I’ve been running a site, CMVsanity, for a while now. For some years, actually. It’s all about my son, Jack. Long story short, I contracted the virus CMV while I was pregnant with him. I had never had it before, which can pose some pretty major problems. It did. He is deaf in one ear, partially deaf in the other. (His hearing will continue to decline.) He has some vision issues (CVI...if you know what that is.) but they are constantly improving. He has mild CP, and epilepsy. His paperwork has other words as well, but I’m just giving you the nuts and bolts here.
The site was very therapeutic for me, and I’m glad that I did it. When I started, there were virtually no other sites like it. I was yearning for contact with other Mom’s like me, and it was a way to reach out to them. It was a way to share information and hopefully get the word out about CMV. It was a fun way to showcase Jack’s accomplishments as well as share some frustrations.
Now, he’s 5. His biological Father passed away when Jack was 1, and I’m remarried to a gem of a man I’ll call “Da”. He and I have recently given Jack a baby brother. Time marches on. I still have some of the above listed desires and goals, but I would also like to move in a new direction. This was prompted, I admit, by a hard drive crash. (OMG!) I know I can rebuild the old site, and had started to. However, as I thought about it, I found myself wanting to move on from it. For a while there, I identified myself, and my son, by his virus and how it changed our lives. I would rather share about Jack in an arena that isn’t so centered on the acronyms on his paperwork. I would also like to share about all 4 of us, and how we live.
Yes, it’s a snapshot of a family that includes a little boy with special needs. A snapshot of all that he is, and can be, as well as how we are ALL important in this family. I still hope another “CMV Mom” stumbles across this site at 2am as she’s obsessively clicking away, trying to avoid WebMD. (I’m not saying there is anything wrong with WebMD, so please don’t sue me. Us special needs Moms can get a little click happy though, and it’s not always a good idea...) I hope she sees it, learns a bit, and knows that life will go on. She, and her family, will not be defined by a virus, or what it did. Life will be tough sometimes, just as it will be for everybody. It’s also full of beauty, and wonder. Hope, and laughter. Blessings, and awe.
"Life is not about waiting for the storm to pass, its about learning how to dance in the rain." ~anonymous
