Facts and A Myth

Fact: Tater is great and none the worse for the wear after yesterday. In fact, he's perfect.
Fact: It takes 2 minutes for a fire truck with EMS guys to get to our house
Fact: It takes a really good friend to know without word that you need her to drive you 90 miles/hour to your house
Fact: LBird can make the drive from the pool to our house in less than a minute (LBird is now Danica, as in Danica Patrick the race car driver)
Fact: I can run very fast in flip flops
Fact: We have the best nurse in the world
Fact: Tater loves to be bagged because he's a strange child
Fact: You can prepare for every emergency involved with a trach or a ventilator and it will still take you 30 minutes to realize a plastic filter has caused the ventilator to malfunction
Fact: You can throw a plastic filter pretty far when you're frustrated

Seriously, everything is fine. Yesterday was a great test of the emergency protocol we have for Tater without an actual emergency having to take place. Tater was never in any distress. The filter was cracked and the ventilator worked fine after I replaced it. Our nurse did everything she was supposed to do and we realized a couple of things we hadn't gone over so now she's truly prepared for an emergency. And we were able to meet the captain of the fire station close to our house and the EMS guys are now familiar with Tater and his stuff. I made the guys some muffins and we're going to be big buds, I can tell. Of course, Mr. Awesome was on his way home from being out of town. All the big stuff happens during or just after a trip of his (no pressure Honey!).

And now for a myth: you can ignore something and it won't happen. Ugh. The fact is, Danica and I planned a trip before all of Tater's trach stuff. We put money down and planned everything around Christmas, but after a 3 month hospital stay with the Tater I just couldn't see taking the trip. I didn't want to think about it so I thought it would go away if I didn't. I know I need a break and blah, blah, blah. The thought of leaving my boys is agonizing after everything that has happened. But Mr. Awesome was very insistent that I still go and things started falling into place: we have a great nurse who loves Tater, Mr. Awesome's aunt is coming to town for a couple of the days I'll be gone to help out, Wissa wants Toser to come to her house the rest of the time, Mr. Awesome won't have to take off of work... So early Thursday morning, Danica and I are hopping on a plane and going to an all-inclusive place in Costa Rica with my parents and a couple of their friends.

I'M CRAZY!! It's actually faster for me to get to Costa Rica than to the West Coast but I'll be out of the country and my baby might need me. I'm not worried about who I'm leaving him with because in all honesty, Mr. Awesome and the nurse are probably more alert to things than I am. I'm worried about how I'M going to survive thinking about him all the time. Hopefully some yummy margaritas will take the edge off that and Danica won't let me pine tooo much. Ugh. I'm seriously nauseous right now. I know I'll survive. Tater will survive. It will be a funny story in 20 years (Tater at 21- "Yeah, when I was 14 months old and on a ventilator, my mom took a trip to Costa Rica. Can you believe she abandoned me like that?") We get back Monday so we won't be gone for too long and hopefully Danica will still be my friend after 5 days of listening to me worry about my boys.

Perfect Control

I guess I'm more of a control freak than I thought. (Mr Awesome is nodding his head in agreement right now.) I like to think I'm pretty easy going but I'm realizing I just cannot give up control over somethings and one of those is the care of my son. I know I need help some days-nursing is great in that it lets me spend time with Toser while knowing Tater has someone with him and he isn't just hanging by himself all the time (which he is content to do and I have to make sure I don't take advantage of that too much). But it's nice to have control over our days and not have to explain my plans or why I want something done a different way on any given day. We had a week and a half with no nurses and I kind of liked it. I was worn out but I liked it.

I know most of you think this is crazy but we're thinking of letting our night nurse go. Tater isn't requiring as much care as he was when we first came home and we feel like we're having to find things for the night nurse to do. We really like our family time and want Nate to be downstairs with us as much as possible. Bedtime is crazy without the extra hand but it would be crazy if Tater didn't have the trach/vent combo. We want things to be as normal as possible and normal for us is not having someone waiting on us to finish dinner so their job can start or not going on a walk because Tater's bath needs to start at a certain time. Of course, it would be ideal if we could have her occasionally so Mr. Awesome and I could go on dates and such, but that's not possible so we'll sacrifice that for the greater good. (Do I sound ungrateful or what? It's just really hard for us to have someone in the house all the time-especially if we're both here and there isn't much to do in the first place.)

We'll keep our day nurse. It's still difficult for me to have someone here the hours she is but it's a better fit, all of us like her and she really is a big help. She doesn't mind Toser climbing into her lap to read books and she loves both the boys. Plus, she's Italian and is teaching them some Italian phrases. Win-win all around in my book.

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So the last few days have been perfect. Saturday we went to a local museum to see barnyard animals and to have a picnic. The weather was perfect, the boys were perfect-we had so much fun. Then some of my family came over Sunday for a picnic and that was great. And while yesterday started out kind of bleh for me, I rode my bike to a dear friend's house for a glass (or 2) of wine last night and the day started looking up. It was wonderful to sit and talk with a kindred spirit who I know is on her way to being a BFF of mine (love you Bek! I will be very mad if you don't do those t-shirts). And to finish a great evening, while I was riding my bike home the weather cooled off, the wind was blowing, the moon was rising- it was a gorgeous ride. When I rolled into the driveway I realized LBird and her daughter were here. Yay. I love LBird to death and while I tease her way more than I should, she still comes around. She's one of my best friends in the whole world and I'm lucky to have her in my life. She's really hating that I'm calling her out right now but that's one reason why I love her.

Hmmm? It seems the things I cannot control in any fashion are the things that are making me happy. I wonder what that means and if my thick head can handle that? Tater is healthy, Toser is happy, Mr. Awesome and I only want to kill each other occasionally. Life is pretty darn good right now.

Random Thoughts (or Venting)

Never say never because never usually finds a way to make you eat crow. Before you have kids you say, “My kid will never __________.” And then of course your kid does whatever you said they would never do. I think it’s the world balancing itself out by taking self-righteousness and replacing it with humble justification. Toser watches more TV than I would like some days (my kids won’t depend on TV for entertainment or “self-righteousness before kids”) but I need him to be occupied more than 15 minutes at times in order to get stuff done (humble justification). He’s not addicted and turns it off when he’s done but still, it’s more than I would like some days. Oh well.
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I used to pride myself on being someone who could keep things straight in my mind without having to write anything down. I could remember a phone number after dialing it once. I could keep appointments and remember birthdays without having to look at a calendar, although I would usually put in a calendar, just in case. Well, now I need 10 calendars and I have notes all over the place and I still can’t keep things straight. AND I HATE IT!!!!! Notes are for the weak, or something like that. So, I knew Tater had a follow-up appointment in Bham on the 14th. Okay. Been thinking about it, what we need to take, questions to ask, etc. Well for some reason none of that entered my mind when I started planning a birthday dinner for a dear friend of mine for the night of the 14th. I sent out emails, planned on picking everyone up and was excited about actually doing something with my girls. I would think about the dinner for a second, think about the appointment in Bham the next, and it never occurred to me that I wouldn’t be able to do both. The appointment was one thing, the dinner something else, even though I knew we wouldn’t get back from Bham before 8p and the dinner was at 7p. So I had to bail on something I had arranged and miss out celebrating with a friend because I’m crazy. Sorry H.E.!
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I got a parenting magazine yesterday and one of the cover blurbs is “Boys vs Girls: Who’s Easier to Raise?” It irked me. Some of the stuff people worry about seems so silly to me. (One of the other blurbs on this magazine is, “How to Handle Annoying Advice.” Um, smile and nod while the offender is speaking and then when they’re gone mutter under your breath how stupid that was?) I mean, c’mon. What does it matter which gender is easier? You have boys, girls or both and you raise them. Period. Why make it harder on people (okay, the magazine is geared towards moms) by raising an issue that no one can control. There is no guidebook to life. Everyone is doing the best they can with what they have. We make life harder by trying to control things that are uncontrollable. We make ourselves miserable by comparing ourselves to others. Why? What’s the point? The best gift we can give to ourselves and to our kids is to live life by our instincts and with love. The other stuff is just stuff.
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The Bham follow-up visit yesterday went very well. The Pulmonology team at Childrens’ is great and all about making life easier for kids on vents and their parents. They asked what is working for us and what isn’t and changed the stuff that isn’t. That simple. They look at each kid for what they are and not what some textbook says they should be. While Tater was still in the hospital, one of the doctors said that we’ll go where Tater takes us and that seems like a good plan to us.

Happy Mothers' Day

I'm working on a post... I promise I will try to get an update out this week. We didn't have nursing last week, I was sick with the stomach bug from hell and life with 2 boys is crazy enough.

Just wanted to say Happy Mothers' Day to my mom (wonderful woman, we call her Coco-mwahh! Love you!) and to all the other Mom's in my life. I wouldn't be who I am without the support of all of you.

And also, can you say a quick prayer for Mr. Awesome's Aunt Judy? She's like the mother-in-law I never met-crazy and loving and ready to bring me back down to earth when I need it. I love her so much and she's been dealing with an illness for a while. We haven't been able to keep in touch with her as much as we would like due to obvious reasons but that doesn't lessen our concern or love for her. We love you Judy!