Living-Deliberately.com

Two days ago I was in the drug store and while I was paying for my stuff the kids were on the nearby toy aisle checking out water guns. I bent down to pick up “the baby” and at his feet lay a crisp, brand new $100 dollar bill.

I scooped it up and looked around. Could we use it? My first thought was that with cash, if you go up to someone and say, “excuse me…did you happen to loose $100?” there is no way to really know for sure if they’d tell the truth. We recently have been very graciously given gifts of support to help us through our time in the hospital and my next thought was that maybe this was some kind of heavenly blessing.

I turned to gather the rest of the kids and when I did so, I saw a clerk crying in the corner. Another clerk was walking nearby with her head down, as if she was looking for something. I felt like heaven had given me a different kind of blessing.

“Excuse me…are you looking for something?” I asked.

She hesitated but then said “yes”.

“Was it money?”

“Yes…we lost something from our cash drawer and we have to pay it ourselves if we can’t find it.”

“Is it this?” I asked, taking out the bill and showing it to her.

What followed was more tears and sighs of relief and thank-yous. I felt soooo good that I knew with confidence that this belonged to them and actually speaking up about it had saved them grief; around here, especially for store-clerk earners, that amount of money is a big deal. I left with a good feeling; a better one than just finding a large bill on the ground and wondering who it really belonged to would have given.

Today in the mail an envelope came. A Random Act of Kindness with the line, I think from the movie pay it Forward, saying, “A Random Act of Kindness is it’s own reward. When you have the opportunity- pay it forward.” The amount inside the card? One hundred dollars. The giver? A dear reader who joins so many of you others, who have expressed encouragement, support, mailed stuffed monkeys, passed me gift cards for coffee, listened to my processing thoughts, prayed for us, sent coloring books and pictures, and overall, have just been there for us in ways I could have never imagined.  A huge THANKS to all, from our family, and most especially Wheaton, who doesn’t feel alone.

And so “pay it forward” we shall. May the circle be unbroken.

I think I may know too many “Sarah’s” because when I first saw this post with the tan minivan photo at the top, I thought of another Sarah…the “SmallWorld” Sarah with a similar van (or maybe that was her old one?). Anyway, I read this STUNNING story with a different Sarah in mind and I was laughing my head off imaging that Sarah in the story…she totally has the moxy to do something like this but probably wouldn’t have taken it so far…..plus, she’s in the middle of homeschooling today.

Anyway, my other friend Sarah, obviously also rich-with-moxy, is the writer of this story. Reminds me of Fried Green Tomatoes, Towanda The Avenger…. may prostitutes and the sleazes who hire them BEWARE. Live Deliberately girlfriend!
And a darn creative blog post too, I may add.

I’m still on the warpath to change the tide around here though I’m tempted at times to just go with the flow and succumb to the madness :-).

I  went to bed  last night after a long night of creative work, discovery of a new pestilence, and woke to the dog chewing my cell phone (and only link out other than email) into shreds.  First order of the day annhilated the creative work I did the night before, kids all hated their breakfast, and dogs ate all the cat food. At this point, I’m non-reactive…just sort of wide-eyed and stunned that momentum can tumble in around me like this sometimes. Which led to….more one liners! So from yesterday:

“This ‘came to pass’ and did not ‘come to stay’ ”

“The only way out is through”

and more:

“What doesn’t kill you makes you stronger.”

“Things always look different in three days.”

“Don’t sweat the small stuff.”

“Roll with the punches”.

Gimme s’more…”hit me with your best shot”

Time for a check in! And he’s smokin’! Cookin’ with gas! On  a roll! (quick, quick… find me s’more cliches for rock-and-roll success!)

Here’s a chart that shows how Ron has done in the various straw polls around the country. Go Ron!!

I took a look at the evidence: I wanted to get out of the hospital…but I didn’t want to go home. I knew what waited there for me was an overwhelming project list and that “the only way out was through” because letting it go was not sustainable. And how. We left, rather abruptly, Friday night and after getting groceries, walked in just before 11pm. The fridge, which can’t hold it’s temperature and leaks water both inside and out, had “peed” rotten veggie water all over the floor. Since no one had been home to clean it up through out the day, the cummulative effect of 3 hot days was all over the green vinyl. The kitchen lighting was burned out. There was a mountain of clean-but-unfolded laundry covering the entire dining room table, Everest Style. That was what I could see from the door, without actually stepping inside yet.

What followed was a room-by-room assult of Things Needing To Be Done. I guess at the top is the room division project that continues to drag on; splitting one long room into two bedrooms divided by closets started in May (April?). This has the entire house in disorder: rooms that already serve many puposes now serve more and the result is chaos, a lack of structure, and disaray. Add to it the parade of “little” fixes that are necessary if we sell in the coming year…only late at night after a long week in a hospital and news that we are still adjusting to, they didn’t seem so “little”.

I had my moment of wanting to drop a match and walk away. I had my cry. I had a few hours of sleep. And then I got to work.

All day Saturday and into the night I worked. Sorting, washing, folding, ripping out the last of the carpet, padding, and tack strips, scrubbing, mopping…in between feeding a ravenous little boy on Steroids, talking on the phone, and ignoring my back injury. Two large van loads of stuff went to the dump and a third went to Goodwill. I stayed home from church, cried some more about missing communion and fellowship, and welcomed home the kids, who immediately went to work with me.

By last night we had a handle on things; the list is still quite long. The oven still doesn’t work, the wall needs building, walls require painting, thresholds and screens need replacing and something will have to be done with that fridge. There’s a stopped up bathroom sink, toilets that need new seals, siding that must be replaced, a broken window… and of course the Mt. Laundry will replenish itself, food must be prepared with care, meds needs to be handed out 3x a day, school for hungry minds, the grass is knee high, the garden swallowed the sidewalk, animals to get to their new homes, more animals to find homes for, and a new business to take care of….

So I took a look at the evidence. Life change is necessary when the status quo makes you want to flee; when it has reached a point of unsustainablity. If “The Only Way Out is Through” then pick something and get to work. My mom said, “this has ‘come to pass’, not ‘come to stay’.” Indeed. Inside of me there is a neat and orderly person trying to crawl out past the layers of mayhem; my outer doesn’t reflect my inner and it feels disingenuous and frustrating. It’s time to change some things.

Onward~

I am used to a mindset of “cures”. “Getting better”. “Do this and it will equal that”.  What I’m finding with Crohn’s Disease and Ulcerative Colitis, from numerous books and personal testimonies, is that this is different than just about anything I’ve managed before. Even with our daughter’s heart defect, we could be reasonably sure that certain meds would produce certain results. Surgery would be needed at definite benchmarks. When we have a cold or a virus, it’s pretty straightforward: drinking lots of water loosens congestion. Take a pain reliever for a headache. Get some rest. It will go away.

But chronic disease? Well, it seems highly individual. Some go into remission, some do not. The two could have done the exact same things and just gotten a different result. Lactose-free helps some and not others. Ditto controvery over fruit/no fruit, fiber/no fiber, antibiotics for maintence/or only for flare ups. “Diet matters somewhat” said my doctor, who prescribed a soft-foods, lacto-free diet but saw nothing amiss with a chicken breast, bacon, and margarine on a previously empty stomach.

The truth is…..no matter what we do, he could get sick again. Take all the meds on schedule, do a home stool-blood test regularly,  eat a pure diet…it’s a disease, not an allergy or obesity issue. He looked great for two years but was developing thousands of dangerous ulcers at the same time.

So I’m making a grocery list with the best of what I’ve been able to read about, already know, and have been told by those who live with their own conditions. I’m trying not to be afraid of drug side-effects and lurking dangers from ulcers and inflammation that may not be overtly obvious until they are quite serious. I want to believe that enough effort (a) + the right diet (b) will equal = a cure (c).  And I’m not sure that’s what life is going to look like anymore…

I’ve been thinking a lot about my title question, “What if you wanted to change your life?”. We never are able to control everything that comes into our lives…and that isn’t what I’ve ever wanted this blog to be about anyway; the controlling of what comes “in”. Rather, it’s deciding how best to live with what I can change. What I do have some say over…and right now, it’s not that chronic disease has come into our lives but instead, the question is how will we change what we can in order to support what we can not.  I’m reminded that Living Deliberately does not mean living without spontaneity or surprise or even calamity; it means we can intentionally adapt our habits so as to live responsibly, with dignity, grace, and gratitude.

Onward~

Want to read more about our efforts to live deliberately even when life throws you a curve ball? Subscribe to my feed .

“Woo hoo! I get to eat breakfast! Did you hear that monkeys???” (said to the little group surrounding my favorite 6 year old).

“Mom? How did president Garfield die?”

“I don’t know honey…I’ll look it up later okay?”

And when I did so, I found that Garfield died 80 days after being shot, likely due to infection from the medical care he recieved (the wounds should not have been fatal). I also found that Garfield that had a lifetime of  a “weak stomach” and a history of anal fisures that required surgery. Did Garfield have Crohn’s or UC? Why did my 6 year old think of him today? Spooky….

Starbucks.  I go for a morning walk, a dose of fresh air, and to see people with other things than the hospital world on their minds. Sometimes I feel an urge to chat while ordering…which usually means I’ll start rambling in the middle of their busiest time of the day when they likely are not even interested, which gee-golly only leads to looks of pity and amusement (ask me how I know).  So I enter quietly, and get a paper and order a coffee. I wonder if they wonder about the faces they see every day…the students, the workforce…or the faces they see for a time and then vanish…the parents of sick children down the street, here for just awhile.

Today the girl who has made me a daily cup every day for almost a week (except for the day I tried to skip the strong stuff for weaker hospital fare, which took 4 freakin’ cups just to get the same effect) gave me what I thought was a knowing, slighly wary and empathetic smile that yes, it’s a new week and I’m still here. After all, I’m clearly not a student or a commuter. But my reaction was to think I’d imagined it and I went ahead with my quiet order. When I got back to our room I noticed this little smiley face and wondered again if they wonder….

Yesterday’s actually….

It was a l-o-n-g day: a 5 am consult with anesthesia, lots of fantastic visitors, surgery, an unexpected diagnosis (and subsequent life adjustment), the news of staying a lot longer rather than going home that day as expected, a very, very traumatic proceedure at the end of the day, a room move…. it was the most exhausting of our stay this time so far.

When I went into the bathroom in our new room I glanced over at the towel rack.  There were two perfectly lined up bath towels and a washcloth draped with precision on the diagonal. I sat there kind of stunned for a few moments…thinking of the likely-overlooked and under-appreciated housekeeping staffer who took a moment of her time and made something pretty. She took a glance and made something ordinary…shine. And though I never saw her and have no way to thank her, she made a difference at the end of a day that was full of intentional kindness, life changes, and stressful hours.

In response to the many notes and emails…what we need or could use:

• Wheaton can not eat at least for the next week. If you come by and bring food, we are trying to keep the food items in the Family Kitchen near our room and out of his sight.
• We will need to find homes for all of our animals except for our dog. This means four puppies, 7 kittens, 1 cat, and 3 chickens. If the puppies and kittens are to go to shelters, we’ll need volunteers from counties who have shelters to take them there themselves; as out of area residents (and our county has no shelter) we can not take them ourselves. If anyone is interested in adopting one, please let us know.
• Wheaton is finding comfort in playing with toy monkeys and dinosaurs. Rather than sweet treats, if you want to send him something, anything with monkeys or dinosaurs will be sure to entertain him quite a bit! Cards and pictures will also be quite welcome.
• Mom and Dad are doing okay for now…big brother and sister are with grandparents in Mississippi and little brother is running amok hither there and yon. With Ronald McDonald House, more grandparents, a flexibile employer, a helpful parish family, and “village” friends we may have a gameplan for the coming days. There are gaps here and there so if you are willing to help but wonder how/where, please let us know. One thing we are running low on is creativity and ideas.
• As ever, prayers are covetted.

The other day I wrote about life changing with the turn of a single sentence. Yesterday it happened again.

“Your son has Crohn’s/Ulcerative Colitis. There is no cure.”

So there it is. Thousands of ulcers through out his GI Track. Lots of options for management but nothing known to cure the disease. And so we regroup.

We’ll be in the hospital for at least another week, if not much longer. We moved to a different floor for long-term, maintenance type care; it has internet in the room so I’ll be back around these parts. We will likely need to address having 17 animals at home that need care, as well as living so far away from the hospital; plans will need to be analyzed and tweaked.

Living with something is better than dying from it as far as generalities go. We are blessed to know very happy, functional people who deal with this challenge. We’ve had great visitors and are in a place with resources. In some ways a new life is beginning.

I’m starting a new feature today as well: The Random Act of Kindness For the Day. As many days as I can (I’m oh-so-bad at 365 things consistently), I’ll share a small moment of kindness that impacted my day. Where they show themselves is sometimes so surprising and always blessing.

Onward~

If you’d like to read more about our journey to live deliberately even when life throws a curve ball, subscribe to my feed.

Interesting title? Today we are in the midst of getting ready for tomorrow…a very “not fun” process called “bowel prep”. I’ll spare ya the details. The last two nights have been almost completely sleepless (part of an upcoming post on being your child’s advocate to be sure) and I’m in a little bit of a fog. Doing funny things like pouring coffee on my salad instead of the chili right next to the coffee cup and walking away from the cash register without my debit card. I’m on auto pilot away from my element and life is a little rough around the edges for it.

I was getting my coffee this morning at the Starbucks that is right next door, drinking a few moments of sunshine while the nurse upstairs went through her morning routine with W. Here is this coffee shop in the middle of a college enviroment…everyone is a little lazy and relaxed; traffic is less than it was on the weekdays. The NY Times is nearby and smart people are hanging out on the porch, oblivious to the fact that there’s a whole ‘nother world one block over.  But I stood in a dusty sunbeam ordering my cup of brewed beauty and lo and behold Dave Matthews’ song Where Are You Going came on. I love, love, love that song on a normal day and on this morning, I felt a little jolt…a shocking kind of comfort of life on the outside and that in time, whatever legnth of time it ends up being, real life will resume again. One where I won’t be spending sleepless nights and hazy days in a disinfected, music-less building watching my boy try to be brave but rather will collect the heavy tomatoes off the garden vines, cook supper in the midst of a busy day, and referree fighting siblings and their many wars.

On the walk back up I remembered when Clara was in the hospital there was a respitory therapist who served as that reminder for me. He was a big, burly guy who had longish hair and a beard like some New England stalwart and was partial to creamy fisherman’s cableknit sweaters. He wore cologne. Every day this strong guy strode up to table looking baby beds holding teeny infants and he helped them breathe. And without knowing it, he had the same effect on the parents. The environment that always smelled of cleaners, latex, paper gowns, medicine, and occassionaly take out or old coffee, was now and then brightened by the tiny wiff of civility. One moment taken to splash a little on in the morning by someone who had no clue the effect he was having, served on more than one occassion to give me hope and perspective that the world we found ourselves in was not the end.

Strange but true. Little things matter; sometimes so much more than we could ever imagine.

I’ve had two really neat run-ins involving Ron Paul’s campaign since being here. On the day we got here I was honked at by a guy in a HUMONGOUS Hummer. He motioned for me to roll down my window and he said, “I LOVE your Ron Paul sticker!! Go Ron Paul!”

The next one was today in the Target parking lot. A mom with three kids, there to do her school shopping, stopped me and said, “Yours is the second Ron Paul sticker I’ve seen today and I don’t know who he is; can you tell me about him?” So I got to tell her all about his ideas, history, consistency, honesty….she’s a registered democrat and willing to change in order to vote someone like him in! I haven’t had time to go do homework while I’ve been here but David said he heard that Ron won both the Alabama and New Hampshire straw polls by a landslide.  Go Ron Paul!

If you are interested in reading more about living deliberately even when life throws you a curve ball, subscribe to my feed!

 Is good nutrition impossible in the hospital?

My little boy came in sick and dedydrated. The no-brainer was to start him on IV fluids. They opted for no food; he had been barely eating before that anyway but they needed his system empty for some tests. Two days later he was ready for “clears”.

In our house we stay away from foods with:

• high fructose corn syrup
• aspartame
• MSG
• carrageenan
• preservatives
• additives like colors
• nitrates and nitrites

At the top of the list of reasons we do this is our boys’ sensitivity to these nasties. From them, we see hyperactivity, impulsivity, reflux, vomitting, constipation, and headaches. What we know is that foods containing these things are “triggers”, allergy style, for Wheaton; a week with them as a steady in his life will make a very sick boy indeed. In the modern American culture it’s almost impossible to stay away from these foods but this week I’ve had a bit of surprise.

In buildings full of people with compromised health it is IMPOSSIBLE to get foods without these additives. My boy was ready for “clear” foods and liquids. This means jello, broth, popsicles, and juices.

• Every juice has high fructose corn syrup, aspertame, or splenda
• all the broth has MSG
• the jello also has hfcs, artificial sweeteners, plus a tons of dye
• the popsicles….. so call “fruit pops”  contain: sugar, corn syrup, high fructose corn syrup (THREE sweeteners?!), food dye, and carageenan.

Very quickly we realized that there was NOTHING he could eat on the entire hospital menu of “clears”. A very kind and sympathetic dietician worked with me to put together a list of solid foods he could try, per his home regimen (sort of…we don’t do canned veggies, meats packed in preservative-ladden juices and broths, or milk masquerading as “whole”) but all was in vain. One popsicle and he was “rejecting” again. Back to IV only and then a few hours later, “clears” again.

One FANTASTIC “village” friend (thanks Ms. Monkey Parade!) made homemade broth for him and jello made with juice. She got him popsicles that really ARE frozen fruit. I headed down the street to Starbucks and got him some juices sweetened without the nasties. So we’ve pretty  much managed to outsource all his “clears”. The doctor I spoke with today (incidentally one of those “exceptions” to my gastro-rule) feels we are looking at some kind of extreme allergies. It is tragic to me that it’s likely the very hospital environment that should make him better will not have the options necessary to provide nutrition while we investigate.

It’s a building full of SICK people and all we eat in the country is food that is pretty much a chemical soup? Oops…I’m forgetting chemical popsicles, chemical sandwiches, vegetable dipped in chemical sauce.  Doesn’t that sound healthy?

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We’re in Children’s of Knoxville for a few days….getting fluids, repeating tests that haven’t been done in years. The new doc wants to start from scratch. Generally, telling me that the doctor who saved my son’s life was absurd is NOT the way to my heart, nor a good way to get things started off right. I’m no spring chicken when it comes to working around with difficult doctors though, and I’ve learned a thing or two about living with your child in a hospital environment. I’ve learned that it’s a safe stereotype that certain specialties seem to attract certain personality types; for instance, cardiologists are generally quiet yet articulate…surgeons are ambitious, optimistic, and adventerous, and gastros….well, gastros seem to be the rudest, most difficult to work with of the bunch, both to their under-staff and with parents. With all stereotypes there are no doubt exceptions to the “rule” but this track record has been so consistent in my experience that it helps me to keep it in mind when dealing with a doc who talks over me, doesn’t explain things, expects me to blindly trust her (soooo not gonna happen), but who is being quite aggressive with the treatment of my child, which is ultimately quite likely in our best interest.

So, from the Family Resource Room of one of the best-run childrens hospitals I’ve been in, here are a few tips from someone who has been there/done that:

• expect everything to take days. If you go in realizing this….that nothing happens over the weekend,  emergencies bump schedules, and that often a “productive day” is having ONE test run…you will be happily surprised if it goes faster. Be flexible and patient and usually the staff will respond favorably, getting you to the front of the line, offering perks, ect. Being easy to work with got me the free access code to long distance in one hospital; this time it means my already fantastic nurse likes to chat and that she seeks to help, rather than avoid, a room with a crabby parent.
• dress to be taken seriously. Really, life in the hosptial is it’s very own unique society. The “rules” are different for the most part. But there are a few things that remain constant: if you are dressed sloppily, keep a messy room, and keep glancing at your TV when staff comes in the room, you will NOT recieve the same intelligent service and respect you get if you are dressed in the morning, have run a brush through your hair, thrown away your take out containers, and folded the blankets. I follow this for regular doctor visits too: dress as seriously as you want to be taken. I’m not here just to let them run the show…I want stuff explained to me, I want them to pay attention to his history and neccessary precautions, I want them to know I am an involved parent who has done as much homework as I can to understand what they are talking about.  Like it or not, there is a bit of “look the part” involved here.
• make sure things are explained well. If they are not… ASK. They will have you sign stuff that says you understand; make sure you do. Sometimes tests are repeated unncessarily or are done more to cover the doctor’s behind than the need of your child…understand WHY something is being done. This is especially important if you have a difficult insurance company that very well may turn to YOU to get justification for an expense. The staff is there to do make sure you are educated as much as you ask for it….so do so.
• GET UP EARLY. This is a biggie. Doctors do rounds early…7 ish. And the nurses are switching shifts around that time. Usually you are going to see your nurse again several times that day. But the docs you may only get ONE shot at. Get up early enough to make yourself presentable (brush your teeth, get dressed, have some coffee) because when they stroll in for their rounds, you need to be ready. They will talk amongst themselves, leave a note for the nurse, and leave if you are sleeping through it or groggily glancing at them. Be ready to be interactive and you’ll likely get it.
• Eat as well as possible. This hospital has something I wished for but didn’t have in our other stays elsewhere: a family kitchen! Around the clock there is free hot coffee, a fridge for labeled food and groceries, an ice machine, and a microwave. Don’t succumb to the snack machines and try to live off chips and soda and candy….get sandwiches, fruit, and water. Oh, and another thing ETCH has…a parent lunch delivery. For 3 bucks parents can order a sandwich, fruit, drink, and snack to be delivered at lunch. This is a GREAT idea. It’s really hard if you are in here with a very sick child and feel like you can’t leave; having the food come to you is a big deal. But anyway…stay regular. Drink enough water. Take a walk. And eat as well as you can.
• Use the Child Life Services! This has been great in all three Children’s systems we’ve been in. She comes in with medical gear to explain proceedures. She has crafts. Bedside Nintendo. Art supplies. Games and Toys. Sibling helps. She helps keep the environment calm and respectful during proceedures like IV placement and such…can’t say enough good stuff about Child Life. It’s one of my favorite hospital recources.
• Being an in-patient gives you tons of access to stuff that is much harder to get on the outside. Use this to your advantage! Need a consult? Speak up. Want a test? Ask. Need a med? Ask. The entire process is much faster on the inside…use it wisely.
• your nurse is your gateway to information. I can’t remember ever having a “bad” nurse in a children’s hospital (labor and delivery is a different story LOL).  They are generally cheerful and friendly and if you are the same to them, they are extremely helpful. They have access to your doctors and can forward questions. They will look out for your interests. They know “insider” stuff. They really do have a huge influence on your experience (just like labor and delivery LOL) so again, don’t overlook them and be ready to engage in thoughtful ways.
• be aware of doctors working relationships. Even if they don’t all like each other, they are professionals and will defend one another. Be careful about complaining about one to another’s colleague. Be especially mindful if you are hopping from one doc to another within the same practice. If the flaws of one doc are something you can bear because the pro’s outweight the con’s, then do so. You need to be sensitive about knowing when to rock the boat and when not to.
• When someone on the outside asks, “what can I do?” have some practical answers ready. If they offer to bring you something, ask for fruit or healthy snacks to have on hand. Don’t forget you may need a headache releiver for fatigue or stress. It’s hard to get those on the inside if you are a parent so ask your visitors to bring it.
• if you can, land in a hospital near a college, like ETCH is next to UT. The resources are plentiful (wi-fi, take out variety, delivery, etc) just due to location. There are interns a plenty (motivated youngsters still willing to think outside the medical “box”) in hospitals like that/these.

It’s a stressful place where rest is hard to come by and decisions are usually major. But there are ways to lessen some of the strain. Even in the hospital, life goes on.

Want to read more about living deliberately even when life throws you a curve ball? Subscribe to my feed!

*due to an upstream network issue, the site was down and had to revert to the previous night’s back up, meaning this post wasn’t saved (so happy for Google’s cache today!). It shows there were comments made but those were unfortunately not saved. Also, any email sent to me on Friday or Saturday has been lost; feel free to send it again: tia AT sixredheads DOT com.