I want to talk about the power social media has. It has the power for good, and the power for less savory things.
I've learned a lot about the human condition thanks to social media. Some of it good, some of it bad. I've seen it turn me into a raving lunatic, and then seen it give me some of the most heartfelt and beautiful declarations of thanks I have ever received in my life.
Last October, I went a little crazy. Not like totally crazy, but I was in quite a state of panic. My long time manager (and friend) at work had been demoted, and I wasn't sure if the new manager would keep me with my limited availability thanks to the demands Heterotaxy/CHD puts on me to keep my daughter healthy. All I knew was I had to work to keep food on our table. I lashed out. I told people about a good friends past transgressions, all because I felt left out. Because I was not able to go down to the hospital and support a Mom who desperately needed it. And because this other Mom had the ability, (she didn't work and go to college like I do - lucky lady) I was upset. I thought we were working as a team, but it seemed like that wasn't happening anymore. And you know, we probably both were wrong. I know I was. So I, in a drunken stupor, told fellow Mom's like myself and this friend of mine, about her transgressions. This got back to her because of another Mom who was at this "night out". It was deemed as me trying to spoil my friends successes, which was not at all the case, but people can think what they want to. I was drunk, upset that things were being kept from me, and concerned that the local hospital would tell a family that they could not publicly announce that their child receiving a heart transplant. I don't care if they did it out of respect for the donor family, no other hospital I have ever heard of has asked a family who is receiving a donor heart to not tell anyone. It just seemed fishy to me. I was mad. I felt the local hospital had no right to operate on this child, and has no right to operate on any child with Heterotaxy and Complex CHD. I projected this anger on everyone. And for that I am truly sorry.
So about a month ago, I left the Heterotaxy Community at large. I had become so involved in others lives, that I lost my own. Let me tell you something. People will believe what they want to believe. It won't matter if you shove data, mortality rates, or even the known history of a facility in peoples faces, those people will do what they want. Its not even worth it. So I gave up trying to help other parents like myself. I couldn't do it anymore. I figured if they really wanted my help and advice, they knew what information I had and if they wanted it, they could find me. And one did.
A friend told this Mom about me, and we began discussing. It was wonderful. And I helped this Mom. I helped her navigate this new diagnosis, and she publicly thanked me. I didn't try to shove anything down her throat. She understood my knowledge of the situation.
I left the Heterotaxy Community because I felt left out. Because I do not have the capability to give freely of my time. I felt so horribly left out. I was jealous. Jealous because I have to work. Some of these Mom's don't so they have the free time.
What I have learned is ~ I am glad I work. I am glad I go to school. I have never felt better and more at peace with my situation. Not letting Heterotaxy be the end all be all of my life has helped me so much. I have a child with Heterotaxy, Heterotaxy is not the sum of my existence. For my own mental health, all this was necessary.
Now I can hear God speak to me again. Before I couldn't hear Him. The cacophony was so loud, the tearing up of myself to get others to see the light was destroying me. It is not worth it. I will never be Ghandi. or Mother Theresa. I'm just Danielle. And Danielle is much more than a Mother of a child with Heterotaxy.
And to that old friend that I "betrayed" ~ I am sorry. But as you can see, you have the success you desired. I am so very glad that you do. Thank you for being there for our rare and precious children.
My plan for the future ~ begin to work with the medical professionals that help these children. That begins with the Stanford Med X conference. Either Med X will change my life completely, or I will know that professional advocacy is not in the cards for me. If that is so ~ then I know exactly what I am to do ~ teach.
Thanks to everyone for the support, love and well wishes over the years. I will still be around. The pulmonary AVM specialist will still be available should you need her, but she won't chase you down and try and convince you to go to Boston, CHOP or Stanford. Crazy Danielle is gone.