I finally found a mito forum, thanks to Traci. I read daily about other families and their struggles with this heinous disease. Everyone who has it presents differently, but no matter how they present, you realize that they are fighting the same battles you are.
This week, there was a family who rejoiced in the birth of a new daughter...and that night grieved over the loss of one of their other children who suffered with mito. How do you even process that? There are single moms out there who have a child in the hospital for six weeks and have to fight the school system to get their child enrolled in a home bound program.
So, we are fortunate. I home school, my son is not in the hospital, and I'm still married. Does that make today easier? Nope. When Will comes to me complaining of random pain, I have nothing to offer him. He can no longer take Tylenol, so do we take Advil? Do we just learn to deal with the random pain? For how long will we be able to do that? What about his body temp? He's suddenly burning up...but now he's cold. He's not sleeping so he is exhausted and has an insanely short fuse. There's always this sense of impending doom, like I am going to wake up tomorrow and it's gonna be an ER day instead of a day preparing for school. Oh, and we have to plan our school year to accomodate Will being non-functional and maybe my not being here to teach while still moving everyone forward.
One of the moms on the aforementioned forum wrote a blog for the National Organization of Rare Diseases. It can be read at http://www.theprojectcharity.org/blog/mito-what-mitochondrial-disease-and-its-impact-one-families-story/. It makes me very sad for her and her family because I understand what she is going through. It also makes me realize I'm not so alone in this world in grieving over my son's health issues and what it is doing to him and to my family.
Today we got a call from a case manager with our insurance company. Woohoo! We finally got a case manager. This is one of those, "I wish we didn't need it, but boy am I glad we have it" moments. Finally, one person who can help navigate the insurance nightmare. Someone who can help find ways around the appeal processes. (I have two appeals I am currently writing.) She asked me loads of questions about Will's medical history, does he take any meds (um, you mean the ten he takes every day???), and finally asked how this was affecting our family financially. Amazing.
SO, now that I am finished being depressing, I'm heading to bed. My basement is almost finished, but my office and school room look like a tropical storm took up residence. Tomorrow is another day! Maybe we'll even spend it cleaning and not in the ER!