new world

I have known this for awhile, but I think I am finally being able to accept that I live in a different world than most people do. I experience things some people will never ever experience, and they wouldn't want to either. It is one thing to live in a world where you are apart of a group who has had a special needs baby, I could go on to be specific and say an AMC baby. But then we joined the group of those who have lost a child. Then we joined the group where we had a special needs baby, lost a child, and had another special needs baby. If you look at that percentage wise, including the death of our daughter, that is a smaller number of people who live and experience those types of things. I know others are out there, but it is slimmer than just having a special needs child or just having a child that passed away. For some reason, today, I looked at it and said "Yep, I live in a different world than most people. Some days I'm okay with that, other days are terribly lonely, but today I feel okay with it. I can't even describe how hard it is for me to see facebook posts of perfect little families, or pictures of women who are pregnant and will have perfect little babies, that can be hard, that can be very very hard. I know I have said all of this before, but it is one of the main things I struggle with, the jealously of what seems to be other peoples perfect lives and how come I wasn't blessed to get that. I try extremely hard to push those feelings aside because I know they don't help anyone, but they are there none the less and I'd be lying if I said everything was perfect.
This holiday was a little depressing, for example. Seeing everyone going out and being on a lake or going camping, or going to the park or a parade, we can't do any of that right now. We tried to go to the furniture store in plover, a 30min drive, and it was misery! Suctioning and suctioning and so stressful, at this moment we are living in a very difficult world. We can't do things as a whole family like everyone else can. I can't take my baby with me wherever I go, we can't do vacations easily, and it is depressing. I think we still ended up having an okay weekend though. Our neighbor came over one day and had dinner with us and brought us an amazing dessert. She visited for awhile and even folded my laundry for me. The next day we spent some good outside time, all of us, the first time we all did that as a family and that did feel pretty good.
 I read something the other day, although, that made me feel a little less bad about Sol's condition. When I was reading some information about congenital myopathies, it said, kids with myopathies don't hit milestones as fast as normal. That sounds depressing right? When I read that though I thought, do they ever hit milestones??? Will he Ever hit any milestones? For sure not like normal babies. But there is a reason it is worded like that, because babies with these conditions CAN hit milestones and yes it may take Years, but hitting them none the less is progress. That makes me think if we work hard enough he could hit those mile stonessome day maybe. We still don't know how much muscle he has, so what type of milestones he will reach I won't know until they are here. I'd rather read they reach milestones later than typical babies than read they wont hit them at all, even if he doesn't ever hit them because saying it that way gives me hope.

My fear at this point will always be, what if/when will I lose him. How will I possibly be able to ever live in that new world, being the person who has lost 2 kids. I know it isn't for sure he will pass away, I know though because of his condition his life span is shorter than most. Again, I feel like I am writing the same things over and over, but these are the words that run through my head daily.

Ok enough of that lame complaining stuff... Some updates.

We have nursing, I went with the nurse that wanted more hours and it is working out well. Today I had that moment that made me feel so glad I do have nursing. I got to take May to school. I got to chat a little with her friends instead of rushing out as soon as possible to get back to Sol, and I was able to go to the cafe and have some coffee with Thiago. It felt great to get out on this super nice day! And know that Sol was fine. He has actually just recently, like this week, almost fully recovered from being sick. Yeah a cold that I had for a month, kept him really down for what felt like a month and a half. Plus I think we had teething happening here as well. When this all took place Sol stopped swallowing and became crazy with the amount of suctioning, and still is, but today has been just a tad better and we have been hearing him swallowing, so maybe he is getting back on track now.
He has recently been starting to coo while on the vent. He does this almost every night now! And we can hear him cry now as well instead of just going by heart rate! Which is nice, I can hear him cry before the alarm and can get to him sooner. It is also just the best thing in the world to hear your baby! He has also started making a little noise even while being off the vent, they are small sounds but it is a great start! Birth to three has been coming out for about a month now, and I think that is going well. We are working on more things we can do with his mouth to get him to get into that swallowing more and also working on his feet and legs before we end up doing any casting and surgery. Friday we go to madison for another follow up appointment.. I think this is the first week since we've been home that I didn't call them for anything, so they are probably wondering whats going on with us.. haha, well we will see how that goes.

I wish I could write better, deeper, or a way that is more understandable? But I get interrupted frequently and then I get out of the mood to finish what I am writing which is why it is hard to update often. Oh well, any update is better than none :)