There are some things I want to address, and of course this is the perfect forum for that!
First of all, to those of you who have been reading, I want to say a deep and heart-felt thank you! I have received a lot of positive feedback, a lot of praise for what I write here, and I want each of you to know how much it means to me. I have been lauded as a "super mom", as a "great writer", and apparently, I am making everyone cry! That is by no means my intention, but it means a lot to me that you are reading the blog, and that you are enjoying it!
I started this blog as a new year's resolution, because I thought it would keep me writing, because it would sort of commit me to writing for the sake of writing every day, or at least more often than I was, and since sitting for a moment or two and typing is much easier and faster (if not more satisfying) than writing long hand, I figured that I would have no excuse. I thought it would be a venue for displaying all of the every day things that we go through, and at the time that it started, our lives were pretty routine. It started out as a way to show people that we were not really extraordinary, that our lives were as close to normal as everyone else's, that there is a way to live with this disease, and while there is a lot that Sarah has missed, there is also a lot she hasn't, and a few unique experiences she has even gained. Most of the hard stuff, I saved for her personal journal. Then, when she got the secondary diagnosis, and it became an outlet, it was almost a relief that someone somewhere knew and understood what I was going through. Now, this blog has sort of taken the place of her personal journal, it has become her personal journal, that I am sharing with the world, or the four people who actual read this.
As for this road I'm on, I am doing what any mother would do for her child, at least, the good ones. You do what needs to be done for your babies; it isn't always easy, but you get through it. That's what it's been like for me, and that's why I started posting more on the blog as things got harder, I felt that people needed to know what I go through, and I don't post everything, and there are things that I mention but I sort of gloss over, but everything I post is real and true from my perspective. I don't always feel inspirational. I get frustrated and I get scared, and I get sad, and I even get morbid. It comes, and I feel it, I let it pass through me and then I let it go, and for a long time I kept that part of it out of the blog. But then I started to think about why, and I realized that it was more about protecting others from my feelings than protecting myself, so I started putting in everything, if only to let other mothers know that I am human, that I am not always this super mom fighting this battle with a straight face all the time. I do cry, not often, because no one has time for me to break down, least of all Sarah, but I do. I let the feelings come, whatever feelings they may be, I let them serve their purpose, and then I let them go. You do what you have to do, we all do. Not that it doesn't feel good to be called a "genius" or a "super mom", and I will not stop anyone who would like to continue :), but what I am doing is not unique or special. I love my daughter, more than I love anyone on the planet, more than I love myself, and I think every mother worth her salt feels the same about her own child. What I have to go through is harder than most, but I am not the only one. There are countless other mothers in this world, in this country, in this very hospital, who endure the same, and worse on a daily basis, and were it not for the INCREDIBLE support system that I do have (ahem, all of you!) I would not be able to get through any of it with my sanity intact. It is not easy for any mother to see her baby unwell or in pain. This experience is downright excruciating to watch sometimes, but if it's that or lose the one thing that means the most to me in this world, I will do it. I will probably cry like a baby afterwards, hell, I'll probably cry more than Sarah will, but I will get through it, because at the end of it, there is a chance, not at all a guarantee, but just a chance that I get to keep my daughter, and wouldn't any mother as in love with her child as I am do the same?
Now, that being said, not everyone is as in love with everything I post here, and that's okay. I do not expect that everyone is going to love everything I post just because I do, but that's the beauty of mass media. There is so much information out there, not all of it is correct or favorable, and not everyone shares the same opinion of what is good or favorable, but we all have a choice, and at the push of a button, all of that information just goes away! Basically put, IF YOU DON'T LIKE IT, STOP READING! I don' t think I can be any simpler or any clearer than that. This blog is about my journey with my daughter, and I am trying to be as real and as honest as I can. If you are more worried about grammar or syntax or word choice, you are missing the fucking point.
It is sort of a "taboo" subject, because people only want the inspirational side of childhood cancer. They don't want to deal with the harsh realities of what even the children who survive have to go through to do it. Everyone loves a happy ending, and I get that, but that is not life. Over half of these children die. It's not negativity, it's a fact. It is an unpreventable fact, and sometimes, most times, and incurable fact. That's reality. Can Faith and Hope and Love supercede that? Absolutely. Are there children who beat this through means that even the doctors don't understand? Of course! But I call a spade a damn shovel, I always have, and this is my online journal, it is not an article. I am reporting here my experiences with my daughter who is battling cancer for the second time. Not everything is going to be accurate, and almost nothing is sugar-coated. I misspell things, I use run-on sentences, and I was an English major! What is written here is the way I feel at the time. I am not writing for the L.A. Times, and I am under no obligation whatsoever to "watch what I say" or print a "retraction" if I get it "wrong". It is what it is. Deal with it.
As for Day 25, Miss Boots was up all night watching Netflix, as her days and nights are now officially confused. Nurse Kara says that more than likely, today is the day for the NG tube. This means that UNSEDATED, they are going to be putting a feeding tube through Sarah's nose and down her throat all the way down into her stomach (I am unsure of whether they bypass the stomach and feed straight into the intestinal tract). Yeah. they are going to do this to SARAH, who barely tolerates an oxygen mask, and only near her face, not on her face. SARAH, who I have to cajole for half an hour just to take her oral medication will have a team of people holding her down and trying to shove a tube into her nose and down her throat. Yeah. the idea is laughable at best. Nurse Kara, who knows and loves my daughter almost as well as I do, is doing her best to keep it from happening, and if she can't she is trying to keep it as easy as possible on everyone, but we both laughed and said that if we had to place bets on who would win the fight of NG tube placement, our money's on her. If they do manage to get it in, I am going to be hard pressed to keep her from pulling it out. It's going to be a rough couple of days, because my daughter is a little baby genius, and she is a cunning little thing. She will lie in wait until I think she's "used to it", until I let my guard down, and the second I leave her alone to take a 30 second bathroom break, she'll have that thing out and a huge mess waiting for everyone else to clean. Sigh.
This is our life, and the truth is, I am not the hero for going through this with her. She is the hero for going through this first hand. Were she old enough, I would be encouraging her to write it all down for herself, but as she is not, we will both have to trust that I am doing a good enough job of writing it down for her, and that I am doing it justice.