Day 0: This is screwed up

In the last few months, many people have said that they couldn't imagine what G and I were going through as we navigate Little B's complicated and scary medical issues. I thought I would try to articulate some of the thoughts I think about our experience. It's a bit jumbled, in all honesty, as are my thoughts on the matter. This might sound strange, but I haven't really tried to get in touch with my thoughts and feelings on the issue, as I honestly don't feel as thought I have a meaningful choice on the situation. Long story short, this is not the life I planned; not the life I chose; and not the life I want (for myself or my family). I wanted a typical life with an amiable spouse, two healthy, dorky kids (taking after their mom), a dog, decent job, and a retirement at 62. That being said, Little B's scary medical issues come with the life we got. I love my spouse and my kids profoundly. I will protect them and promote their health and happiness to my dying breath. It's that easy. I'm not sure that I'm willing to say that there is a grand scheme, plan, reason or purpose to why Team Weebert was dealt the hand of cards it received, but it's what we got and it's what we have to accept. Hopefully, each of us live the life we receive, whatever that life looks like, to the fullest extent and with as much joy as possible. I'm not saying that I'm a cheerleader or unduly optimistic or whatnot. We just don't have a choice. None of us get "do-overs" in life. And our lives, sadly enough, come with expiration dates. So it is very straightforward: I can wail and moan and be depressed that I didn't get what I want, or I can make this life work for us as best we can. Because honestly, my expiration date marches toward me whether I am happy or sad. So let's talk details: Chemo scares the shit out of me. I haven't personally had chemo, but the people I know who have had it did not enjoy the experience. Also, those people usually had chemo for a limited period of time. That being said, I get to trot my kid to chemo weekly for a hateful year -- Best. Case. Scenario. If he's sick, has to have surgery, has a bad reaction, any of that, it gets extended. One family who is going through a similar situation with their son (a little older than Little B) had chemo for 16 months. Hateful. I'm not sure how we are going to get through it. Our oncologist is bullish on chemo and thinks that it will improve Little B's quality of life. I don't know if I believe him. With the blended diet, Little B just isn't vomiting, doesn't seem to be in pain, and overall seems to be gaining in health. Chemo carries with it a host of side effects, complications (short- and long-term), and concerns. Add to that fact that Little B isn't two years old yet and that his brain is still developing, and I'm really freaked out about learning issues, behavioral issues, and post-traumatic stress issues (not to mention the scary side effects). That being said, Little B just can't have a tumor hanging out in his head, growing. He could be allergic to this type of chemo or the tumor could just keep growing if we don't do something. So we're going to go to chemo. Not a lot of choices. Some dear friends and former colleagues were incredibly kind and generous, and gifted Little B a number of fun toys, books, and stickers to pass the time while at chemo. We're bringing one new gift to each chemo session. We're bringing a portable DVD player and some movies (and books, because I am that sort of parent). We'll bring snacks and juice boxes. And we will rock chemo. We do not have a choice, so it will be fun for Little B. Because childhood is supposed to be fun, or at least not be remembered solely as time spent in the hospital. Long term prognosis: The long-term prognosis for kids with a JPA tumor is good. I'm focusing on the numbers. I hope that a belief in math helps, as that's what we've got going for us (well, that, and shockingly stubborn genes in both G and I's families). That being said, I hate playing a numbers game. I don't know if you've read the story about the Sword of Damocles, but I think that my life somehow reflects that of Dionysius -- I live in constant fear of losing that which I hold dear... my son. Unfortunately, this fear of losing that which I hold dear also leads to Little B getting away with bloody murder frequently, so I'm going to have to get my emotions under control and get the stinker into time out more frequently! How do I parent this bundle of complexity: Oddly enough, all these emotions, all these fears, all this resolve is tested daily, as I stand looking at Little B after he's hit A for the 34th time in an afternoon. He's not quite two, but he is remarkably communicative, remarkably willful, and really puts books on "terrible twos" to shame. He can throw a temper tantrum that is awe-inspiring. Do I just let him scream it out, or do I try to discipline it away? Do I try to avoid situations where I know he will melt down? Sadly, these aren't really medically complicated kid questions, these are normal kid questions -- two year olds are scary little creatures. Brain tumor or not. So, how am I doing? I'm a planner. By nature, I thrive with spreadsheets, process, and control -- not in the scary way, just in the way that feels better when things are organized. For example, since becoming a stay at home parent about a week ago, our house sports much cleaner, more organized cupboards! Many, many, organized cupboards. I feel better now that the cupboards are easier to use (and are less likely to bury an unsuspecting fool who opens the door to said cupboard(s).) Our life, from a medical perspective and how that interacts with our daily lives, is NOT organized. Take, for example, getting Little B to sleep: G still rocks him to sleep (he won't let me put him to bed at night), either G or I sleep in the same room as him (to monitor for issues/vomit, and to make sure the other one can get a full nights worth of sleep), and then he wakes up still once or more per night. It is a nightmare of a situation. But, we don't know how to improve it. We definitely plan on working on it, but there was the illnesses, the feeding pump, the vomiting, the hospital stay(s), and now chemo. There seems to be no normal that we can even teach the sleeping skills to, if you know what I mean. There is no spreadsheet I can contemplate to work this knot out. In any case, this is a ridiculously long post. I will admit that I can't sleep because I'm nervous about Little B's appointment later this morning. I've taken two bar exams and was not remotely this nervous. Will we get through it? Of course. Will we pretend to have fun? Absolutely. There is no choice in the matter. And that makes all the difference.