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.

It’s Been One Year . . .

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.

The Aftermath

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.

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.

10 Months Ago . . .

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.

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 .

We Need Health Care Reform

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.

Playing Possum

I’ve always been reasonably good at this. Pretending to be asleep to avoid something was an easy way out with my parents for a long time. Now, usually, it only postponed whatever I was trying to avoid, but my mother’s feelings about early mornings and housework, particularly on Saturdays, made me master the skill early and quickly. I have to wonder if we were the only family who divided chores up in what were weird, arbitrary fashions on Saturday so that everyone would be “released” sooner. My dad vacuumed. Easy chore, if you ask me. My mother cleaned bathrooms. Thankless chore, in my opinion. This left dusting and, there must have been a fourth thing because I have a sister and I know she had to clean things, but for the life of me, I cannot remember what the fourth thing was. Dusting wasn’t just dusting the furniture and the knick-knacks, it was also for the baseboards. As in, dusting the baseboards. Yes, I spent many years dusting baseboards, and since this was done weekly, it wasn’t a particularly satisfying task as there was never any dust built up to remove.

I still play possum but it’s now to avoid the two males in my life. I usually wake up when P starts the shower in the morning or when he’s getting himself together for the day. It might be the muttering that he does while he’s getting organized, though he’d never admit that. He usually knows I’m awake. I’ll sneak a quick check of my email account, my twitter account, and so forth. The second I hear the gate on Ben’s room swing, though, I ditch the handheld, close my eyes, and pretend to be asleep. Until very recently, Ben would come in, put his face right up next to me, and call MomMom in his best approximation of a quiet voice (read, you could hear him two states away).

About a week ago, this changed. I realized that I was actually falling back asleep and there was no little voice blaring in my ear to wake me up. Today, I stayed awake, though still with eyes closed to find out what happens now. Today, he got up, ran across the house to peek in my room. Once he determined I was asleep. He told his Sheep that MomMom was still asleep, but they needed breakfast. I popped one eye open to see the kitchen light come on, hear the fridge door open, and the sound of him getting a cup of yogurt for himself. He got out his spoon, settled into his chair and ate his yogurt, all the while keeping up a running commentary with Sheep about the day, what he was eating, what he hoped to eat when MomMom woke up, and so on. I listened for a few minutes and was charmed by both his complete confidence that everything was going to go his way and his attempts to be considerate and let MomMom sleep. He tells Sheep: MomMom is sick right now and she needs her rest, so we’ll be very quiet until she wakes up and can play with us. I did “wake up,” we did play, and a good day is being had by all. Well, so long as I keep taking DayQuil and resting anyway.

The Sandwich

And how I wish I was about to write an ode to food. I would love to be writing about food. In fact, I would give anything to be writing about the wonderful pork chops I made or the grilled cheese sandwich my son ate for lunch. Instead, I’m talking about the sandwich generation, of which I am now a card-carrying member.

The saga began last Tuesday. I was on the phone with P and his work cell phone rang. We said goodbye and I went on with my day for about three minutes. Our phone rang and it was P. The other call had been his mother, she was feeling very sick and needed him to take her to the hospital. I did not see P again until Thursday.

His mother is still with us, but she is very ill. Ill enough that her time in the hospital will likely be measured in weeks, not days, and will involve an incredibly risky surgery from which she is not guaranteed to live, but without she is guaranteed to die. So, we’re moving forward toward a surgery date that keeps getting moved as her condition doesn’t deteriorate and her doctor believes we are gaining ground that will be valuable post-surgery. He’s good and I hope that he’s right about this one. A notable fact about P’s family is that his parents do not have health insurance of any kind. Not for want of arguing on our parts, but they do not have it and that is that.

P’s father has not been well for some time. In my eyes, he exhibits all of the signs of a person with Alzheimer’s disease, but because he refuses to see a doctor for any reason, and believes that we are conspiring against him when we suggest he take an aspirin, there has been no diagnosis. P was stretched to the end of his rope by Wednesday night. His father kept wandering off. P could not keep track of him. They went back to his parents’ house to get some sleep and his father kept waking him up wanting to know who he was and what he was doing in the house.

After some discussion, we agreed that hiring home care for his father was a prudent move because, unsurprisingly, P needs to be working and we have obligations to our children, not the least of them to Katie. The home health care lasted less than twelve hours before P’s dad threw them out of his house and called the police.

During the course of the discussion with the officers, P’s dad made it clear that he didn’t want to see P and he didn’t want P on his property, so P had to abide by those wishes.

In the meantime, we discovered some issues with our insurance and Katie’s upcoming surgery. Issues large enough that the surgery was almost completely derailed. Fortunately, we have good friends who were able to recommend another surgeon who is not a problem for our insurance, so we have an appointment with that person on the 2nd of September. Ideally, surgery for trigonocephaly is completed before the 1st birthday. We are just under 3 months from Katie’s first birthday. I’m hoping we can get this done quickly and settled. I hate that we’ve wasted over two months waiting for people to figure out what they want to do only to discover at the last minute that this is simply not going to happen the way that we thought it would.

However, given the way things have turned out, it’s a blessing that her surgery is not a month from now as we had planned. We planned for September 18. In the current circumstances, P’s mother will not be back in her own house and we are not sure whether P will have enough time to take to be in the hospital with Katie were the surgery to happen then. So, moving it a month later, even, would be a huge bonus for us.

But this is what the sandwich is about. We’re caught between our responsibilities to our children and our responsibilities to P’s parents. How do we integrate a woman who needs quiet and rest into a house with a super-active almost four year old (read that to mean LOUD)? How do we find space for her in our three bedroom house? How do I add her care to the demanding schedule that I already have of children, dogs, house, husband, and work (read students)?

I don’t know. I wish I did know, but I don’t. I wish I could say that I’ve handled all of this super gracefully, but in the interests of the integrity I claim to have, I haven’t. I’ve been difficult and frustrated and seriously pissed off about the reasons this situation is coming about. I called my parents and confirmed that they have insurance, long-term care insurance, and every other freaking thing you can think of to keep this insanity from happening twice.

I have reined in my inner pain in the ass to some degree and have not looked at P and said, “See . . . this is why I insisted on two children. No one person should have to deal with all of this essentially by himself.” However, my inner pain in the ass was not as kind about the dishwasher that died (immediately after the death of the garbage disposal), the code violation we were given, and so on. The garbage disposal now works thanks to one of P’s friends. I am remembering all of the handwashing techniques that I learned when I lived in Auburn (the land of no dishwashers, at least in any house I could find). And we were found in compliance with code as of today and we discovered we have a crank in the neighborhood who is apparently calling in violations on everyone they can. It’s truly charming.

Right now, I’m hanging on by my fingernails and hoping that we will pull through this without losing our minds. It’s hard and it’s painful in many ways, particularly for P. I feel for him and hope that he knows how much I admire his strength in facing an impossible set of circumstances and choices. One man cannot be in four places and having to choose and prioritize is hurting him terribly. Having his daughter turn away from him when he came back after almost 72 hours away was incredibly painful for him. She settled back quickly, but that initial reluctance hurt him.

Long days and hard decisions are facing all of us. Pray for us as we go through these challenging times and remember to talk to your parents about their plans, their insurance, and all that stuff. Keep talking and arguing until they do the things that need to be done. It’s important, and it’s responsible.

Today is my birthday . . .

My son has a book that he adores The Birthday Box by Leslie Patricelli. It’s a great story about a little baby (gender undetermined) who is all excited about getting a box for his/her birthday. Inside the box is a puppy. It’s a nice, gentle story and makes birthdays, even not super exciting ones, seem good.

Today, however, is my real, actual birthday. Not that you would know this by anything that’s going on, but it is. And not only is it my birthday, it’s a milestone birthday. Today, I am 40. I am not upset by this or distressed or anything. I don’t feel like I’ve just crossed some imaginary line that means I will never be what I was or anything.

I had big plans for my birthday. After years of not taking my birthday very seriously, I decided that this year I was going to do what I wanted to do. What I wanted to do was go out with some of my friends, minus my children, then take the kids to Safari Nights at our zoo, and finally, go out to dinner with my husband — by ourselves.

Unfortunately, none of that is going to happen. The immediate reasons involve a health crisis for my mother-in-law which has put my husband in some very difficult situations in the last few days.

I’m not upset about it and I’m thankful that I didn’t let myself get too excited about the plan, but I’m honestly not sure how much more we can take as a family without cracking a bit.

I don’t really even have much else to say right now. Just that we’re very stressed and no part of this is easy. Every time we think we’re out of the woods, something else happens. It would be unbelievable if I heard someone telling the story of the last five days, and I just cannot believe that I’m living it.