Well, I have a lot of things to try to get done today (and in a short amount of time) so that means it must be a day to make a post!
I am still slightly trying to get over how fast summer went, I think we managed to do a lot but also not everything that I was hoping to squeeze in but that is okay, maybe next year. I am getting more excited for fall activities, which is actually huge because for the last 3 years I truly loathed fall, pumpkins, apple orchards, all fall things.
A month from today Lua will be gone for 4 years. Hence the reason why I have hated fall so much. I have thought about it the situation a lot over the years (ha obviously) and I feel like this year I am in some way accepting (??) of it. I don't know if that is exactly the word, and I can't say that it will stay the same as the year goes on either. But this is what I have been accepting, as I talk to myself daily about it.
Lua's death Was preventable, having Sol shows me that. She did not have to die because she got a cold. No way, not at all. Sol has now had 5/6 colds in his short 2 1/2 years. He just got over one this last week, I didn't even have to call one doctor about it because he got over it quicker than usual. When I think about Lua and her death, I know for a fact it could have been avoided. Doesn't seem like something you should be able to accept, probably, but what I also know is that being at the hospital that she was at, she was never given a chance to live. I have to stop blaming myself on not transferring her to Madison like I wanted to, because I didn't know. I didn't know that the two hospitals literally meant life or death. We are always told that the Childrens Hospitals are the best. I've never dealt with any medical issues in my life before this, I couldn't even tell if the treatment we were getting there was good or bad. Therefore, I have to accept that we didn't know, we didn't have the contacts we have now, or the knowledge, or the experience and none of that is our fault. How do you learn about something except through experience? Not the way you want to experiment something, by using your own children, but sometimes you are not given the choice I suppose.
It probably sounds terrible, I accept that she didn't have to die, and also that I didn't have the knowledge to know any better, but that is where I am at currently. So example, when I start to think of the situation, I start to get really upset at how avoidable her death was and that can really lead a person into spiraling down the rabbit hole, that is why I also have to remind myself and accept that our support system didn't help us at all when she got sick. I remember calling milwaukee and telling them she was dropping into the 50s for oxygen. Yes... 50s! We go to the hospital if sol is at 90. And they told me, "lets just keep watching her and see if she can get over it" I didn't know the other option if she couldn't get over it was death. I thought there was something in between like transferring her to the hospital!
I have now seen a handful of parents that have kids with neuromuscular disorders be treated the exact same way we were treated at milwaukee childrens. I tell them all the same thing, go to madision! I know one family, recently, fought for the right equipment, that madison gives in the nicu, for their child when they got sick and they were able to get it. But the crazy thing here is that I had to say they "Fought" for it. It should be given not asked for over and over again until they finally give up! Anyway, it just blows my mind.
This year I have also gotten a lot better with my insane amount of jealousy that I have for families that are whole, normal, typical families with healthy children. This is something that has been really hard to get over. Especially having a facebook account. Yes thank you everyone for shoving your happy perfect little families down all of our throats -- that is the crazy jealousy part I was talking about.
Most days now, I feel like I have accepted where we are at. It is a super hard life most days, but it has also become the only thing I have ever known! I haven't had a typical child in 7 years, I can't even imagine what that would be like. I couldn't change Sol now in fear of losing all of his silly, stubborn, naughty little personality. Sure he probably would be the same if a typical child anyway, and it will always be much harder this way, but it is the only way we know and I absolutely adore the child he is becoming. We are truly able to be so thankful for every day we get because we know we will never be promised another tomorrow, this is the life you live when you have a medically fragile child.
While this all still kinda seems depressing, this fall may feel like a more normal fall than we have had the past few years. I don't think we will feel great come the day that Lua actually passed away, but maybe this year it wont affect the whole season. I also can't ever see myself going back to the same pumpkin patch we were at the day before she died, but who knows maybe in time. The thing that hurts the most is when Lua's death is seen by everyone as not a big deal. Well it has been 4 years so everyone should really just be over it. Parents that lose a child at any age will never be over it, that is one thing I hope most people will understand.
