Happy New Year

2016 has not started in any way I would have pictured it to start! My due date was Jan. 9th, my dads birthday and the day my grandpa died. I was hoping to have Sol on Jan. 9, but it wasn't meant to be. I mean the second we gave him an eviction date, he decided to pick his very own day! Although we knew he had the condition Lua had, we knew the new year would be similar to this, I still never pictured it. But he has already passed the days they gave him since they told us if we didn't have the exit procedure, he most likely wouldn't be intubated and would pass away at birth. Today he is 8 days old. He has already brought in a new year with us, so he is crossing things off his to do list with speed. It was a very special time to be able to spend the evening with him in his room, I held him while the new years eve ball dropped, and he got kisses from all of us at the stroke of midnight. I would have wished we could have done this not in the hospital but at least we had time with him.

I'm not sure what this new year will bring... I'm not sure if we will have a 1 year old next year, I guess I'm not promised to be here another year myself, or any of us. I dont know how long we will be in Madison, how we will be able to handle another trach, how may will adjust to being in school full time... So many unknowns for this year, and truthfully it pretty much scares me! It is kind of funny, thiago asked me the other day that if my sims were living our life, if I would quit the game and start a new one. At first I was think for sure!!! But then I thought about it and decided, no way I would, I want to see what would happen.. Besides Sims are not actually my life so it doesn't effect me any! If only that was actually true for me. The thing of it is, with Lua I believed full heartily that she would walk, talk, sit up, hold her head up, everything a normal kid can do, it would just take her longer. I feel like that blinded me from seeing how weak she was. But that kept me stronger. Knowing I just had to work with her and wait for the day she would reach these goals, kept me centered whenever doctors would say, wow she's so weak, wow she will be so much work, wow she will never get that trach out. I would choke back the emotions and say screw them, she will do what she wants...... But, she died. And now Sol is here and looks just like her. The doctors say the same things and it hurts a lot more this time and I'm no longer able to push it in the back of my mind and say, screw it, he will do what he wants.. Because that method got me no where.

Their condition is such a huge mystery, when we feel like we sort of know what it is, something is different and goes against the name of the condition. The pulmonary doctor that specializes in sma babies said he is weaker than sma babies... What is weaker than sma babies? My kids apparently. The diagnosis of x-linked sma is thrown out there for them, this has only been seen in 4??? Babies or some ridiculously low number like that. Life span being 2 years, and lungs being majorly effected from weakness. But we have no proof of this yet and regardless we are working with an amazing pulmonologist. She will give us all the tools we need to maximize Sols quality of life. Something I asked for with lua, a cough assist and was denied, Sol has already started getting it. This helps him to cough out secretions and break things up better than just suctioning and suctioning. The doctor wouldn't let us leave with out a vent, something lua really should have had for over night to give her a break to rest and restore strength. This doctor is truly amazing, she literally broke me down crying to her. I've never felt like such a baby in my life, sitting there crying to a doctor! She was kind though and understanding, she told me that I'm still grieving from our loss and having to go through everything again is a lot to go through and she understood. I know so much more this time, I can't help but wonder how long we will get this time around. I know people expect families who go through hard times to be ubber positive and blessed for every trial they receive, but that is sometimes impossible to do and I wish people didn't expect that. I wish I wasn't asked, how is everything? Because I dont know how it is going, I'm very sad with what is happening, I dont see a reason for this to be happening again, so I'm not going to act as if everything is great and positive over the situation. I know this is dark and no one wants to hear or read it, but it is the truth, not everyone has the fairy tale life or the picture perfect family.
I think I bummed everyone out enough for now... But there is still one thing I do really believe.... When I was pregnant with lua, things felt like they were going so well, I actually asked myself, I wonder what the next difficult issue will be for us. Well now I know. But thiago said the other day, we have to be due for a miracle by now. I really believe he is right. I no longer wonder what the next hard thing will be in our life but what will be the miracle that is coming up, we are in so much need for a miracle.