I love social media. I love the DgtlTribe topic that this blog series is about, but I have been away from both for a while. I am a rather private person who believes strongly in the tenants of professionalism. But after thinking about the SoMe themes of authenticity, transparency and consistency often discussed on #GetRealChat, I thought I should write this post.
We recently found out that our 3 year old daughter has a rare autoimmune disease called dermatomyositis. We don’t know enough about it, yet. We see the pediatric rheumatologist on Monday.
The good news:
- It isn’t a lifelong condition. It seems to run a 3 year course and then you are done with it.
- We caught it early which is the best indicator for controlling the severity
- She doesn’t really have any pain (yet)
- I have a very supportive work environment
The bad news:
- It is attacking her muscles
- There is a lot we don’t know, yet. How bad is it? What kind of effects will the drugs have on her development? What will the next several years look like?
- She is 3 years old
So many parents know the fear that I, that we, are currently fighting.
I had a day where I was a complete “dear in the headlights” wreck. Then I moved into the beginnings of knowledge and a plan. I thought, “We can do this.” Then my body started to hurt all over. I was sporting a low grade fever. I forgot stuff I was supposed to take care of. I got really angry at someone for nothing. My house is a mess and I can’t seem to tackle it.
This low hum of fear vibrates through our house, under our conversations and silences, in my “Mommy snaps” to my two older children if they don’t immediately do as told. It is like I am in the room and standing behind a 2 way mirror at the same time.
At the moment, I don’t care what caused it, where it came from. Scientists don’t know. I just want to understand what we can do. I know the anger is coming though. The Why my sweet, sunny daughter? What kind of life is this? What kind of universe? It takes me a long time to get angry and once there my rage is ruthless. It takes me a long time to cool down. I am afraid of that anger, afraid of what might break in me.
This all has me thinking very deeply about Easter. Since having children, I felt I understood the significance and power of sacrificing the only child. But this situation, the visceral experience of a very real looming threat of pain, suffering and bodily harm to one of my kids is changing everything, is changing me.
I don’t want to lose the SoMe friends and network I have begun to build. As I have indicated on this blog, I believe that the DgtlTribe can be a framework for community as powerful as those in “real life.” I have made very real friends in the ether and I don’t want to lose those connections because I may not show up at the old stomping ground as often. I may be slow to respond in a realtime environment and have little to say when I am there or worse be testy or overreact to irritants. I won’t always want to talk about how my family is doing. But please believe, I am interested in what you are doing, what you are building, what you are thinking and I want to be supportive. That is who I am.
I don’t know what is going to happen. Things may look eminently manageable next week, even. But I wanted to say, I appreciate your support, your prayers and (with emphasis) your patience.