Switzerland

I married into a family who thinks traveling is like breathing:  It's just done.  I, the ever-easy-going person that I am, play along for the sake of family harmony.  So when it was decided a girls trip to Switzerland was happening in October, and I was asked to go along, I did my sister-in-law duty and went along.  You know, for family harmony and all.

Leeda's friend, Gunilla, lives in France, just outside of Geneva.  We all flew in at different times (Leeda went a day early, Kajja was flying in from a work trip in Nepal) and once we were together, Gunilla drove us to Montreux.  Montreux is a resort town on Lake Geneva (Lac Lemans to locals), about an hour and a half from Geneva.  We stayed at a great B&B there and wore ourselves out with the walking, eating and shopping.  We also took a train up to the peak of Rochers de Naye, one of the mountains above Montreux.

Rochers de Naye is a lovely place with lovely views and the plan is to go back for my 40th birthday (if not sooner so my knees can handle the hiking) to stay in a yurt.  We walked around a bit on the trails and met a man who had hiked to the top of the mountain.  He was also very lovely (*wink*) and we invited him to partake of some eau-de-vie (fruit brandy) we had gotten at the train station gift shop.  One of the things I love about Europe is that you can buy individual shot glasses of brandy at 6700 feet and no one blinks an eye when you pull them out.

So, there we are, on top of a mountain, doing shots with a foreign hiker and taking pictures.  After the hiker went on his way, literally running down the mountain, we decided to do yoga poses.  This decision had nothing at all to do with the fact the brandy we had was 80 proof.  But it was a gorgeous place to do yoga all the same.

We 3 Americans hung around Montreux an extra day and we wanted to try the ultimate Swiss experience:  fondue.  Except fondue isn't as mainstream Swiss as the Americans think it is and there was really only one fondue restaurant close to where we were.  Melting Pot it's not.  The restaurant was very much a tourist trap with a painted cow at the entrance and gnomes all over the place.  Also, it smelled awful.  Leeda said it was a particular kind of sausage so while I was wary, I was going to get over it.  Then we got the menus.  Their house specialty is horse.  I immediately associated the awful smell with cooked horse and got all woozy headed and faint.  I seriously thought I was about to pass out and kind of relayed that to the sisters.  After a little discussion, where it was discussed I'm an overreacting wus, we left.  Kajja was a bit interested in my reaction because she's vegetarian and has somewhat the same reaction to ALL meat.  The only thing I could come up with is this: in the States, we use horses as work companions and most other animals we eat are raised as meat.  Yes, it's a weak argument.  Yes, I eat cow, pig, chicken, fish, etc.  I just couldn't fathom being in a restaurant where the smiling man next to me was happily eating Black Beauty.  I am a hypocrite.

Aside from the horse eating people, I LOVED Switzerland.  It's quaint in a huge European kind of way, everyone speaks English (as does everyone in Europe but the Swiss are nice about speaking it with you) and US dollars are accepted in Geneva.  USD being accepted in Geneva is important when you've run out of Swiss Francs but would like to purchase chocolate and a watch.  

If this were 1978, I would invite you over for drinks and show you a slide show.  As it is, you can pour yourself a glass of wine before viewing:  http://www.flickr.com/photos/21041037@N07/sets/72157625551654656/

Perplexed

Things that perplex me, in no certain order:

• Actors on kids' shows.  Do the hosts on The Sunny Side Up Show really love their job?  What about the actors on The Fresh Beat Band?  I doubt they make a ton of money so there has to be some love, right?  Are they hoping for the next big break?  Did they lose a bet?  I'm intrigued. 
• My children.  I love them.  I love them more than anything in the world.  How do they drive me so crazy?  
• Doctors, their "policies"and how those policies aren't always effective.  Tater and I once waited on a neurologist for over 2 hours.  I had to drive an hour and half home and it was already 4pm, so I decided to leave before Tater ever saw the doctor and you can bet I was determined to never go back.  But Tater's pulmonologist really wants him to see this particular neuro.  The appointment has been made and I received a notice that states:  If you are more than 15 minutes late for your appointment, you will not be seen and the appointment will not be rescheduled.  I'm sure they say this is so they don't get backed up and have to make patients wait.  Ha.  Hahahahaha.  Not funny.     
• How a loving God would pick my child to have the burden of a special needs life.  How a compassionate God would take a sweet little boy named Angus, who had the most gorgeous smile and who dealt with so much in his short life, away from his family.  How a nurturing God would let any sweet child deal with any obstacle.  I don't get it.  I'm reading When Bad Things Happen to Good People by Harold Kushner.  I hope I can find some perspective.
• (full circle here) Is Dr. Scott the Paleontologist the most dynamic paleontologist they could find to host a children's show?  Is dynamic paleontologist an oxymoron?  Dr. Scott is cute, he obviously knows his dinosaurs, but he's lacking a certain je ne sais quois I've come to expect in my children's programming.  

Thanksgiving

We headed to South Carolina for Thanksgiving.  We were able to see Mr. A's extended family and had a wonderful time being with that side of the clan.  We ate dinner at Gigi's house on Thursday and enjoyed being with all 23 of the people there.  My camera stayed in my purse the entire weekend so there is no photographic evidence of the fun had.  The boys are definitely grateful for their cousins, 'Pencer and Lucas, and love them very much.  

We drove home Friday night.  Mr. A insisting on watching the Iron Bowl before we left-wow, way to go Auburn-WAR EAGLE!!- so we didn't leave until it was over and got in very late.  Saturday we got up early and went to Coco and Papa's house where we ate lots of food despite not being hungry at all.  It was the epitome of being a glutton-being full from a late breakfast but getting a plate of food at lunch then repeating that cycle a few hours later when the gathering moved to Grandma and Bill's house.  I am still full.  

I'm now sitting on the couch while the boys are piled up on Mr. A in a chair.  They're all giggling and laughing and saying nonsense words and being happy.  I'm so very, very thankful for my family-my boys, all 3 of them, mean the world to me.  

And so I can look back at this and remember all that I have:

-I'm thankful Mr. A's family has accepted me as one of their own in spite of my inability to filter the things that leave my mouth.  

-I'm thankful my boys have close cousins and that we get to see them fairly often.   

-I'm thankful my parents live close by.

-I'm thankful for my dad who can do literally anything and cooks breakfast for us even though we were late and the kitchen had already been cleaned from the previous breakfast. 

-I'm thankful for my mom who loves her grandkids and literally drives all over tarnation to make sure they are taken care of.  I'm especially grateful for how much she helps me with my kids and jumps in to take over whenever there is a Tater-related medical event.  And for her gardening knowledge.  

-I'm thankful for my sweet nieces and nephews-although one of those nephews is now 15, is no longer baby-sweet but is becoming a man and it blows my mind how fast he has grown up. 

-I'm thankful for my sisters and brother, Mr. A's sisters, all of their spouses and how well we all get along even though we are all so different.  

-I'm thankful for Memaw, Grandma Burns and Grandpa Bill-I'm so lucky to have my grandparents.  

-I'm thankful for Tater's nurse, Pat, who just became a grandmother but loves my kids like they were her first grandchildren.  

-I'm thankful I am able to complain about being full and still have food to consume.  

-I'm thankful for being tired from a family-filled weekend.  

-I'm thankful for my kids.  Kisses from those 2 stinky boys are the most wonderful thing in the world.  

-I'm thankful for my most awesome husband.  He is the best father and he is my best friend.  

Renovations and a Recipe

We are in the midst of some renovations around here.  Hallelujah.  When we bought this house 6 years ago, the first thing we were going to do was paint the exterior.  Mountain homes should not be Colonial Blue, in my humble opinion, and we are not blue house people, anyways.  But then we got a few quotes for someone painting the house and it didn't seem so important anymore.  I have always hated the blue paint but I have enjoyed eating and amenities such as heat and air conditioning more.

Y'all!  My house is no longer blue.  It is Tea Leaf (or olivey-browney-green).  Of course it started raining before the painters could finish the trim and such but the important part is my house is a shade that is found in nature and doesn't scream, "Look AT ME!!"  And because it's raining and the painter is giving us such a good deal on the labor (it helps that he does a lot of work for my dad), we're having him paint the walls in our house that have had flat, white paint on them.  Flat, white paint and 2 little boys do not mix so now we have walls that look nice.  ALSO!  Our roof is one wind storm away from utter destruction so the nice people we pay lots of money to for house insurance are now giving us a little bit of that money back for a new roof.  AND!! Mr. A, who has a coronary even thinking about spending money, has agreed that if we're in for a penny, we're in for a pound.   So I think we're going to get hardwoods downstairs and replace our nasty carpet upstairs.

Y'all, I didn't know all this would make me so happy.  I've always loved this house-now it's going to feel more like me.  And I think we've been kind of dragging our feet on home improvements because we just didn't know what was going to happen in Tater world.  In my crazy mind, home improvements=Tater doing well!  I'm just giddy about the whole deal.  I'll share before and after pics when it's all done but here is a before until then.  It's lovely in blue, it's just not me:

And what better way to celebrate going broke than to share a recipe involving heavy cream and wine?  We just had this for dinner and I had to get up from the table to find bread so I could sop up the sauce.  Mr. A and I were purring, it's so good.  It's by Shirley O. Corriher (a real cook, not one of those skinny twits who doesn't eat their own food) and there should be a pair of elastic-waist pants named after her.  I doubled the sauce and made some egg noodles to put the chicken on.  It is heaven:  http://www.npr.org/templates/story/story.php?storyId=130596892

Classic French Chicken

Makes 2 servings.

2 medium boneless, skinless chicken breasts

Salt and white pepper

2 tablespoons canola oil or very mild olive oil

1/2 cup chicken stock or chicken stock and dry white wine

4 or 5 sprigs of fresh thyme or 1/2 teaspoon dried thyme

1 bay leaf

1/3 cup heavy cream

Sprinkle chicken breasts with salt and pepper. Place each breast between two pieces of plastic wrap or waxed paper and lightly pound the thick end to make breast more equal in thickness.

Over medium-high heat, heat a 10-inch skillet until the upper edge of the pan feels hot to a quick touch. Remove from the heat; pour in the oil and tilt to run oil over the pan. Return to the heat and immediately place the breasts into the pan with the rib side up. The breasts will sizzle and they will be stuck.

This is a Zen moment. Think happy thoughts. Be at peace with the world. Twiddle your thumbs. Do anything but don't touch the chicken. After about 90 seconds which will seem like an eternity, the breasts will lightly brown and release all by themselves. Turn each over. Again, they will be stuck. Wait again until they brown and release, and then remove them to a platter.

Pour the stock into the hot pan. Scrape the pan to loosen any stuck-on particles. Add the thyme, and bay leaf. Boil on high heat and reduce until a only few tablespoons remain. Stir in the heavy cream and continue to reduce until the sauce thickens. Remove the bay leaf. Slice each fillet at an angle into 3 pieces. Spoon the sauce over the fillets and serve immediately.

You Knew This One Was Coming...

I just couldn't help it.  I wrote a letter to the editor of our local newspaper.  Hearing political candidate after candidate say they would work to repeal the current Health Care Bill was too much for me.  Tater is on Medicaid.  Our family relies on a social program most people don't know about.  I felt like I needed to say something.  And then was mortified when it was published.   Because then people who don't know me read what I wrote and the editor had to edit my wordiness heavily.  He didn't change the tone or message at all, but man oh man I need to revisit English 101.  Then a mom from Kindergarten emailed me to say she read the letter so now I'm wondering who else in my daily life read it and what they think about it.  oy.  ack.  hide.

I know.  I KNOW.  I have a blog.  People read what I write.  But I can pretend only my friends and family read it.  I'm used to embarrassing myself in front of them.  It's what I do-make others feel great about themselves by showing them what real embarrassment is.  It's my gift to the world.  Now, I've shared my gift with the greater metro area and those damn politicians probably won't ever see it.

Oh well.  In my illogical mind, the best way to combat embarrassment is to open myself up for more.  Following is THE LETTER, published in the Huntsville Times on November 4th:

It has been disconcerting to me to hear several candidates state some version of promising to help repeal the "socialist" health care plan if elected.  Not everyone who benefits from the "socialist programs" is poor, lazy, or unwilling to pay for the benefits they receive.

My son was born with a rare medical condition that will exhaust his portion of the insurance benefits we receive through an employer-based health care plan before he becomes a teenager. Because of his condition, he receives Medicaid through the Alabama Elderly and Disabled Waiver Program as secondary insurance to our primary insurance. We are a middle class family living in a nice community, paying taxes, relying on the health care programs so many candidates want to get rid of. We're not millionaires so we are unable to pay the costs associated with our child's medical care.

Sadly, we are not alone of being in the middle class and having to rely on social health care programs. Many of us work hard to live the American Dream but face the American Nightmare of being caught up in a political game of who is worthy and who is not. As taxpayers, our families are worthy. As voters, our voices are worthy.

Caty B. Stokes

Huntsville

Convalesence

Hello.  What are you up to today?  Me?  I'm trying to get a 3 year-old to stay on the couch so he doesn't rip open the stitches from surgery on Friday.  Said stitches are in an, um, delicate place and while he's aware of them, he no longer feels bad enough to lay around.  We've cut back on the pain meds because he doesn't seem to need them and they make him loopy -but at least he was too drunk to get up when he was on them.  (He looked at Mr. A yesterday and asked "Daddy, why I spinnin'?" Heh!)  I think we may have to pull out some movies Santa was planning to give him for Christmas because the Sunny Side Up Show is no longer cutting it.

Tater has wracked up in the sympathy gift department and is currently playing with: Buzz Lightyear from Wissa, Bumblebee (the Transformer) from LaLa, Iron Man figure from Coco and trucks from us.  He never really remembers much from before or right after surgeries so other than the pain, I'm sure he thinks surgery is kinda like Christmas.

Toser decided that getting fever-vomitting sick 12 hours before Tater's surgery would be great timing.  Last time Tater had surgery, Toser got sick so this seems to be par for the course.  Of course, Coco came through for us again.  She was planning on spending the night at our house Thursday night so she could take Toser to school Friday morning.  When she got here, Toser had already been sick and it was apparent he would not be attending Kindergarten.  She asked if he wanted to stay at home or go to her house; Toser slowly got up from the couch, got his jacket and took his puke bucket out to her car.  I guess even in his sick state, he knew he was much better off at the grandparents'.  Papa had the couch set up for him when he got there and all reports point to him feeling much better and getting his fill of Angry Birds Halloween.

I'm about to head out to my Godson's baptism.  I've never been a godmother before and I have no clue what is expected of me.  I think all I have to do is spoil him and be nicer to him than I am to my own children. Sounds good to me.  Especially since he's so darn cute and I think his parents are pretty cool.

So Much For That

I checked Toser out of school today so he could go vote with me.  Our voting precinct is at the fire station next to his school so he was gone all of 10 minutes.  I sat down with him to show him the ballot and show him how we vote for each candidate.  He started glossing over and soon asked how much longer I was going to be because he didn't want to miss PE.  Thus ended our Civics lesson for today.  I know 5 is young to care about stuff like this but I really thought he would like it.  Heh.  Joke's on me.  (And I'm going to torture him for the next 15 years, embarrassing him by checking him out to vote with me.  Fair is fair.)

Nightcrawlers

My friends, HeatherE and Ouisee, and I walk 3 mornings a week.  We meet before the crack of dawn and it's dark when I leave my house.  Like 75% cacao dark.  I usually bike to Ouisee's house then we walk to meet HeatherE.  I'm kind of a bit creeped about being the only person on the road on my way to Ouisee's (only about 1/2 mile but still).  We have streetlights but they cycle and aren't always on.

One morning last week, it was dark, of course, and I was riding on the main street between my and Ouisee's houses.  As I rode by a side street, a truck/SUV pulled up to the stop sign.  I thought, "Huh.  That's weird.  I never see cars out this early," and pedaled a bit faster.  The truck/SUV pulled out behind me and was going very. slowly.  And its shocks were creaking.  And the streetlight I was going past cycled out.  I turned onto Ouisee's street, a bit freaked, and the truck/SUV followed me!!  I definitely picked up the pace then and was booking it. (In actuality, I probably didn't go much faster but at the time, I felt like I was flying.)  I went around the curve on the approach to Ouisee's house, saw she was in the driveway waiting and screeched in saying, "That truck's following me!"  Ouisee lit out down her driveway towards her house because we Southerners don't run in panic, we light out.  I felt a bit braver having a witness and stopped because I wanted to see/confront whomever was following me.  Ouisee wouldn't have that and hissed at me to "Come on!"  We got closer to her house and ducked behind her van.  I guess we were going to pull out our Mommy Warriors hiding behind the van and we were going to jump the stalker.  I don't know, it just seemed prudent at the time to duck behind the van.  We were waiting for the truck to stop and come kill us when Ouisee heard a thunk.  She turned to me, and said, "Caty, it's the paper lady."

I'll give you a second to stop laughing.  It's okay.  These things just happen.  I read a lot, I watch a lot of trashy TV, I absorb all kinds of details and when the moment's right, I can concoct a Situation.  Apparently, Ouisee is very susceptible to this type of thing and we create quite the team.  Because following the Paper Stalker Situation, there was the "We should run away from the cat" Situation in the same walk- but that was completely HeatherE's fault because she has shorter legs.  And the next day there was "Let's walk in the pitch black in the State Park" Situation which involved us jumping in a ditch and also hightailing it from someone with a flashlight.  Ouisee's mom said we're "the nightcrawlers of Monte Sano."  I don't know if that's a compliment or not.  I picture her saying it with a mixture of love and exasperation.  Regardless, we're totally getting shirts that say, "Nightcrawlers of Monte Sano".

Skip to my Toser

Once upon a time, there was an athletic boy and a nerdy, uncoordinated girl who fell in love.  When their offspring were of an age for these things to matter, it became apparent the eldest offspring fell more on the uncoordinated, nerd side of the family tree.  Eldest Offspring loves sports and can play well, but he has to work a bit harder at it than his brother does.  (Which makes no sense to Nerdy Girl AT ALL seeing the youngest has developmental delays. Youngest's Physical Therapist tried to explain to Nerdy Girl coordination is a mental thing and has more to do with how your brain processes the follow through action rather than the physical which made no sense because, see above: uncoordinated.)

One day, Nerdy Girl was approached by the eldest offspring's PE coach.  PE coach said, "We need to get Eldest Offspring skipping.  He can't do it.  He falls apart and starts crying when it's time to skip in PE.  Instead of timeout for punishments, send him outside to skip."  Nerdy Girl first laughed because, hee! skipping timeouts.  Then Nerdy Girl felt like crying because, um, skipping.

The thing is, Nerdy Girl totally gets it.  Gets how it feels to be the only person unable to really do a physical activity.  Nerdy Girl's OLDER (as in 5 years older-ha) sister used to have that arsenal in her bag of weapons to use against Nerdy Girl.  "Hahahahaha!  Nerdy Girl can't throw/run/walk!"  Until Older Sister realized, "Um, I'm old.  I need to stop making fun of those younger and sprier than I am."

Nerdy Girl feels badly for Eldest Offspring.  Yet, skipping is apparently a life skill that Kindergarteners need and so Eldest Offspring will be forced to do it.  There has been a come to Jesus talk about it and tears ensued.  Now Nerdy Girl has to figure out a way to explain skipping to a 5 year-old.  Hopping on one foot then the other was met with a blank stare and falling to the floor.  Nerdy Girl is guessing skipping timeouts may end up being the way to go.  Skipping as a punishment.  What has this world come to?

The one about snot

Why do you think I try to downplay Nate's stuff?  Seriously, why in the world do I automatically say his snotty nose/coughing is allergies?  Because, what if it isn't?

I am frustrated with myself right now because I may have let his snotty nose go for too long and if it ends up delaying the surgery he is scheduled for in November, I will kick myself.  I'm pretty flexible, I could probably very well kick myself.

He is ALWAYS snotty.  Always.  And he seems to have pretty horrible allergies (inherited from HIS FATHER).  And sometimes it's hard to tell when it's regular snot or not.  His upper airway is collapsed and the thinking is there is no where for normal secretions to go, so they stick around and get bacteria-y and thick.  Antibiotics don't always clear up the snot so I try to err on the side of no antibiotics, what with him being colonized with a drug resistant staph (MRSA) and having developed an allergy to one of the drugs that could help clear that up.  I want to save the drugs for the big stuff.  But as a doctor by training and not by schooling (ha!),  it's sometimes hard for me to tell what's big and what can be attributed to allergies/kennel cough from preschool/living in a house with carpet.

So here we are, 3 weeks out from surgery, Nate is coughing like a 20-year smoker, has a green nose and I'm filled with apprehension and self doubt.  I'm *hoping* it's a trach infection that can be cleared quickly because his trach smelled like stinky feet when I took him off the vent this morning (eww!).  But if it's not, maybe I will learn my lesson and stop being a pansy who doesn't like to involve the people who are paid to take care of him and, I don't know, let them take care of him.  Novel idea, eh?

In the Middle

I’m (we’re) at a very strange place in the whole Nate-has-a-myriad-of issues journey.  It’s not a bad place to be.  I’m very grateful he’s done as well as he as for so long.   The problem is, as it has been from the beginning, he doesn’t fit a mold. I believe not having a mold to fit in has gotten Nate more respect in the medical community had he had a diagnosis from day one.  I believe his doctors have had to rethink things they were taught and hopefully have become better caregivers in the process.  I believe not having a mold has let us have a more positive outlook on his prognosis.  I believe I have worried more needlessly with him not having a mold.  I believe I may have drunk a few more glasses of wine than needed in searching for a place for him (and me, as his number one worrier) to fit.  None of these are inherently bad or good.  They just are.

It’s difficult for me to put this in words but the words are clawing their way to the surface of my mind and I feel as if I need to put them down in order to gain a better perspective.  I find perspective in some strange places.  In the fog we often see on the Mountain.  In the way I react to wrong supply orders (and the dumb redneck who answers the phone at the Medical Supply Company; if there are 2 things that bother me, they are DUMB and REDNECK).  In the way Mr. A and I treat each other.   In having conversations with friends.   Every little thing can help me see the where and what and why of it all. 

I can’t function unless I can make sense of my life and world and make it all work in a peaceful way.  I end up justifying many things in looking for peace.  For example, I can justify denial as a valid way to process things.  For the most part, if it’s not conducive to a happy life to worry about something, I don’t.  I can push things to the back of my mind and let them stay there.  I think it’s more survival mechanism than anything but it’s denial all the same.  I honestly see no point in worrying about something that I can’t change, don’t have control over or shouldn’t have control over/can change.  Worrying about how long Nate will have (fill in the blank) doesn’t change the outcome.  Not to say I don’t validate any worries I do have or that I don’t worry at all, but I have become very clinical in deciding whether something is worth my time and worry.  It’s a very complex system I have, is what I’m saying. 

Now, back to that strange place.  Where does Nate fit in the whole typical vs. delayed/medically fragile vs. healthy child world?  He doesn’t fit a mold.  Several children with delays and medical issues don’t fit a mold but most of the time they have more significant delays and issues than Nate.  And as chief non-worrier about Nate, where do I go for support?  Where people understand without pitying (I hate pity!), or on the flip side where people understand without thinking I have nothing to complain about?     

Nate has a trach, which means we maintain an open airway for him.  An open airway where germs and stuff can invade his body.  He can’t clear normal secretions on his own and must be suctioned or wear a device that helps him clear the secretions.  He sleeps on a vent and gets fed through a tube in his stomach.  He’s had several surgeries and will have more.  He is delayed developmentally and goes to therapy once a week.

Okay, so he has the trach but he’s fairly healthy.  He’s constantly snotty-sick but that’s kind of normal with his issues.  He’s had multiple surgeries but he has always recovered and there will be an eventual end to the procedures.  He sleeps on a vent but hopefully, one day, won’t need it any longer.  He gets fed through a tube in his stomach… okay, on that one I have no window of light-he’s fed through a tube in his stomach.  But he doesn’t have a problem with his formula and he’s growing.  He’s delayed developmentally but to the casual bystander, not that much.  He looks and acts like a typical 3 year-old.  He goes to therapy once a week but now he only has speech every week and physical and occupational therapies once a month.  He used to see 3 therapists every week and seeing only 1 or 2 now seems so simple.

I have a wonderful support group in my friends and family.   It’s so very comforting knowing if I ever need anything, there are people I can call at any time and they will help me or find someone who can.  Mr. A, Bo, Nate and I would not have survived this without these people and I will never be able to repay the kindness we have been shown.  But they don’t understand the medical side of things, nor should they.  It’s all very confusing and if I were to say, “I’ve been wondering if Nate’s suprastomal collapse is due to the trach or his underlying hypotonia,” I don’t expect anyone to get it.   

The other group of people I wouldn’t be able to have survived this long without, my friends from the Trach Forum, aka Life Support for trach parents, they get the medical.  I don’t have to explain what suprastomal collapse is or explain that the device that helps him manage his secretions is a Passy-Muir valve or what it does.  They live this life of suctioning, doctors’ appointments, surgeries, dealing with DMEs who seemingly never get an order correct, and having a desk drawer dedicated to EoBs.  And while they are ALWAYS supportive, ALWAYS understanding, I often feel as if I shouldn’t complain to them.  Most of these people deal with so much more than I ever will.  A lot of their kids will never get rid of their trachs.  A lot of their kids are significantly delayed and will never fit in with a group of their peers.  Several of these parents will be taking care of their children when their children are adults whereas I plan to kick Nate out of the house when he’s 18 (not really, but really).   Too many of these parents will lose their children to the diseases causing their medical issues. 

I feel like I’m in some middle land of the journey with Nate.  He’s just medically fragile enough that he’s not normal and he’s just normal enough that he’s not medically fragile.  There is no mold for him and there’s no mold for us as parents.  I’m not sad or upset about this but maybe perplexed?  Intrigued? Are there other parents like us?  I know there have to be but where are they?  Should I seek them out?  Do they want to be found?  Are they like me and pretend they fit in but don’t really?

I’ve stopped blogging, in part, because of this middle land. I guess I’ve used the blog in the past to fill the space (not void) between the 2 worlds, but I don’t like the way I’ve used it.  Reading back through posts, I’ve found myself being preachy in trying to explain medical stuff and whiny in the complaining.   I sound like a total bore who needs to learn how to use punctuation!  It’s extremely embarrassing the assumptions I’ve made in thinking people want to hear about certain things and not about others.  It’s cringe-inducing to realize I’ve been so condescending in some posts, talking about how I do things and making it sound like that’s the best way.  And it’s very eye-opening to realize how much I’ve struggled when I’ve thought I’ve had it together. 

I’ve gotten off Facebook.  You know, the time-suck of a social networking tool that I spent way too much time on.  The one that made me think I was keeping up with my friends but when I think about it, how is knowing that someone is painting their toenails keeping up with them?   Maybe with my extra time I can get back to blogging and stop feeling like I’m in between 2 worlds.  I hope that I can be less preachy and more sharing.  That I can find my bearings with positive words and valid thoughts.  

What Do You Do With a Scurvy Pirate?

Make them walk the plank!  I love Backyardigans and have missed them.  We have been without cable for a year and got it back yesterday.  We will have it long enough to watch the Tour de France and World Cup then will have it disconnected, again.  Or at least that's the plan.  I see reinstalling cable as a slippery slope we may not be able to climb up again.  It's so easy to become a TV bum and it's fun to boot.  We'll see how strong we are at the end of the summer. ;)

So.  Let's see.  I went to Napa with Heather and Christy, had lots of fun, drank too much wine and paid a lot of money to ship wine home that I just found in a local liquor store.  Next time I go to Wine Country I will take the liquor store's number so I can check to make sure they don't carry what I want to ship and I will not rely on the winery rep who insists, "You'll never find that in Alabama."  Apparently we're not as backwoods as you thought we were, Napa! 

We only did what we wanted to, went to bed at 8pm CA time and woke up way too early.  It was a great trip and in spite of me being preoccupied with Tater's surgery, Heather having to prepare for a huge presentation for work and Christy having motion sickness, I think we actually enjoyed ourselves.  I'm not sure as I haven't truly caught up on sleep yet, but I think we did. 

Tater's urology surgery went well.  The doctor said it was a complicated process but it was successful and Tater will not have to wear a patch to receive hormones during puberty (you're welcome, son). 

He also had a flexible bronchoscopy while he was sedated and it was the news from that procedure which threw us for a loop.  He's had secretions in his right lung that may be the cause of his constant snottiness and quick-to-bottom-out sicknesses.  We're treating that with a 3-week course of antibiotics. 

His upper airway has also done something that can happen when it is not being used, having been circumnavigated by a trach for 2 years;  it has collapsed.  What this means for any planned trach removal (decannulation), we're not sure.  It does mean we will eventually have to get more doctors on board and I'm just conflicted about it all.  The go-to guys in this field are in Cincinnati, and I would hate being so close to THE guys and not using them.  But going to Cinci means entering a new medical system that will want to run it's own tests.  It means new doctors wanting to research Tater's underlying condition.  It is difficult to introduce a child with a chronic, undiagnosed condition to experts on this level and expect to get out with a simple, "this is when the surgery will be." 

Do we really want to go down that road again?  I flirt with wanting to find more answers about his condition all the time and continually come back to no.  We have always said if he regresses, then we will pursue answers.  Is this considered a regression or is it a side-effect?  Is there a difference?  Can I make your head spin anymore? 

I know it will all work out the way it's supposed to and I have no control over any of it but I'm still a little ticked off and not very accepting of the (seemingly) inevitable at the moment.  He will most likely still have the trach removed but it may be a little farther off than anticipated and may require a couple of surgeries.  Or he could still be on track to have it removed soon.  We don't know.  One would think we would be used to the uncertainty by now but I think if you have any amount of hope, uncertainty will always upend you. 

He's happy and I'm reminding myself that's ALL that matters.  All that matters.  Let me dwell on that a bit.  Mr. A and I are heading off this weekend for an anniversary trip.  Leeda and her boys are coming to take care of our boys and we're going to sit in a hotel all weekend and not do anything but eat and sleep.  I cannot think of anything I would rather do.

Promises, Promises

Wow.  I can't even keep a promise to myself.  Last time I updated the blog I thought, "Well, this isn't bad.  If I only update once a week, that's better than nothing and it won't take long."  Yeah.  The problem is, I'm not one to mince words and if I sit down to update, I get up an hour later and an hour updating my blog seems excessive (although I can happily browse random photos on Facebook and that doesn't seem excessive at all.  Hush.)

RANDOM ALERT: Want to know one my most favorite things in the world?  I love this on The Electric Company:     I sing it to myself all the time.  It cracks me up! 

So, we have a few things going on this weekend.  Tomorrow, I am jumping on a plane and heading to San Francisco with 2 of my besties, Heather and Christy.  Heather has this job that makes her travel all over the East Coast and keeps us from hardly ever seeing her.  BUT!  She accumulates airline miles like you wouldn't believe.  And because she loves me and Christy sooooo much, she got us tickets to California for a girls weekend in SanFran and Napa for some wine tasting.  I am very much looking forward to catching up with these 2 wonderful women and drinking lots of wine.  (This trip also brought to you by the letters A, C and W.  Without Mr. A holding down the fort and Coco and Wissa stepping in for school pick-up, I wouldn't be able to go.)

When I get back Monday night, Mr. A and Tater are picking me up from the airport and we will all head to Birmingham for the second stage of Tater's urological surgery on Tuesday.  It's a day surgery and we should be able to come home Tuesday night.  Fingers crossed everything goes well and things are progressing as they should in that area. 

How, you ask, is it that I scheduled Tater's surgery for the day after I get back from a wino girls' trip?  It's because mah orgazational skilz are outstanding, y'all.  Just because I write things down doesn't mean a darn thing and I can double book like a rookie.  Oh well.  It will work out.  But if you see me next week and I'm a stressed crying mess with a hangover, please to ignore me.

If You Don't Tell Him, I Won't.

Monday-Tater is still sick.  Lungs junky with a "crackly" sound and needing the vent off and on all day.  Today-sick?  who's sick?  Not Tater.  His lungs sound clear and he's back to his normal nasal congestion.  huh?!  This kid loves him some roller coasters in the health area but I'm finding I'm too old to enjoy the ride.  Dude.  I'm tired.  And in need of a stiff drink or 10. 

Meanwhile, Mr. A is in on A MISSION to find the cause of our A/C troubles.  You know, so we don't spend all of our meager tax refund in one fell swoop with the heat pump guy.  I just heard the heat pump "pop" so I'm betting there is some cussing going on about now.  That and Toser is following him around in a T-shirt, underwear and tennis shoes with no socks.  I'm trying really hard not to laugh. 

I'll leave you with this fun bit of a night in the life of us: We live on a "Mountain" (1600 feet, so really a hill) and our property backs up to a State Park with over 2000 acres of property. There are dozens of hiking and biking trails and the weather was especially nice today so the visitors were out in full force. Apparently someone got lost this afternoon. Not usually a big deal because if you head downhill in any direction, you'll hit residential areas; you'll be far off course, but you can get help. The protocol for when someone gets lost is to position police cars and fire trucks in the various hiking parking lots around the "Mountain" and they sound their sirens at 5 minute intervals so whomever is lost can orient themselves. The main parking lot is maybe 150 yards from our back deck so we get a full view of the goings on. People with flashlights in the trees and the sirens every.freakin.five.minutes. No one has ever been seriously lost so we can afford the luxury of getting very frustrated with the proceedings.  We really are good people, we just like our quiet backyard to be quiet. I'm sure the lost person would be very appreciative of our conversation.  Plus, whomever decides to go off-trail 30 minutes before dark thinking it won't be a big deal OBVIOUSLY needs to be talked about. 

Happy Easter!

Wow, guys.  The difference a day makes!  Tater is definitely improved and is actually off his vent at the moment, playing a version of soccer bowling (kicking a soccer ball towards bowling pins-he totally made this up himself).  We're about to head to my grandmother's house for Easter Dinner.  Yes, Dinner.  It's Sunday Dinner and Easter Dinner, even though it's lunch.  Drives Mr. A crazy I call it Dinner but I am Southern through and through and that's what we do.  (I can see Kera and Mrs. Moore shaking their heads with me)

Last night I was wondering why this particular event has thrown me for such a loop.  I'm usually the upbeat one and crash with pity after an event has passed so it's been strange to do the whole, "Woe is us," thing during the craziness.  As I was falling asleep, it hit me: I have the luxury of falling apart while it's happening because I KNOW it's going to get better.  Before, I never knew IF it would get better and would need to keep my wits about me for the long haul.  This time, while stressful, was just a blip in the road in this whole journey.  Just a stressful tire change and we're back on our way. 

Thanks for indulging my pity party.  Tater was the sick one and I was the one needing the support.  While my other son was sick away from home and my mother was having to pull out survival skills she hasn't needed in a while.  Ugh.  And thank you for your thoughts and prayers.  The sugar booger is on the mend.  I think we're still on track for the minor surgery on Friday and then on to Manny's house.  Thanks for everything, guys. 

Coco wins

I thought I had a bad day yesterday...

It seems Toser has a stomach bug.  The only day he went to school last week was Thursday and I guess he got it there.  He's been at CocoPop's since then and we were supposed to get him back last night but Coco called to say she was keeping him because he had been vomitting.  On her.  In Papa's truck.  I think Coco had the worse day.  We struggled here but I never had vomit on me. 

I feel bad that Bo is sick away from home.  I hear he's pretty pitiful.  We were tempted to get him but as Coco says, she would rather take care of only him and not everyone in our family-which would be the case if he infected us.  I see her point.  Of course she's going to get sick because these are the types of things that keep on giving.  ugh. 

Aaaaaannnnnnddddd Ben just came in to say he has a nail in his tire.  I have to laugh because if I didn't, I would be in a corner crying.  I would like for this week to be over, pretty please.

Neverending Pity Party

It's 11:30 am and I feel like it should be 10 pm.  It's been a helluva morning, y'all.  I'll spare you the gorey details but Tater's having some GI issues in addition to his respiratory issues (or they may be causing his respiratory issues since both systems rely on muscles-muscles which are already compromised with Tater's low tone; add illness and you have a perfect storm of stuff).  Interventions were performed and I have a tired, worn out little boy on my hands who passed out from sheer exhaustion.  I am feeling sorry for him and myself and if it weren't for my savior of a neighbor bringing me a nonfatnowhipmocha, I would call this morning a complete bust. 

I hate that Tater suffers like this.  I hate that he was doing so well for so long and now this.  I hate that I'm feeling sorry for myself in addition to him.  This sucks and I think I'm going to crawl back into bed. 

PS-my voicemail is full at home and on my cell.  I don't have the energy to listen/erase anything.  text or email me if you need me.

yeah. that

Remember how I said I hesitate to commit to things because Tater may get sick and then I have to cancel and that would make me feel bad?  Yeah, well, guess what.  Tater's pretty sick right now.  He'll be fine but he has this weird virus/cold thing going on, I had to take him to the ER this morning followed by an osbservation visit to the PICU and he's back on his vent and on medicines he hasn't been on in a while.  :(  So of course I'm having to cancel some things I feel bad about cancelling but I think we have to be prepared for this ickiness to stick around for a while. 

Dude.  I'm bummed.  For Tater.  For me.  For Mr. A who has to deal with both of us.  I'm not bummed for Toser who is currently rockin' a stay at Camp CocoPop where he is having every wish fulfilled.  Who's jealous?  Not me. 

Tater is scheduled for surgery next Friday and I really hope he gets well in time for that.  And I hope he feels better in time for us to go see Manny in South AL in 2 weeks.  I just want him to be better, period.  He's asleep right now and seems comfortable so we're grateful for that.  Off to get some much needed sleep myself.

Is this thing on?

Hello!  How are you?!  Us?  We're great!

Yeah.  Sorry for falling off the face of the earth.  When you have relatives tracking you down on Facebook asking if everything is okay because you haven't updated your blog in umpteen months, I think it's time to let everyone know:  OUR LIFE IS BORING AND NONEVENTFUL AND WE LOVE IT! 

Of course, boring and noneventful for us means no hospital visits for Tater.  He's still got the trach and there's a certain stress with that which never goes away, but he's healthy and that's all we've ever asked for.  He's also almost 3 and has an attitude that goes with a 16 year-old.  Lawdy, lawdy.  Help us. 

He had a sleep study and vent clinic 2 weeks ago and I got to talk extensively with his new plumonologist.  She told me bluntly that she understands the previous reluctance to move forward with Tater but she's not going to let us be in our safe zone forever.  She's ready to push him and get him rid of all his extra stuff.  Everyone previously on his case saw him at his absolute worse (I guess that's what you call almost dying from RSV?) and she's only seen healthy, strong Tater.  She says she thinks we can start weaning him off the vent while he's asleep with eventually getting rid of the trach when he's been sick a couple of times after completely weaning.  Scary and exciting at the same time.  Now if we could only get Tater to sleep without the vent at naps, which is the first step.  He's so used to it and you can tell he's scared to sleep without it.  Poor guy.  I thought it would be hard for me to get rid of the vent.  I never thought he would see it as security as well.

Tater has exploded with vocabulary and physical skills.  He's normal!  He only qualifies for articulation help in speech therapy with the school system.  He loves school and I think putting him in a normal preschool is the best thing we ever could have done for him.  He doesn't know there is anything different about him and he plays with friends, fights over toys and is happy.  I can say my little baby is a boy who has thoughts and wants and expresses those very well.  He loves to play and draw.  He's so sweet and if ever gives me a kiss, he has to give Daddy one, too because fair is fair.  He loves Lady Gaga (don't judge!) and thinks dancing around the living room is the most awesome thing.  Wait.  The most awesome thing is his big brother.  He loves Toser.  Loves when Toser asks him to play Puppy, trucks or just to run around the house.  It's wonderful they have each other. 

Toser.  My wonderful, smart, artistic Toser.  He's so cute and adorable and I want to eat him on a daily basis because he's so sweet and considerate.  And when he smiles, he literally lights up the whole room.  He ended up needing naps reinstated which solved most of the behavioral issues we were having.  Who knew?  Of course I say that and this morning was a bit emotional because he woke up waaaay too early.  But just knowing it's a sleep issue and not a Mommy issue helps me tremendously when it comes to my patience level.  It's so nice to know a good long nap is what he needs and I'm not the most ineffectual parent on the planet. 

Mr. Awesome had injured his hip after years of playing soccer.  He had outpatient surgery to repair a partially torn labrum which means we can't tease him about being old and needing a hip replacement.  He should be back to playing soccer in the fall and the angels will weep with joy because this is a man who needs exercise.  He's not exactly grumpy but I can tell he's not exactly ecstatic either.  He's been working too hard and I've been bribing his friends to kidnap him to take him out for fun.  He's still the most attentive Dad.  I have to remind myself not everyone has it a great as I do in having a husband who is so hands-on with his kids.  I tend to take it for granted. 

I'm the same, opinionated Khaki who gets stressed thinking about making plans because, "OMG.  What if Tater gets sick and I have to cancel and that would be horrible and the worst thing in the world."  I'm getting better but I still hesitate to take on any responsibility outside of our family because, I don't know.  Most people don't see this side of me but it's there and real and very monster-like in it's consuming-ness.  I give off the vibe that everything is wonderful and great and Tater is healthy and everyone expects that we're normal (and prone to run-on sentences).  The reality is until Tater gets rid of his trach, our lives are not normal and I'm going to be a commitment-phobe and tick off people with my reluctance to do things.  I'm happy, though, and isn't that what anyone ever wants?  I love my husband more than anything and I'm discovering I'm a better mom to older kids who can talk and reason rather than the younger babies I love to nibble on but just never can seem to feel confident with.  I'm at a place where everything isn't so gray all the time and I'm just not so manic in my quest to make everything seem better than it is.

Life is good.  I'm about to meet Mr. A for lunch and then I'll pick up the boys from school and we'll come home, take naps, play, eat dinner, take baths, read stories, snuggle, draw "X marks the spot" on backs and say "Night night.  I love you.  See you in the morning."  And tomorrow morning we'll start all over.  I love this life more than I ever thought possible.

I have this friend...

I have this friend who has a 4 year-old son.  "She" really doesn't understand what's wrong with "her" son.  The son has a good life, has all of his basic needs met, has most of his wants met, and he still is very unhappy and hates the world.  Or so it seems to "my friend."

Okay, so it's me.  I just don't understand.  What am I doing wrong?  It's like a day in a manic depressive's life. 

Toser: LIFE IS WONDERFUL, I will stay in my PJs all day!
Me: No, son, today is a school day.  You need to get dressed and eat breakfast. 
Toser: {literally falling on the floor} I don't want to go to school!!  I don't like school!  I want to stay home! 
If I say, "sure, let's stay home today and stay in our PJs," inevitably around 10:00 I tell him to turn the TV off, he gets bored and starts crying because he wants to go to school.  If I force him to go to school, which he loves and does really well in, I feel bad because school isn't mandatory and is very much a luxury for me.

Anything is liable to turn into a meltdown.  His gloves don't fit right, his carrots are touching his meat, he wanted to turn the lights off but Tater did.  I've tried showing him compassion and understanding, I've tried sending him to his room, I've tried taking away privileges, I've tried ignoring him.  It simply doesn't matter.  Meltdowns are an inevitable part of our day and I'm exhausted.  I'm tired of walking on eggshells around a 4 year-old.  I'm tired of making excuses for him.  I'm tired of thinking my standards and expectations are too high.  Is it too much to ask of a 4 year-old to not yell at his brother, his mother, his father, his brother's nurse?  To pick up his toys?  To do something the second or third time I ask/tell him to do it?

The only good thing about this is he only does it at home.  His teacher acts surprised when I ask if he has any behavior issues at school and jokes that Toser's behavior at home is Toser's special gift to me.  But this special gift is neither needed nor asked for and I want to give it back.  I used to think I had good instincts when it came to raising my children and now I'm not so sure. 

He can be such a sweet boy.  He's by no means spoiled OR deprived.  I honestly don't think Tater's health issues have anything to do with it because he's the healthiest he's ever been.  What is wrong with my smart little Toser?  Why is he having such a hard time?  And if he's having a hard time now, what in the world will he be like when he's a teenager? 

5 Bites!!!!!

Christmas was great. The boys had a blast and we spent all of Christmas weekend at my parents' house with my sisters and brother and their families. 18 people slept there on Saturday night and it was wonderful. And crazy. Then there was our annual New Year’s Eve Open House which had a record attendance. I pride myself on having enough food and I ran out of things this year. I make a lot of food so there must have been a lot of people here. That and we still have bags of trash in the garage so I think we can say it was a blowout.

All of the events of the past weeks meant that we neglected working with Tater on his feeding therapy. He’s been doing great in therapy with feeding himself bites and not gagging or reacting too badly so I was worried our little break would set him back. Last night was the first time in a while we attempted anything related to food going into Tater’s mouth and…

I willa shout it from da rooftops, "TATER TOOK 5 BITES!!!!"

Of vanilla pudding and he fed himself! Whatever he does at therapy doesn’t always come home with him. He did steps at therapy weeks before he would try it at home. He’s been taking bites without gagging for ages and he’s been feeding himself pudding for a couple of weeks there as well. But for whatever reason, at home he’s been very reluctant to do anything with soft textures in his mouth.

So when we sat down last night to do it, I was prepared for one of us to end up crying (usually it’s both of us-him because he’s miserable and me because I feel sooo bad for forcing him to do something he very obviously hates). And he just did it. We made a game out of it and he just did it. No tears, very happy, like nothing was ever wrong with eating.

It’s 5 bites and we still have a long road ahead of us, but 5 BITES!!! I am so dang happy.