It will be ok

Sol had his first social outing to my grandmas funeral. A little earlier than I was expecting for him, I was hoping we would be able to take him to my sisters baby shower so he could meet the family. My grandma didn't meet him yet and she was hoping to see him at the shower and that was my reasoning for taking him. But, plans changed and we had her funeral instead. I would have gone by myself but in her will that she had made weeks ago she had wanted Thiago to be a paul bearer, so I really wanted Thiago to be there too. Since we don't have a nurse yet we had no one to be able to watch him, there really was no choice for us, we both wanted to go so he had to come with. That is okay though, it would have been nice to have had a practice run, but it went fine. He met a lot of people. We had to camp out in the corner of the church, where we could plug in all of our equipment. People came over by us and took a look at Sol. He was pretty cranky when we got there, so he wasn't into looking at everyone that stopped by. After a nap and a feed, he was doing a lot better.
We had a lot of people come over and talk with us. There was one comment that was made that I believe wasn't said to be hurtful, I don't think the person even thinks what they said was hurtful in any way, but it was extremely hurtful to hear. The commented was, "Sol looks so much healthier than his sister ever did."

He looks healthier than his sister Ever did. 

There are a lot of problems with this statement. I think the first one is they never met Lua in person, only on pictures, so how can you truly know if you have never met Lua?
Second, this is simply something you shouldn't say to a mother who has lost their child. It is like a slap in the face and it hurts, to hear that you think my child was always sick looking??? Thirdly, she didn't die because of only the condition, she died because she got sick and being sick with the condition made her weak. Sol and Lua have the exact same condition. Sol is bigger than Lua, he is also a boy, so yes, he is bigger than Lua, he has more chunk to him I wouldn't say that makes him healthier than Lua. Sol also didn't almost die at birth. He had many people in the room when he was born that were all prepared to help him as soon as possible, and they did. Lua had none of that and also went 70mins before getting intubated. She had to overcome a lot to give us the 7 months she did give us.
I really just wish, as much as I appreciate everyone for their thoughts and prayers, please oh please think before you say something, especially if you don't know much about the situation. I have a lot going on, a lot to deal with, I wish so badly I didn't have to train people in how to respond to us when they talk to us. I know Sol and Lua are/were different, I understand it is easy for people to only understand what they know and there is a lot no one knows about Lua and Sol. So the old statement really holds true, if you have nothing nice to say, say nothing at all... I think this goes for if you don't know what to say, say nothing at all! I appreciate the company more than the unneeded words.

I think one problem is that many people don't understand the condition, I know many people haven't taken the time to try to understand the condition because the comments people make tell me that they have not been paying attention to what I have been saying about Sol and Lua, I know I can't really blame anyone because it is a very unknown condition that many doctors don't know about. So, even though I feel like I have done this before, I need to take the time to try and explain once again what it is that Sol (and Lua) are dealing with. 

Although there are a lot of unknowns of the condition, after Sol was born the geneticists explained it to me like this, Lua's muscle biopsy showed basically no skeletal muscle. At some point in development, I believe by 16 weeks in utero, the skeletal muscle stops developing which caused lack of movement, which causes stiff joints. When joints don't move and become stuck in position this is called arthrogryposis. Arthrogryposis is a symptom of the condition, not his condition. Why his skeletal muscle didn't develop we don't know, but having the lack of muscle can make them tired easily, which is when the trach comes into place. When sol was born he was breathing but after 5 mins or so he became too tired to keep up with the breathing. Having the trach put in makes it easier for him because he doesn't have to work so hard by using his nose or mouth. Being weak also makes it harder for him to swallow which is why the gtube. Being weak also makes it terribly hard on their little bodies when they get a simple cold like Lua had.
Now he obviously has some muscle, so for those wondering will the trach come out, will he walk, will he eat by mouth, and for those who say they pray for total healing... we don't know what he will be able to do, just like we didn't know what Lua would accomplish. He can continue to strengthen the little muscle he has and we will have to wait and see what he can do.
I know so many wish this wouldn't have happened to us, I wish it wouldn't have too. Even more now, though, I wish there wasnt this stigma that everyone needs to be 'normal'. I wish more people knew what it was like to have, what I hear some calling, diffabilities. It is okay for people to be different. It is okay if some people need wheelchairs, if some need gtubes, if some need trachs. Really, it is okay. It doesn't make any one less of a person because of these things. It can make it scarier. It can make it more difficult. Which is why I wish more people understood what it was like. But it is okay and it will be okay.