What are you doing . . .

in 2010?

I hate resolutions. I hate the word; I hate the very idea of them. I feel like, when I set resolutions, I invariably set myself up to fail. However, this year, I have decided that I’m not making resolutions so much as taking up challenges and setting goals. So, my goals/challenges this year:

1) Complete the read the Bible in 90 days challenge (I did day one already, so I’m off to a fantastic start).

2) Run a 5k. I have the Couch to 5K app on my iPod and I have good running shoes and a treadmill. I’m ready to go with this on.

3) Organize and declutter my house. Those of you who have followed along know I tried Regina Leeds last year. For reasons I don’t want to pursue too much, I lost momentum and that ended sadly/badly. So, new year, new guru: Organize Now!: A Week By Week Guide To Simplify Your Space And Your Life and we’ll try it again. I’m hoping that the addition of the Motivated Moms chore list, I’m going to be able to accomplish this.

4) Pursue happiness by developing my own happiness project/create my life list. I have (not surprisingly) two books I’m going to use for this (if you haven’t figured out that my biggest decluttering project is going to be my books, then you don’t know me well enough yet). The Happiness Project: Or, Why I Spent a Year Trying to Sing in the Morning, Clean My Closets, Fight Right, Read Aristotle, and Generally Have More Fun and Creating Your Best Life: The Ultimate Life List Guide
It’s sure to be interesting, at any rate.

5) Keep a gratitude journal for a year. This is actually a gimme at this point because I’ve been doing this every year. I use one of these: Journal 10+ 2010-2020 I bought it last year and I LOVE IT.

6) Keep an image journal for Katie. I did this for Ben between one and two, so now I’m going to do one for Katie. These are written images, but in Katie’s case, there’s also going to be a photograph a week for a year. It’s not as daunting to me to take Katie’s picture every week and I think it’s going to be fascinating to see how she grows.

7) Become a more intentional eater. To some degree, I want to follow Michael Pollan, but not all the way. I believe in good food; I don’t drink diet soda and I use real butter. Having said that, portion control and more thought are going to be my ways, hopefully, of bringing my health back under control.

8) Develop an exercise habit. I don’t want to do the 5K and then sit on my ass for the rest of the year. I want to be more active. To that end, we are joining the Y in order to give me protected workout time (child care every morning for two hours is enough to get me in there, seriously). We have tons of active Wii games, a treadmill in our bedroom, and with all of that, I fully intend to be healthy by the end of 2010.

9) I’m also paying close attention to Kristen Chase’s current challenge. I’m not going to elaborate on that except that I will be playing along as soon as I can (though it may require a trip to the doctor before I can, dang it).

10) Develop a better plan for our homeschooling and actually implement it. I need to actually apply and use all of this wonderful stuff that I’ve collected to learn with. Not as much to sit down and do book work as to experience. Also, need to be taking better advantage of the options available to him at the zoo, the library, the local theatre, and so forth.

11) One last one, become a more intentional parent. I referenced Simplicity Parenting: Using the Extraordinary Power of Less to Raise Calmer, Happier, and More Secure Kids a couple of times already. This is my bible for creating stronger, better relationships with my kids.

If I had to sum this all up, I would say that I need to be more active and more engaged in life. I think that’s an excellent goal for the coming year and the coming decade.

Today has been very strange for me in that I’ve felt lighter and happier in spirit than I have in a long, long time. Maybe the old decade really was just too much for me and I needed a new one to shed the depression and unhappiness of the old and develop a new attitude.

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The Things They Don’t Tell You . . .

It’s now been over a month since Katie’s surgery. Her scar is fading to that pinkish stage where you know it’s a scar, but it’s not as vivid and bloody as it used to look. She’s acting very much like herself. She has one more clearing check with her neurosurgeon and then she’s free for a year. So, it seems like a good time to talk about the things they don’t tell you about surgery for trigonocephaly. Now, I don’t know how many of these are idiosyncratic to Katie and how many are things that every child would go through, but these are the things no one warned us about.

1) No matter how carefully you plan, something is bound to mess you up the day before the surgery. In our case, it was the fact that Katie hadn’t slept in her pack-n-play without the bassinet before. She had no idea how to go to sleep in it and in a strange room, to boot. I spent a lot of time walking and trying to calm her before she, literally, fell asleep on me.

2) You will very likely have to hand your screaming child to someone you’ve never even met. Now, realistically, I knew this was likely to happen, but I think it would be nice if nurses at least introduced themselves before holding their arms out for a child who is clearly clinging to mom for all she is worth.

3) You will very likely not recognize your baby when she comes out of the recovery room headed for the ICU. Katie had a full head of hair and a pointy forehead the last time I saw her. She was completely bald and smooth headed when she came out. Had she not had her turtle with her, I wouldn’t have known it was her. I’m embarrassed to admit that, but there it is.

4) There will come a point when someone hands you a bag, you look down and realize that you’re holding your daughter’s entire head of hair in your hand. No one will think less of you if you vomit shortly thereafter.

5) Your child will not be alert or even know you’re there for the first 24 hours post-surgery. As the nurse told us, she was fine; she was stable, go get sleep, you’re going to need it. I didn’t really believe her, but we left, got sleep, and then didn’t sleep again for a week. She was right.

6) Your child will have a drain in his/her head that looks somewhat Klingon-esque. For the first two days post-op, the drain snaked across the length of Katie’s head and it gave her a ridge right on top. I was afraid to ask questions, but I should have. I would have been relieved to know that it was just the tube for the drain and not a permanent feature of her head. So, the lesson here — ask questions, lots of them.

7) No matter how prepared you think you are for the swelling, you’re not prepared for it. When the eyes are swollen shut, bruised looking, and her whole head seems to weigh more than her body, you will feel utterly helpless. You are helpless. The only things you can do are talk until you are hoarse, and be a human teddy bear when she’s ready for one.

8) No one knows your child better than you do. Do not let well-meaning nurses convince you of things that you know are not true for your specific child. We could have spared Katie some significant anguish if we had held fast.

9) When you can pick your child up, you will likely not be able to put her down again. Katie refused to be set down once we could pick her up. No amount of anything would calm her except being held by mom or dad.

10) They will tell you to bring solids for your child. You likely won’t need them. Katie didn’t eat solid food until her second or third day home. Your child will likely lose weight in the hospital. This is why they want them healthy and heavy when they come in. Don’t worry, the appetite will come back.

11) Your child will not roll over, sit up, stand, laugh, or crawl for several days post op. I don’t know what creates the skill deficit, and I don’t know if it is true for every single child who has this surgery, but Katie was rendered virtually helpless for almost a week. In the hospital this is not as noticeable as it is once you return home. Once home, Katie could not roll over on her own, sit up on her own, or anything else. She was frustrated, upset, and in need of constant reassurance.

12) Even if you don’t believe in attachment parenting, even if you’ve never had a baby carrier, you will need one once you are home. Katie was in her Ergo practically non-stop for four days. I have never been more grateful to a company in my life than I am to Ergo. If you’re in the market for a good baby carrier, check them out. You simply can’t go wrong with one and it’s invaluable when the baby will NOT be put down. *

13) No matter how well you’ve prepared the siblings, they are not ready for this. We had talked and talked with Ben about the surgery. Explained what would happen to Katie. Discussed how careful he would need to be with her post-surgery. And still, the look on his face when he came running in to see his favorite sister (also, his only sister) is burned into my brain. I will never forget the look of stark terror. It shattered my heart.

14) Zip up sleepers are your very best friend in the whole world. Once you see your baby’s head, you will not want to pull ANYTHING over it. No matter what.

15) The glue they use to attach steri-strips should be used for space shuttle repair. It sticks far better than anything NASA uses. And it will tear a strip from your heart when the doctor has to remove those strips.

16) About a month out, the worst will be over. The hair will be coming back. Your baby will have faith that not every stranger is out to hurt her, and she will trust you again, but it takes time and that time is heart rending.

edited to add: You will need to buy some pajamas that are tops and bottoms and bring socks with you for the baby. Once out of surgery, they get very, very cold; socks and the leggings part of the pajamas keep them warmer.
* I paid full price a year ago for my Ergo baby carrier. I did receive some little bag things from them as a thank you for a testimonial I wrote for them based on our experience with the Ergo after Katie’s surgery. Otherwise, there’s no relationship here and I make NOTHING from tell you that hands down, the best baby carrier there is.

How Can I Help?

The four most difficult words in the English language to respond to. I should know. People have been asking me for the better part of a year how they can help and it’s still impossibly hard for me to answer this, but I can offer some ideas for helping someone who is in a similar situation, for example, Anissa Mayhew (see the button to the right, click on it, and you can make a paypal donation).

There are a million and one things that we do to care for our families and our households that we don’t even consider until we’re unable to perform them. Immediate things that can be done while she’s in the hospital people seem to be on: gift cards for fast food restaurants, arranging for care for her kids so that her husband doesn’t have to worry about that and can focus on her, offering assistance in picking folks up from airports or other places and delivering them where they need to be.

But once the immediacy of the situation is over and she’s on the road to recovery, there are still tons of things that we can do to help and that, if we can, we should do to help. The things that cause the most stress are the day to day living activities that can drain a person of energy. So, research things like grocery delivery in her area, meal preparation services in her area, maid-type services in her area. There are online options like Alice.com that could be used to order and deliver basic supplies that we often forget but people always need (toilet paper, toothpaste, paper towels, etc., etc., etc).

Meal preparation services cannot be underestimated in their usefulness. Our friends at Baby Toolkit gave us a gift certificate to our local meal preparation place Dinner Done!. We’d never considered that the worst part of cooking is having to do the preparation, but once we were in over our heads, we found that having meals we could just pull from the freezer and cook was the most wonderful gift. A quick search of the Atlanta area and I found The Dinner A’Fare which appears to be similar to Dinner Done! The great thing about these is that they will do everything for you AND deliver the food to the recipient, so it can take a great deal of stress off of her family during this incredibly difficult time and during the even more difficult time of recovery.

All of the day-to-day management tasks, laundry, dishes, and so forth can also be a serious drain on the caregiver and should be considered as things that people can “do” to help. Whether you help fund someone to come in and assist or if you are in the area, go over and fold laundry and make tea (a phrase suggested by a friend of mine last year; the best thing you can do is not really visit, but visit to help out).

This situation requires long term planning and strategic vision when it comes to how can I help. Right now, everyone is in shock and wants to do something RIGHTNOW. But remember, she’s not looking at a recovery that is a matter of days or even weeks. This is a long road she’s starting on and it will be some time before all of the things that she usually does will be done by her.

There’s also the reality that there are going to be things that need to be done for her. In that respect taking cues from the family is the best bet. If they have a home church, trying to coordinate with the church might be an effective strategy.

The thing is it is very hard when you’re the family involved to say what you need. It feels petty to say, I need help with the laundry or I need help taking care of the kids’ after school schedules or I don’t have the energy by the end of the day to cook dinner or even, I can’t face cooking breakfast in the morning. But these are the real things that drain the strength away from someone who is working on recovering and these are the things that we can be thinking about as Anissa moves forward in her journey.

I’ve only had “incidental contact” with Anissa through other people. I know who she is. I know what she’s about, but I hadn’t gotten to know her yet because of my own energy limits and the time that I don’t have because I’m still trying to recover from my own near death experience.

Linda at Sundry Mourning inspired this post with a comment about trending on Twitter. People want to feel like they’re doing something, I think, and creating the trend, getting the star to tweet to Anissa feels like something is being accomplished. We’re helpless; we’re not family, and yet we are. The Internet creates unusual relationships, but when we get down to the nitty-gritty details of life, that’s where we can all roll up our sleeves and pitch in. I hope this helps not only figuring out how to help Anissa, but also how to help the next person whose life spins out of control, because it will happen again and again — it’s the nature of life. And, when you have an army at your disposal, as does Anissa, you want to try to harness that power and make something good come from something awful. I hope this helps.

And on with the show . . .

After much wrangling and discussion we now have a new set of surgeons and, more importantly, a surgery date. Along with this surgery date, we have a number of other things that we have to do prior to Katie’s surgery.

First, she will have a blood draw for blood typing as soon as I can arrange it. This is to determine initially whether P is compatible so he can do a directed donation if he is. This is the preference for the cranio-facial surgeon. The neurosurgeon indicated that he didn’t care one way or the other.

About a week before the surgery, she will have a pre-op appointment with the cranio-facial surgeon. We will go back over the surgery procedure and what it will entail. This shouldn’t be surprising in any way since we’ve been over all of this so many times.

Next up, Katie has a pre-op physical with Dr. D. I’m quite certain neither of them are looking forward to it. There is a one page form that he will fill out that we will hand carry to the hospital on the day of the surgery. We’re also going to squeeze in Ben’s 4 year old well kid exam. Because we’re homeschooling him, he can delay his shot for a year, which I think is a good thing.

After that, things will ramp up considerably. The day before the surgery we will be dropping the girls off at their vet’s office. Because we will be erratically available, it makes the most sense to get them somewhere that they can be fed and cared for consistently. With Sam’s issues, it’s unfair to ask someone to care for her who isn’t experienced with her sorts of problems. They have a large space for her and that will work. I need to iron a few details out with the office manager regarding how we want to do a couple of things, but that can be done sooner or later.

We are still working on Ben’s care during this. We’re hopeful that will be sorted out in the next day or so. Whatever plan we come up with for him will likely involve getting him settled, at least for a couple of days, with someone who can take care of him during the most difficult parts of Katie’s surgery experience.

After all of the others are settled, we will be taking Katie to the hospital for pre-op lab work. They’ll test her six ways from Sunday and make sure they have blood that is compatible with her (assuming that P’s is not compatible, we will be using the blood bank). We’ll then move into wait mode until the following morning.

Katie is allowed to drink formula until midnight. After midnight, she can have Pedialyte (clear) until 4:30a. After 4:30a, she is not allowed to have anything.

We are to report to the hospital at 5:30a. Presumably, there will be some time with Katie while they’re getting her prepped for surgery. At some point, her head will be shaved, but I don’t know if they plan to do that while we’re with her or not. I know she will have IVs, etc., inserted during this time as well.

She is scheduled for surgery at 7:30a. This could be delayed if there are more pressing situations, but she should go that day if not at that time. Of course, it will be much, much harder to explain to an 11 month old that she can’t eat than it was to explain it to me. I’m not clear about the length of time this surgery will take, but hopefully she’ll be through surgery by sometime in the early afternoon. She will spend at least one night in the PICU because of the nature of the surgery. We have had estimates of everything from three days to seven days as the amount of time that she will likely spend in the hospital. It really depends on her. We’re praying that she recovers quickly and feels well enough to go home quickly.

We know that post-op she is going swell a great deal and that her eyes will be swollen shut for at least a couple of days. I think I’m prepared for this, but I’m not sure. I understand that she’s going to be very frightened and disoriented. I suspect she will also be very clingy and want to be held as much as possible to be reassured that she’s okay and that she doesn’t have to be scared.

We’re currently planning to be in the hospital in shifts, switching off which one of us is with her. The major issue here is that I have work. Unfortunately, school doesn’t stop, so I will be teaching throughout this. Should be interesting at any rate. Fortunately, we’ve found a place to stay that has wireless/ethernet and the hospital also has wireless. This should be workable.

Once Katie is home, she will be kept fairly isolated from others to avoid infection until she gets an all clear from her doctors. This likely means that her birthday party will be postponed, but not canceled. It will likely have implications for Ben’s Halloween, but we’re working on that to see if we can keep from losing the experience for him even if his sister can’t go, too.

Katie will have her first post-op appointment approximately two weeks after the initial surgery. We’ll find out then what they think and what else she may need to do with respect to this. There is a possibility that she will need a second surgery when she is either five or six, but that can’t be determined at this point. We have to see what happens with the bone as she ages.

There are other things: no immunizations for awhile before or after the surgery. Nothing but Tylenol for two weeks prior to the surgery (so we do have a solution if she starts teething again), and she has to avoid illness. This means we’re pretty much living under quarantine for the forseeable future. She needs this surgery and she needs it to go off without a hitch, so this is where we are.

We’re nervous; we’re worried; we’re scared. We have faith and we are praying that she will be okay and that this is a one time deal for her. If you’re looking for something to do for us, please, please pray for a successful outcome for her.

30 Things About My Invisible Illness You May Not Know

1. The illness I live with is: cough variant asthma, chronic hypertension, chronic anxiety, and PTSD (from Katie’s delivery)
2. I was diagnosed with it in the year: 2002 with the first three, the last was late 2008
3. But I had symptoms since: childhood for the asthma. Since college for the anxiety
4. The biggest adjustment I’ve had to make is: shifting from teaching in person to teaching online.
5. Most people assume: that I can do anything and everything because Jerome Bettis played football and Jackie Joyner-Kersee was an amazing athlete.
6. The hardest part about mornings are: remembering to take my medications with the hustle of children and dogs.
7. My favorite medical TV show is: Diagnosis, Murder.
8. A gadget I couldn’t live without is: my nebulizer
9. The hardest part about nights are: getting to sleep. I’m always afraid of waking up in the throes of an asthma attack. It’s the scariest feeling.
10. Each day I take _16_ as needed pills & vitamins. (No comments, please) plus two puffs of advair and albuterol as needed.
11. Regarding alternative treatments I: have not really found any that are viable for me.
12. If I had to choose between an invisible illness or visible I would choose: I don’t think I would change for something more visible. I just wish I could make people understand that there are things you just shouldn’t do around me
13. Regarding working and career: I miss the fact that I don’t see my students in person. I miss teaching books that I love. I miss going to conferences. I haven’t been since Colorado Springs. I spent the whole thing wandering around wheezing.
14. People would be surprised to know: how much I hate leaving my house and being exposed to triggers. I have my asthma under good control as long as I don’t have a lot of exposure.
15. The hardest thing to accept about my new reality has been: how hard it is to do things that I consider normal. I can’t even weed my garden because it stirs up too much pollen and makes it impossibly hard to breathe.
16. Something I never thought I could do with my illness that I did was: travel to a school graduation last year. The last time I did extended travel, I got really sick, so I was worried that this, with all the people in enclosed spaces, was going to do a lot of damage, but it didn’t.
17. The commercials about my illness: make me sad. I can’t do anything and everything and the commercials make it hard for people to understand that.
18. Something I really miss doing since I was diagnosed is: being spontaneous. Everything has to be planned and organized. I have to remember medication whenever I go anywhere.
19. It was really hard to have to give up: being places like church. The enclosed space, lots of people thing is like a breeding ground for illness for me.
20. A new hobby I have taken up since my diagnosis is: I started knitting. It helps me calm down and keep track of my breathing. Particularly good for the anxiety portion of the program.
21. If I could have one day of feeling normal again I would: go to the movies. I haven’t been able to sit in a movie theatre in years. I start wheezing and I have to leave.
22. My illness has taught me: that patience is important. I might not be having a good breathing day today, but tomorrow might be better. I might not be be so stressed or so easily triggered.
23. Want to know a secret? One thing people say that gets under my skin is: You don’t really have asthma. Or, my other favorite, you use asthma as an excuse not to do things.
24. But I love it when people: are considerate and remember that things like perfume trigger me.
25. My favorite motto, scripture, quote that gets me through tough times is: Just keep swimming. (Dory from Finding Nemo.
26. When someone is diagnosed I’d like to tell them: It’s not the end of the world, but it will change your world and the way that you view it.
27. Something that has surprised me about living with an illness is: how much my perspective changed. I always thought that I was good at empathy, but I’ve discovered I wasn’t nearly as good at it as I thought I was.
28. The nicest thing someone did for me when I wasn’t feeling well was: bring things for the baby. After the delivery, I couldn’t do anything and the people who helped in that first two week period really made things so much better. They honestly have no idea how much.
29. I’m involved with Invisible Illness Week because: I don’t look sick when you look at me, but my body knows differently. I want people to know that you just don’t know who might have what by looking at them.
30. The fact that you read this list makes me feel: like you care. Thanks for taking the time :).