Even though three quarters of the human members of the household were sick for Christmas we had a really good day. There are a number of reasons for this, but I’m betting that getting to stay in pajamas and take naps whenever we wanted was a big part of it. Judicious use of Motrin probably didn’t hurt either. So, what were the ten best gifts this Christmas?

Well:

1) Sony 50mm f/1.8 SAM DT Lens for Sony Alpha Digital SLR Cameras

; This lens is probably my favorite gift. I need to work with it more when I’m not sick, but I love that it gives me far better portraits of my kids than I was getting with the regular shooting lens that I use. I’m hoping that it will work for the girls, too .

2) LeapFrog Chat and Count Phone
Katie received this phone and has gotten hours of fun out of it so far. She seems to think it’s the greatest thing in the whole, wide world. She loves to push the buttons and listening to it make the noises.

3) Fisher Price Little People – Busy Day Home
She also received this house and, again, loves spending all of her time playing with it. I think these two presents, alone, would have made her Christmas and this is what we need to keep in mind in the future. Multiple presents and lots of presents aren’t necessary. I think we need to really work to limit the presents to three.

4) ThinkFun Tipover

Ben loves ALL ThinkFun games. He thinks they’re really cool and he really likes solving the puzzles. This one is a little different from his other games because it’s three dimensional and requires him to think in ways that I don’t think he’s tried before. But, we set it up for him once, he watched how the pieces could move and then he was off and running. He’s done the majority of the beginner cards already. I’m just praying they come up with more cards for this game before he burns through all of them.

5) ThinkFun Rush Hour
One of the best gifts we gave was ThinkFun’s Rush Hour to one of Ben and Katie’s friends. The kids love this game and with all the extension cards, it will keep them busy for a long, long time. My son is just starting to use this one — he had the Jr version, but he’s pretty much solved all the cards with that, so he’s moving up.

6) North American Bear Company Rosy Cheeks Baby Blonde Boy

One thing that Ben specifically asked for was a baby doll that was a boy, like him. Finding a boy baby doll turned out to be far more challenging than I would have thought. In large part because he wanted one that looked like Manhattan Toy Baby Stella Doll like his sister received. This doll is an excellent option for a little boy who wants to practice parenting on a stuffed baby. Frank has already become an important member of our household and been is very proud to show him off to people.

7) Getting sick. I know it sounds insane, but not having to run around on Christmas Eve or Christmas Day — or prep for guests who were coming here was strangely liberating. I don’t know that we would advocate getting sick as a good idea for next year, but it’s a good idea to remember that there’s more to the season than running all over the place.

Sam. My old dog is 11 3/4s. She’ll be twelve in March. At that point she will have passed her expected life span by two years. Could this have been her last Christmas? I don’t know. If it was, the fact that we were all together, she didn’t have to stress out at all, and she got to help unwrap a couple of presents? That pretty much defines her perfect holiday. It really does.

9) Wii Music
I’m telling you after hearing tales of all the people who received “gifts” of drums or other instruments, I cannot tell you how thankful I am that one very thoughtful friend got this for Ben instead. He has jammed with trumpets, saxaphones, and an electric guitar. He’s thrilled that he gets to try so many different instruments, and I’m thrilled that there’s an off switch. Talk about a perfect musical present. Yeah, I know, it’s not Rock Band and I do think that would be cool at some point, but for now, this is pitched at his level. The songs aren’t super annoying and he’s having a blast.

10) Katie. Though listed last, she is, without doubt, our best gift this holiday. She is healthy. Her head is healing well. Her scar is slowly disappearing as her hair grows in. She looks more like a baby and less like a patient. It’s wonderful. She’s a happy, healthy little girl. She’s a little behind, developmentally, at the moment, but it’s impossible to be worried because she has time to make up and skill deficits that she “gained” through the surgical process.

I know it’s a weird top ten, but it’s our top ten and our life .

I wish I could say that I haven’t been playing the unfortunate drowning of a two year old over in my head, but I can’t. I am thankful, though, that I can’t make myself feel self-righteous and say that would never happen to me. Of course it could. I live in Florida. There are pools and large bodies of water everywhere. My personal fear of drowning is so huge that I have resisted, mightily, taking my son to the beach. He’s four. He’s lived here his whole life and he’s never been. We’ve promised a trip to the beach as a you’re a big boy thing when he fully transitions to underwear. I’m not pressuring him at all.

Here’s the deal, drownings can happen to any parent regardless of how vigilant you are, and to act as if you are immune or you watch your kids better than everyone else is nothing more than wishful thinking. A kid’s job is to try to escape his/her parents’ watchful eye, and most succeed at some points or another whether we admit it or not. We also have to take calculated risks with our kids in order for them to be able to survive on their own later. As an example, my four year old earned the right as a four year old to play in our backyard without Mom sitting out with him while he does it. Our yard has an eight foot fence all around it and he is reasonably safe, but yeah, he could fall off of his “play ground” and break something. I hope that doesn’t happen, but if I was outside with him, I couldn’t necessarily prevent him from falling unless I literally climbed everything with him. That’s foolish.

I also feel that it is ridiculous to suggest that it was negligent to ask her eleven year old son to take the two year old son inside. I had full babysitting charge of my sister by the time I was ten years old. As in, my parents would go out to dinner or to a party or whatever, and I would stay home and watch my sister for them. I was paid the amazing sum of 25 cents an hour, so you know I got rich doing this. I had a fully thriving babysitting business in my neighborhood by the time I was eleven. There is absolutely nothing wrong with asking an older child to watch a younger child for a few minutes — or so we’ve been reassured by the thousands of Duggar defenders out there.

What I’m honestly worried about, more than the mother here, is the eleven year old. He was asked to take his brother inside and that implies keeping an eye on him until mom was finished taking care of the animals. To me, this doesn’t constitute an unreasonable request. I have animals who require daily care and attention. If I had an eleven year old child, I wouldn’t hesitate to ask that child to watch a younger sibling so that I could complete the care requirements for the animals that live in our house. Heck, in our house, the four year old is solely responsible for feeding the younger dog. She’s still alive, by the way, in case anyone is wondering .

With everyone swarming and calling for the mother’s head, etc., etc., etc., has anyone really stopped and thought about the effect those words might have on her older son? Because, thinking like anyone would in this case, if his mother was negligent in the court of public opinion, surely he was, too. If I were that kid, I would be thinking that I must be responsible for my brother’s death because I didn’t keep him safe until Mom came in. And that truly worries me. It was an accident. It could have happened to anyone . . . ANYONE.

That it happened to an eleven year old and a woman who was taking care of chickens is a tragedy and shouldn’t result in the criticism that I’ve been seeing. It makes me so sad.

And look, you can say it still makes her negligent, but then you have to look at all the near misses and call those parents negligent, too. It’s an unfortunate fact of life that children sometimes die. Sometimes the circumstances could be prevented and sometimes they can’t.

I just wish people would stop Monday morning quarterbacking the situation and understand that there but for the grace of God goes 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.

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.

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.

since my beautiful baby, Katie, was born. She’s still beautiful. Even sporting a haircut that would make a Marine (or a career Army guy) proud. She had a fun day today, I think. Ben sang her every version of the happy birthday song he knows (think, regular, Blue’s Clues version, Trout Fishing in America version, Imagination Movers version . . .at this point I’m thankful there aren’t more versions, or at least that he doesn’t know them). While she was napping Ben and I wrapped her presents. Well, I wrapped them once I wrested them away from Ben, though all three presents received his seal of approval. Then he and I made cupcakes. Our friend over at Overflowing Brain suggested a pile of icing on a small piece of cake to see if Katie would accept that. Miss Katie played with the frosting and that was about it, but we have cute pictures of her fussing about frosting on her hands, so that’s cool.

She loves her Baby Einstein Count and Compose Piano. She was thrilled when she figured out that pressing the buttons makes music. She’s big into the head bobbing, baby dancing thing at the moment. The doll was not as big of a hit, but she’s a bit young, maybe. Ben, however, adores it. He was busy all afternoon until bed time, feeding her doll, changing her doll’s diapers, and so forth. I wonder why it never occurred to me that he might like a doll of his own. Sigh. Well, there’s the option of Sam’s practice baby if he really wants one. Sam certainly doesn’t need it anymore (think babyproofing a dog — eh, I’ll add it to the list of things I want to blog about).

I think, for a one year old, it was about the best birthday one could hope to have. She will be having a party later with godparents, grandparents, and assorted friends, but that’s more of a thank you for supporting us this year than a true Katie is one party, though there will definitely be some of that, too.

And yet . . . all day I had a combination of happiness and sadness. I can’t believe it’s been a year. I can’t believe how much ground I still need to regain and it’s been a year already. I still can’t drive much past the interstate near our house. I haven’t been able to drive myself to my parents’ house in over a year. I fight bouts of dizziness that have nothing to do with my hair color (blonde, for those who haven’t ever met me); I get worn out easily. I feel like I’ve been flattened a million times over. I have less strength in my left arm than I should have and it is super pain sensitive (that would be the one where the IV infiltrated and left me with a pint of blood where tissue and stuff should be). My concentration is still weak. I have serious bouts of depression and anxiety. So intense that I can barely breathe. It’s just unreal to me that a year could go by and though I am miles ahead of where I was at this time last year, I still have miles to go before I get back to where I was on even November 16, 2008, and trust me when I say that wasn’t exactly the best place my body and health have ever been.

And even as I write this and think about what I have to do and where I have to go, I can’t help but think of Anissa Mayhew tonight and think about the journey she’s embarking on. Her road will be different from mine, but no less fraught with irritations, disappointments, and struggles. She has a fabulous support system and I hope, I hope that she gets the chance to be as grateful to hers as I am to mine.

So, to those of you who came and stayed with Ben, or who brought us things when we needed them, or who flew in to help my mom, or knitted hats for Katie to give to the hospital that took such outstanding care of her while her mommy couldn’t, we say thank you. And if you’re reading this and you want to help another young mother who is in a truly devastating situation, please go here: Help for Anissa and do what you can.

I will write in more detail about Katie’s surgery in an upcoming post, but today, I just want to check in so folks know I’m alive and that we’re maintaining. I wouldn’t say we’re thriving, but we’re not going under, so I count it as a win.

We owe a massive debt of gratitude to the folks behind Baby Toolkit for their absolutely lifesaving gift of Dinner Done!. Not having to worry about food shopping, prepping, or really cleaning up after has been such a blessing and a gift. I strongly recommend searching out similar services in your area and putting their phone number on speed dial. When someone is in a really bad place, this is a gift that can make a HUGE difference in their quality of life as they go through whatever their struggle is.

Katie is doing well, but having a lot of difficulty sleeping. I think part of it is fear, since the last time she went to sleep she woke up to a great deal of pain, but part of it may be residual effects of the anesthesia and the intubation. I know it took me a few weeks to work through the additional air in my system after she was born last year. The only way she will sleep is in her swing and only after she has been held and swayed for a while. P thinks we’re spoiling her; I think she’s been through something hugely traumatic and needs some extra nurturing while she recovers.

Her hair would do a Marine proud. It’s roughly an eighth of an inch all over (except at the actual incision site, which is covered in steri-strips). The first day home she couldn’t roll over or crawl, but by day three she was doing both. Yesterday and today, she was cruising from one piece of furniture to another. Took a couple of tumbles. She cried, but cheered right up. My heart stopped, but all is fine.

She’s eating like a champ and has gained back almost everything she lost post-surgery (she went in at 18 lbs; came out about 16.5 lbs and is now almost back to 18 lbs). This is why they were so adamant that she be strong and healthy, and gain weight prior to surgery. Makes sense now.

Ben has dealt with all of this reasonably well. He was very frightened when he came in the first day. He came running over, very excited, but saw Katie’s head and stopped cold. By yesterday, when my mother came to visit, he explained to his Nana that she “cannot touch Katie’s head” and was reasonably protective of her. He’s saying some things we’ve not heard him say before, but nothing that’s really out of order for a four year old. Although, yesterday, calling Katie “stupid Katie” got him sent to his room to cool off.

I’m ended up turning over the classes I was teaching after a very long weekend of very little sleep. So, I am not working until next week. Well, some course prep, but not much else (except some holdover course design issues, that are in the process of being resolved). So, we’ll spend the next few days off doing things that need doing. Planning for November and December homeschooling. Making new charts for Ben. He likes his routines on charts where he can see them, so I oblige. I have some holiday planning/birthday planning to do.

Katie has her follow up appointment on Monday, where hopefully we can get clarity on when she can start being around people a bit more. We have been in virtual seclusion for over a month now, and we’ll have to decide how much exposure is acceptable and whether we need vaccines for flu and H1N1 or not. I likely can’t have them, but can the rest of them? We don’t know. So you know, I believe strongly in vaccination as it’s a means of protecting people like me who cannot take them — so it’s a wee bit self-serving.

In any event, we’re here. We’re hanging in there. I’ll talk more about the surgery and the immediate following time soon. I still need to process my feelings and thoughts on it a bit more.

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.

my daughter was born. At this point, she was out and they had taken her to be weighed, cleaned up, and all that fun stuff while I was being sewn back together. Actually, first they were taking pictures of my uterus (sigh) and then putting me back together. I have “interesting fibroids.” It’s unfortunate that one of those interesting fibroids tore probably not too long after the photographs.

In any event, Miss Katharine is now ten months old. The tag with her name came yesterday. I wear a necklace that has a tag for each of my children, their first names, and their birth dates. I’ve felt weird the last ten months wearing it without Katie’s tag, but now I don’t feel weird anymore and I’m grateful that the tag got here before her surgery date arrives. Katie is doing a lot of things now. She pulls up to a stand, she crawls, she puts everything in her mouth. She can say Mama, Dada, Baba. These are pretty much all the things she needs to say to get her way right now. And trust me, a more demanding Mama you have never heard. If she thinks she’s being ignored or if she thinks that I should be in front of her, “Mama, Mama, Mama, MAMA” until she gets her way.

I’ve joked many times that Katie is lucky she’s our only daughter as her name is the only girl’s name P and I could agree on. Had Ben been a girl, Katie would have been in big trouble. However, he wasn’t and his name is special for its own reasons, as is Katie’s. Ben’s middle name is Alexander. When my mother called our Aunt Joyce and told her Ben’s full name, my aunt’s response was, “That was Marion’s middle name, too.” Well, yeah, I knew that. I named Ben after Uncle Marion, but I just couldn’t bring myself to use Uncle Marion’s first name. I believe he would have understood. I hope that Ben will be like Uncle Marion — a nicer, more pleasant person, I don’t think I can imagine. He was as generous with his time as I hope to be someday. He was devoted to his mother (let’s hope Ben gets that trait, for sure), and he adored his wife. I loved my Uncle Marion very much and I do miss him. Ironically, and really, I didn’t realize it at the time, we also named Ben after the two male characters in my favorite book as a child, The Crystal Tree. The two boys we’re introduced to in the book are Benjamin and Alexander and they become fast friends. So, perhaps a bit literary as well.

And yes, this is Katie’s post, but I needed to preface a discussion of Katie’s name with that so that you’d see I have a habit of choosing names that have both intentional and accidental significance. In Katie’s case, both of her names have significance to me. I suspect that it is going to come as something of a surprise to someone who sometimes reads this blog to find out that my daughter is named after her, but she is. My sister has a friend named Katherine who I have known since they were both about eight years old. I quite liked Katherine and really admired her determination to be who she wanted to be and her willingness to try new and different things while trying to find herself. I think she grew into an amazing young woman who I am proud still to know. I had decided around her mid-twenties if I ever had a daughter I’d want her to have that same strength, that same fearlessness that I see in my sister’s friend and, after some discussion with P, we agreed that a daughter of ours would bear that name. Admittedly, it’s spelled differently because I’m also a huge Katharine Hepburn fan and it worked for us. Again, ironically, it turns out that the slightly different spelling of my daughter’s name is the same as the spelling for the mother of the lead character in Ellen Emerson White’s White House series of books (it begins with The President’s Daughter.)

Katie’s middle name is for my grandmother, my father’s mother. She was my rock for most of my growing up years and into my young adulthood. It was a severe body blow when she died and I didn’t think I would ever get over it. I don’t know if I’ve “gotten over it” yet, but I don’t find myself sobbing for no apparent reason the way that I used to, and I was able to watch football this past weekend without getting overly melancholy, which was a major accomplishment. But Marie also connects Katie to her other great-grandmother, Mary Margaret, her great Aunt MaryAnn, her Grandma Maria, and her Great-Aunt Marie and a cousin, Mary, too. All of those women were strong. They were fighters. And that’s who I want my daughter to be.

If I hadn’t survived her delivery, P might have been able to explain parts of the reasons for her name when she was older, but he wouldn’t have understood or been able to explain all of the reasons. I had meant to write them down, but I didn’t get around to it. Now I have. Not that I think I’m going anywhere, but all of the deaths of the past year have reminded me, forcefully, that we don’t know how long we’re here and we shouldn’t take for granted that our children will know the stories unless we tell the stories.

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 .

This is not a political issue. This is not a party issue. This is a human issue. Every one of us, insured or uninsured is one major illness away from a catastrophe. No matter how well insured you think you are or how well off you think you are, one major illness could wipe you out. No person should have to go bankrupt in order to preserve his or her life.

I’ve stayed quiet on this for as long as I think is rational, but I can’t stay quiet any longer. Consider this. My insurance company covered the birth of our daughter. They didn’t balk at the extra expenses of more exams because the pregnancy was high risk, but they did refuse to cover the high risk specialist, though they did cover the ultrasounds that he did every month (go figure that one out; we’ll pay for the test, but not for the guy who reads it). They covered the immediate birth of my daughter, no sweat. They attempted to argue every single charge related to my near-fatal complications.

They refused to pay for the second anesthesia on the 17th because it wasn’t “medically necessary” for the purposes of giving birth. It was medically necessary, however, to save my life. That, apparently, was secondary. They argued about the number of units of blood. They argued about the amount of fluid I was given. They argued with the tests run to make sure my kidneys were functioning (a common complication after the surgery I had), and on, and on, and on.

This same insurance company feels I should stop taking the asthma drug that controls my asthma except during extreme situations, and take something that is “similar” — it’s not the same pair of drugs and it doesn’t work the same, and my doctor doesn’t believe we’ll have the same results, but my insurance company argues (and sends me letters monthly) suggesting that it is in my best interests to switch. They believe that I should have no more than 4 migraines in a month and so limit my medication on that front to four pills.

I get that people don’t want the government controlling their health care, but, honestly, your doctor isn’t controlling it now. Your insurance company is and they don’t care about you, your health, or what’s best for you. They care about what’s best for their bottom lines. And that’s no way to care for patients.

I have incredibly weird reactions to drugs. For example, I am severely allergic to Naproxen. Like, throat swelling, can’t breathe, nearly died, allergic. My insurance company doesn’t care about that and frequently tries to insist that the medication that I can take for migraines should be substituted with one that contained Naproxen. So, I pay more in order to stay alive because the only drug I can take is not on their preferred list.

Or, if you want another example, take my daughter. While her life is not threatened by her condition, her eyesight and normal development is. Because of all the screwing around on the part of the insurance company, we are now assured this surgery won’t take place before October 1. Because it won’t, we are now going to be out $4000 plus 20% rather than $3000 plus 20%. It’s going to be hard to absorb that hit, but we can. And the worst of it is that they reset the policy on October 1, but the calculations of our out of pocket expenses gets reset on January 1. It works to their benefit, not ours. This is the result of letting private industry regulate our health care.

Or, you want to argue quality of care? Okay, I can do that, too. My daughter had an outstanding surgeon. One we felt extremely comfortable with and were really happy with having do the surgery. But, because our insurance company won’t cover her, we can’t afford to use her. And remember, even though I needed I high risk specialist for both of my pregnancies, neither insurance company covered that cost, so we had to. We’re fortunate that we could afford to do that. What if we couldn’t afford it? Then what would have happened?

Add to that what I’m seeing with my mother- and father-in-law, both of whom have been hospitalized for nearly a month. A conservative estimate of my mother-in-law’s care? $300,000 to $1 million. My father-in-law’s care will likely be somewhere in the neighborhood of $200,000. They have no insurance and no money. We certainly can’t afford to pay for that (nor are we legally responsible to pay it). So, who pays it? I don’t know. I do know that they will end up bankrupt. I know that my father-in-law, who is a World War II veteran was told at the VA that there’s no help for him there at all.

Finally, P and I lived uninsured for the first five years of our marriage. It was extremely scary and not something I would ever want to do again. But insurance doesn’t fix the fear or save us because insurance isn’t actually there to benefit us. They bet on us. If we’re well, we’re a good risk, but if you get ill or develop a chronic illness, health insurance works against you in every way that it can.

We need a system that protects the people of this country and puts the health and welfare of the people above the cost. We need our doctors to be doctors and not be dictated to by people who read spreadsheets, but who have never set foot in a medical school class. We need a system that is not broken and that allows everyone to receive care pre-existing condition or not without fear of losing their homes, hopes, and dreams.

We need health care reform and we need it now.