hours there defending choices that I make, trying to understand what they want me to do and just plain get a handle on everything. I leave confused, frustrated, and practically in tears. The cherry on top was when I was told that "I may have to make a choice. Evan being overweight or him developing liver cancer or needing a transplant" As if there is a choice in any of this!!! I don't know why but this just infuriated me. Mostly because I know its not really true anymore with proper treatment, that there is a doctor who is reversing liver damage in some of his patients and my doctors are too prideful to make the call and take his advice. So I have to continue to sit by until August and allow what ever to happen to him while we wait for our appointment in Florida. I can't stand sitting there listen to doctors who may mean well but forget what disease they are treating while talking to me or fumbling through an appointment seeming as if they may or may not understand what they should be looking for.

Another thing that has been weighing on me lately is his future. A friend of mine has recently sent her son out on a mission for our church. It is a long look forward to right of passage for our religion, and opportunity to grow and serve the Lord. A dream that I have for my own son. But in contemplating this I have realized this may not be possible for my sweetie pie. This and some other more private and delicate impressions that I have had, that I can not even bring myself to speak and just added to the heaviness on my soul.

I feel like this post is turning into a pity party, complaining session, that is not what I really want it to be. I just needed to get some anger and fear and pain out. I hope that some other mom will maybe just even get some validation from I'm saying. This is so hard, but not too hard. I have many things to be thankful for with all that has occurred and how well he truly is doing. He amazes me and is a bright shining star in my life. And if I can hold on to those positive things, I CAN DO HARD THINGS.
So I guess that is enough of my little meltdown. Ive got chubby cheeks to kiss.....