So, for the last few years, I have heard about, chatted online with, and read about other people with mito...but we almost never meet anyone face to face who lives a life similar to ours...someone whose life revolves around IV fluids, doctor appointments, medications, insurance companies, and medical bills. Rising gas prices affect us not because we may have to cut soccer from our schedule, but because we have to figure out how to cut something from our budget because the doctor appointments can't be cut and the medical bills still need to be paid.
Tonight, we got to meet them...a mom with whom I have been facebook friends but have never met, someone who reads the blog and was was so encouraging about how it helped her, and the mom who organized the new UMDF chapter who also helped pave the way with some of the local physicians. There was a room full of parents who truly understand...and it was so encouraging to see that we are not alone.
I often contemplate a post to the blog, but I fear it is just another repeat of, "This is hard, but God is faithful." and that people won't want to read it anymore, so I don't write. It is hard. It's painful to watch your child sitting in a chair looking awful, and other than adding in fluids, there's just not much you can do about it. You fear the worst, pray for the best, and fight with all your might against an invisible enemy. But to know that putting it in words helped even one mom was such an encouragement.
So thank you, Judi, for having a vision for a Central Virginia UMDF chapter. I know the time needed to get the job done was time that you didn't sleep. Thanks to the parents who showed up. And thank you, Dr. Cohen, for willingly dedicating your life to caring for and working toward a cure...or at least help...for those with mito. You make a huge difference in our lives.
Living with this disease is, to say the least, unimaginably difficult. Knowing that there were others out there is helpful...you can post questions and get answers and know that you aren't alone. But actually sitting in the same room with others who understand? There are not words...