This may not be what you've been waiting for...

Yes, I realize it has been almost two years since I last posted.  I don't know what else to say, except...to those who may have missed my posts... sorry. And to those who enjoyed the lengthy break...you're welcome.

Last you all heard, I was in Haiti with my sons. Here is a photo of us with our Haitian friends.

Well, we made it home...so that's a good thing. Then I finished up my degree in August of 2012.

Then a whole bunch of other stuff happened that I can't remember. Then I decided to walk through the Notre Dame Commencement Ceremony (again) this May. Here is a photo of me with  my cool, young, hipster friends on graduation day. I am wearing the "Stole of Gratitude". It's a real thing--look it up. Frankly, Dave McKeon was so damn grateful to get me off the tuition plan that he should have been wearing a dozen of them:

Then a whole bunch of other stuff happened that I can't remember. Then we went to Ecuador this summer on the coolest of trips (our trip will be very special fodder for another blog on another day, but for all of you deadbeats who have not yet done it--donate to Andean Health right now, Ok? Here is the link: http://www.andeanhealth.org/take-action/donate/  I mean it. Donate now, please) And admit it, you are all super impressed at just how many links and photos I can now upload to this blog. I wasn't sleeping during my 20 month hiatus. I was upgrading my blogging skills...not really, I was sleeping)

Here is a picture of us in Ecuador. (I know you all probably saw this on the Facebook, but I still really like it, because it looks like we are fit and sporty--we are not fit and sporty):

Consider yourselves officially caught up.  And now for the meat of the blog--warning--it's not super funny or happy or joyful or short...(that really makes you want to keep reading now, doesn't it?) but because many of my most stalwart blog supporters may be able to relate to this topic or at least weigh in, I am posting this anyway.

For the past twenty three years, I have smugly, arrogantly and blithely taken my children's health for granted. Sure, they had the usual stuff, ear tubes, accidents (Annie got hit by a car in 7th grade--super scary--but quick recovery), tonsils, strep, Pete's broken "tape it to a buddy" finger,  etc.  What an unmitigated gift those years have been.  I mean this utterly and sincerely.  And I don't mean to be overly dramatic, or histrionic or anything else, as I fully recognize there are millions of families who have a WAY rougher go than we do, but dealing with an undiagnosed sick kid, even the world's least complaining, kind hearted, happy go lucky sick kid, is just all consuming. And it effects every part of your world.

For the past several weeks, we have been wholly, totally, to the exclusion of all other things, consumed with trying to diagnose and cure the crazy disease Nate developed while we were in Ecuador (I do not think this disease actually came from Ecuador, but that is when the symptoms started and no one can really pin point exactly what our boy has, so we can't rule Ecuador out either)

A not so quick synopsis: On the Thursday afternoon when we were in Ecuador, (July 25th to be exact) Nate told me he was having trouble raising his arms above his head--I teased him about having "John McCain disease" and told him to take some motrin and shake it off.  We had spent the day rafting for several hours to the Pacific Ocean, which truly was even cooler than it sounds--(and I swear to you--we were really freakishly good at the rafting thing, especially Annie McKeon. I know.  I was really surprised, too), so I thought that Nate's arm issue was just over exertion from the awesome paddling job he and Annie led in the prow of our raft.  For the next few days, Nate continued to have joint pain--ankles, knees, shoulders, etc, but he didn't complain at all (I got this info out of him much later, during one of our million trips to physicians when I was trying to align his symptoms to a time line). He was a total trooper (and a bit of an Aleve addict). For the first few days we were home, Nate seemed ok--stiff and sore, but could move around with the help of his good friend Aleve.  By Thursday of that week he could barely move, and at one point as he drove through McDonalds late at night, he could not reach up to get the food from the drive thru and the woman had to throw the food in his car--good thing he did not order a 49 cent cone (which are very tasty, by the way, and such a value).  He finally confessed to me how much pain he was in and how little mobility he had, so on Friday morning (early August) I took him to the pediatrician.  They ran some tests and his liver counts were super high but no one could tell us why or what exactly was wrong with him.   His joint pain kept getting worse and migrating from one joint to another, and several joints at a time (from "John McCain disease" to "FDR disease" and back).

Needless to say, I was not super interested in the whole "wait and see" approach, as I saw my incredibly active son deteriorating before my eyes.  And I knew that he was supposed to be heading off to college in a few weeks, and while I really enjoyed watching Movies on Demand with him every night on the family room sofa, we needed some answers. We went to Froedert the next week and saw the entire infectious disease team (who told me that I basically f'ed up everything I could possibly f up in Ecuador--"Really??  You drank the hot milk?? What were you thinking? You hiked in the jungle? You were in a river??" It just went on and on inferring that I might as well have injected my kid with a syringe full of Ecuadorean poison) .  However, nothing popped on the infectious disease tests and meanwhile, Nate could not open his jaw wide enough to eat a sandwich.  It was just painful to watch.  We bounced back and forth between rheumatology and infectious disease for about another ten days, watching Nate's sed rate and CRP rates climb (indicating inflammation in the body, but not telling us where and what) and getting lapped by all the old ladies leaving the hospital lab. And of course, looming ahead was the supposed start of his freshman year of college. We had less than a week to try to diagnose and cure whatever ailed the boy.

Of course, that did not happen.  We scrambled like crazy the week before Nate was to leave for ND and saw several doctors, all with a different idea on how to treat him.  We heard everything from rheumatic fever, to Lyme's disease, to Tick Borne relapsing fever, to reactive arthritis to rheumatoid arthritis to untreated strep to never to be known or diagnosed freaky ass virus....We decided on a bazooka approach of three heavy duty antibiotics with a steroid chaser and, then took off for Notre Dame.  Before we left, two doctors specifically told me not to send him, as they felt he was too sick.  But in all honesty, I really couldn't tell him after all the work he had done to get there, that he couldn't start his freshman year at Notre Dame and he was super determined to make it work.  (Dave McKeon was freaking out, not because he was afraid that Nate wouldn't make it, but because he was afraid that if he left after a few days, we would  not get our tuition money back)

Things did not go well.  Nate was getting sicker and we were not really prepared for the enormity of his lack of mobility on a college campus.  What seemed kind of manageable at home became really, really difficult when the bathroom was way down the hall and food services was in a totally separate building.  --not to mention classes all over a very large campus.  We had ordered him an electric scooter and warned his rector and academic advisor of his disability, but we were really unprepared. Remember, Nate could not lift his arms above his shoulders, move his hips to walk at a normal pace, or open his mouth wide enough to eat a burger.  At times he couldn't even turn his head. Freshman move in is stressful enough for a healthy kid, but for a kid who has to ride a scooter, can't move his arms, can't stay up past nine, needs to take a nap every day, and who is in constant pain, it was pretty difficult. I unpacked his room over two days, tried to get him organized, but really  had my doubts that he would be staying.

We hit a real low point on the Saturday night of move in weekend and were prepared to throw in the towel and just bring Nate home. I even put a panicky Sunday morning 7am call into our doctor.  She reassured me that he would be feeling worse before getting better, so we were right on track.  For the next two days, tho all the other parents left the University, we stayed on and put together a plan for Nate.  Notre Dame was tremendous.  They worked with us and him--everyone from his rector, to Health Services to his academic advisor to the phys ed department (yeah, you have to take Phys Ed your freshman year at Notre Dame...and even pass a swim test--which Nate could not do--I know FDR could swim, not sure about John McCain--Dave was all for him giving it a try, but his freshman advisor thought otherwise) was terrific.  And it reminded us just how special the Notre Dame community really is.

For the first few days/weeks, things were really dicey.  And frankly, we were just so awkward at making it work, that I think we made things worse.  Managing the ramps, elevators, distance, timing of meds, sleep, school and appointments was beyond our skill set.  I'm not kidding.  And Nate was trying to push himself more than he should have. and he kept running over the back of people's legs with the scooter, AND he was terrible at telling the truth about how much pain he was in or how limited he really was.  When the doctor at ND first saw him, before he had gone over Nate's file, he was like "Oh, we see a lot of kids who feel poorly....you look pretty good to me"  When Nate went back in a few days for  what has now become his weekly appointment (blood work, etc), the doctor actually said: "looking at your blood work, you should be crying on the floor right now--you are either a really happy and amazing kid, or you need some serious counseling because you are in total denial about your pain and how sick you are"  He encouraged Nate to come talk to him regularly, because I think he was worried that Nate would have a break down. (shoot, the one standing on the edge of breakdown or possible divorce is me) But Nate, being Nate, never gets down, or discouraged.  Sure, he wants to be back to normal, and would kill right now to be able to run, play basketball or work out, but he's actually making the best of things and has been using that scooter to pick up girls, cut the line for football tickets and provide campus tours with his friends attached to the back on skateboards.

Nate has been at school for a month now.  He's making progress and has actually been off the scooter except for far distances for almost a week.  He still can't move his arms above his head or run, or shoot a basketball or do yoga, apparently (because Nate can't take the regular ND freshman gym, he's in some special class called "contemporary topics" and they did yoga today--very contemporary, and Nate said he was dying. I'm  no yogi, but I am pretty sure raising your arms above your head and bending  your knees are fundamental in the yoga world. Shit, he might as well have tried the swim test)...but he is managing much better.  We are not really sure if he is getting better, or just learning how to live with his limitations. (Chris swears Nate has just learned to manage and live with the pain)  However, last week for the first time since this whole thing started, his sed rate and CRP have gone down.  They are still way above normal, but we are hoping things are moving in a positive direction.

So, here is the whole take away from this experience for me (besides becoming an expert in tick borne illnesses): I have the utmost, humbling and undying respect for those of you who have chronically ill children. How do you even do it? I've been dealing with this for eight weeks and can barely keep moving. And I am really sorry that I have not been empathetic or compassionate enough.  I'm sorry for all my whiny ass complaining about superficial kid stuff and my big fat ass.  (which is still quite large by the way--Nate on the other hand is dropping weight like crazy, and of course, so is manorexic Dave...) And I probably owe you all a case of wine and a month full of dinners.  And I can never understand for one second what your days consist of but I've got to ask: How can you stand to see your kid in pain? How can you keep going to physicians who, though well intentioned, really don't know what to do next? or who discount the test results that don't fit into their protocol? Do you ever sleep? Does the worry ever go away? Do you ever get off the internet, and stop scaring yourself to death?? And if so, when does this day arrive? Do you ever get over having that pit in your stomach when your kid can't do something they really love? (Nate had to watch his first ND home game as a student in the handicapped section on his scooter with all the old alumni--and his brother Chris--for some reason, this broke my heart) Or when other kids kind of avoid them because of their disability? (Trust me, even the nice kids at Notre Dame were giving Nate a bit of a berth while they were all scrambling to make friends the first few weeks of school. Surprisingly, being attached to a rascal scooter, when you are not a varsity athlete or have a visible injury is not a big draw)

All indicators show that Nate will eventually get better (just not sure when....or how....or why). And he's holding his own at Notre Dame. He is happy, making friends, and doing just fine with the easiest schedule in the history of Notre Dame.  (we totally had to redo his schedule and he is taking classes based solely on location, time of day and number of varsity athletes on the roster) And yet, I still pour over his medical records, I still call him every single day to see what his numbers are, I still make Annie and Chris touch base with him daily to ensure he is not lying to me, underplaying his pain.  I still worry incessantly, I still lay awake at night trying to figure out what else I should be doing (and we will be going to the Mayo Clinic over his fall break if this thing doesn't resolve itself soon) and I still wonder if there was something I've missed.

For those of you who deal with issues way graver than this daily, for those of you who have been dealing with sick kids for years and decades--I'm sorry and I am moved beyond words at how well you all handle your days.  I applaud your graciousness, I am in awe of your good humor, I am humbled by your actions and how you live your lives.  I am even more impressed if you are still married, because I was pretty sure our kids would be celebrating two Christmases for a while there...(stress does NOT bring out the best in our relationship....neither did Dave's 6 hour round of golf on Notre Dame's Warren Course while I was trying to navigate Nate's orientation....). You have my  undying admiration and my utmost respect.  And for what it's worth, this blog is for you.

Now, today's (this year's) Top Ten:

1. 49 cent cones--they are great, especially if you can move your arms
2. The 1818 catazine (catalogue/magazine from Brooks Brothers)--they have really upped their game
3. The shamrock button down from Brooks Brothers--I have it in navy and in green. A total Notre Dame game staple.
4. The Henley dress from J. McGlaughlin--it's pretty much changed my life. I'm not kidding.
5. Kevin Moyer and the gentlemen of St. Eds for sticking up for Nate when he was getting heckled in the stands at the Notre Dame game for sitting down in the student section.  Glad no blood was shed.
6. Drunk History--the best show on TV, hands down.  I know it is messed up, but it makes me laugh so, so hard.. "This guy...This guy is an awkward, ape legged, ape armed..."
7. Andean Health and Development--they are doing some really high level work in Ecuador that is making an enormous impact.
8. I Give it a Year--a totally great little movie on demand, that Nate and I watched not once, but twice during our long motionless nights.  "The sound track of my marriage"...
9. Skinny Pop pop corn--only 39 calories a serving--except if you eat the whole bag...
10. Nate McKeon--total trooper, medical mystery, scooter hooter.

Now that I'm back on the blog again, I promise to post up regularly.  thanks for hanging in there.