Time Flies

I finally got around to changing my desktop screen saver and wallpaper today from winter pictures to spring pictures.  While I was looking through my pictures to choose my wallpaper, I found these two pictures of Joel.  How did that little squishy boy grow up so fast?  I hated hearing older parents say to enjoy every minute because time goes so quickly.  When my kids were making me crazy with their fighting and demanding, I wondered when that fast-moving time was ever going to start.  Now that I look back at the pictures, I realize it was going the whole time.  I was just so focused on the difficult parts of life that I didn't realize it.  So I'm crying as I look at that little boy that I can't get back to hug one more time because he's an adult now.  He lets me hug him, but it's not the same as hugging my little boy.  BUT God blessed me with a second chance:  Seth.  He can't replace Joel's clever intelligence or Makenzie's princess sweet sassiness or Luke's hilarious stories, but his life is a clock slowed down.  He's twelve years old, but I can still hold him, stare at him, trace his chubby little fingers, squeeze his baby face cheeks because regular, racing time doesn't apply to Seth.  He grows more slowly, learns more slowly, accomplishes goals and milestones more slowly.  I'm thankful!!

BOOKS!

I love, love LOVE lists . . . and books!  I'm always paying attention when people say they're reading something interesting.  I'd like to say that I read to improve my mind and my life, but the truth is that I read to compare reality and to escape reality.  Mostly, my life is super great!  I have SO much to be thankful for, SO many reasons to honestly say that LIFE IS BEAUTIFUL!  Sometimes, though, life is boring, and sometimes life is difficult.  No matter which of these mindsets I'm in, reading someone else's story makes me see that either my life is great or (when my life isn't going so great) my life could obviously be worse.  Reading is a way to travel and stick my nose in other people's interesting business without leaving my house and without offending anyone with my nosiness.

"Top 10 Favorites" list that I made in 2013:
  1.  The Blue Castle by L.M. Montgomery
  2.  So B. It by Sarah Weeks
  3.  Onward Crispy Shoulders by Mary Perry
  4.  Tuck Everlasting by Natalie Babbett
  5.  Jane Eyre by Charlotte Bronte
  6.  The Glass Lake by Maeve Binchey
  7.  Blessings by Anna Quindlen
  8.  The Shack by William P. Young
  9.  The Five People You Meet in Heaven by Mitch Albom
10.  Firefly Lane by Kristin Hannah

I'm not sure if that's still my top 10 favorites, but it's a decent list.  When someone asks for book recommendations, I usually give him or her my favorite authors or my favorites in that person's favorite genre.  Today I feel like writing out the complete list.  I do not read self-help books or instruction books or nonfiction (although an occasional biography or autobiography is on one of my lists).  Those kinds of books put me to sleep.  For the most part, I read fiction only.  If I want to grow spiritually, I read the Bible.  (Reminder . . . I would never judge anyone for their reading choices, and I expect the same respect.)  I also don't just read Christian fiction.  My favorite kinds of books involve believable characters living life.  Many of the books on my lists would be offensive to many people because of bad language and immorality.  I don't like the bad language or the immorality, but I look past those things to get the overall story and the day-to-day life of characters that are not living my life.  So if anyone picks a book to read from my lists, he or she would be wise to look up the book on Goodreads to get an idea whether or not the book might be offensive in any way (or ask me . . . I'll be honest).  Speaking of Goodreads, I've logged every book I've read since at least 2008 (https://www.goodreads.com).  My name on Goodreads is "Michelle Hofacker" (some places, I make my name some version of "Polar Mom," but I guess I wasn't feeling inventive when I set up my Goodreads account) if you want to find my lists on that website.

Favorite Authors:
  1.  Maeve Binchy (I prefer novels to short stories, but everything she writes is brilliant!!!  Sadly, this author died, so her list of novels is complete.  I've found a couple authors that might be somewhat similar, but I haven't read enough of them to know for sure -- Marcia Willett and Sharon Owens.)
  2.  Lisa Samson (I own and have read every novel she's written except the young adult books.)
  3.  Richard Paul Evans (Not sure about the "Michael Vey" series, but I've read several of his other books and loved them.)
  4.  Jan Karon (The Mitford Series -- I literally felt depressed and cried when I came to the end of the Mitford Series.  Thankfully, she wrote some more a few years later.)
  5.  Charlotte Bronte
  6.  Emily Bronte
  7.  Eleanor Porter (and the other authors that finished the Pollyanna series)
  8.  Janet Evanovich (Stephanie Plum series)
  9.  Jane Austen (A little difficult to read, but great stories.)
10.  Francine Rivers (I haven't read all of her novels, but the ones I've read were good.  The best one was The Last Sin Eater.  That one was hard to put down!)
11.  Louisa May Alcott
12.  L.M. Montgomery
13.  Kristin Hannah (Modern popular fiction isn't usually "my thing," but her books are very interesting.)

Books by other authors that I thought were amazing:
-- The Time Traveler's Wife by Audrey Niffenegger
-- Fried Green Tomatoes at the Whistle Stop Cafe by Fannie Flagg
-- The Memory Keeper's Daughter by Kim Edwards
-- To Kill a Mockingbird by Harper Lee
-- The Bridges of Madison County by Robert James Waller
-- The Help by Kathryn Stockett
-- Bridge of Sighs by Richard Russo
-- The Distant Hours by Kate Morton

Authors that are good, but not my favorites -- still interesting, though:
Jodi Picoult
Cecelia Ahern
Marilynne Robinson
Nicholas Sparks
Leisha Kelly (This author grew up in the same county I did.  She tragically died in a car accident several years ago.)
Ann B. Ross (Miss Julia series)
Charles Dickens (Difficult to get through, requires serious concentration, but worth it.)
Anne Bronte (Ditto previous comment.)
Karen Kingsbury
Anita Shreve
Lawana Blackwell
Kate Morton
Anna Quindlen
Gil McNeal
Kate Jacobs
Elizabeth Bass
Fannie Flagg

Since I'm ALWAYS in the middle of a book (I have a book in my purse just in case I have to wait somewhere and have the chance to read at least a paragraph.) and always buying or borrowing books by new authors, this list will always be changing and lengthening.  As of today, though, this is a pretty good representation of my recommendations :-)

Seth's health

My sweet Seth had some routine blood work done in January.  His pediatrician called a few days later to tell me that Seth has celiac disease and probably Grave's disease.  He sent the lab orders to have more blood work done to get more details for the endocrinologist.  Today we met with the endocrinologist to get her diagnosis and plan of care.  Science has never been my area of expertise, but here's my best attempt at explaining these two problems.

Having been diagnosed with celiac disease over 25 years ago, I was not overly surprised or concerned with that part of the diagnosis.  Celiac disease is an autoimmune condition involving digestion.  The small intestine is incapable of digesting gluten from wheat, rye, and barley.  It tries to digest those foods anyway and damages itself with the effort.  That damage will heal over the course of up to a year IF it does not keep damaging itself trying to digest more gluten.  Left untreated, though, the damage can become permanent, causing the intestine to be incapable of digesting anything at all.  At that point, the body would starve, regardless of how much food it receives.  The medical community has yet to discover any medication that cures this disease.  That sounds like bad news, but it's actually good news in my opinion.  The only treatment for celiac disease is a strict gluten-free diet.  If the intestine doesn't have to try to digest what it can't handle, it will heal and stay healed.  For Seth and me, "gluten-free" is not a fad.  It's a life-saving choice.  We don't have extra doctor's appointments, medications, or blood work.  Just a gluten-free diet.

Grave's disease is trickier to understand.  The thyroid is a gland in the front of the neck.  It produces hormones that help all of the organs work well and control how the body uses food for energy.  Many people with Down syndrome have a thyroid that doesn't produce enough of these hormones and have to take a man-made version of those hormones (synthroid).  Without a normal level of those hormones, people might be more tired and cold than normal, have a slow heart rate and low metabolism, and not grow at a normal rate.  Seth's thyroid is producing too many of those hormones, though, and this causes the body (if you think of the body as a car) to idle too fast.  Extended "fast idling" could eventually lead to heart failure.  Since Seth is showing no symptoms at all of hyperthyroidism (such as being nervous, having trouble sleeping, or losing weight), the doctor is almost certain that this condition is a recent development and that his heart has not been damaged.  The first treatment for Grave's disease (named after a man whose last name was Graves, not relating to a death rate at all) is to give Seth a drug that lowers the amount of hormone his thyroid makes.  Two possible side effects are a rash that doesn't go away after taking Benedryl and painfully swollen joints.  The longest he'll have to take this medicine is 18 months.  He'll have to have his blood checked every 4-6 weeks to see if the medication is working (the doctor prescribed numbing lotion so that this is less horrible from now on), to see if we can lower the dosage, and to check for other adverse reactions in the body.  If the medicine causes any negative reactions or if the disease hasn't gone into remission by that 18-month mark, he'll have his thyroid removed and take synthroid for the rest of his life.  The doctor said that the medicine works for about 50% of patients.

The bottom line is that Seth will be fine.  We're praying, of course, that Seth has no negative side effects from the medicine and that it works perfectly, putting the disease in remission.  If that's not God's will, we'll be praying for the doctor to safely remove Seth's thyroid without hurting any of the valuable body parts that are close to the thyroid and for the endocrinologist to know the exactly right amount of synthroid to prescribe for Seth.

Down syndrome awareness: AFFECTION

This is one of my favorite pictures of Seth and me because it shows an important aspect of Down syndrome:  affection.  I can't speak for all parents of children with Down syndrome, but Seth is SUPER affectionate.  He can also be SUPER hateful, but I'll save that for another post.  Seth shows affection in many ways:  physically (hugs, high fives, smiles, holding hands, kisses), verbally ("I love you," "You're the best mom ever!"), and practically (being helpful, listening to people's words and/or watching people's body language to see what he can do to be helpful).

That last one showed up just yesterday TWICE.  Usually, Seth likes to cause CRAZY chaos when we go shopping (running away because he loves to be chased or grabbing things that he thinks he wants).  Because of this tendency, if you see Seth and me shopping together, you'll see me pushing a cart with our purchases and pulling a cart with Seth sitting on a pile of pillows and blankets and watching a movie with headphones on.  This is the method that I've found to work the best since shopping is my daytime job, and crazy chaos is not what I get paid for.  Yesterday, Seth was in his cart watching his movie quietly when I realized that I needed two more bags of soup from the very top shelf.  When Seth was still in school, I would've either climbed the shelves to reach the top or taken the extra 15 minutes to find a store employee who could get a ladder to help me.  Now that I get to take Seth with me, though, I don't need to risk my life or look for the employees that seem to be hiding when I need help.  Seth gladly puts down his movie, stands up in the cart, and reaches whatever I need.  He gets HUGE praise for this help, of course, which makes him want to help more.

The second time Seth was helpful yesterday was at Costco.  I didn't have time to go to Costco before noon, so I knew it was going to be too crowded to use the two-cart method.  Seth agreed to help me shop.  I was nervous!!  Seth often agrees to be good and then forgets his promise in less than five minutes.  Yesterday he did not forget!  He really helped me!  He didn't act like a wild animal; he didn't yell at anyone; he didn't knock things off the shelves; he didn't push the cart into other people; he didn't whine about not getting something that he saw and wanted.  He helped me push the cart carefully, got exactly what I asked him to get from the shelves, put them carefully in the cart, waited patiently in the check-out line, and walked nicely to the car with me.  For his shockingly good behavior, Seth got a box of rice krispie treats (one of his favorites).

A side note to this, however, is that Seth's behavior is always on his terms.  He behaves when HE feels like it, and he misbehaves when he feels like it.  There is no reward fabulous enough and no punishment horrible enough to MAKE Seth do or not do something.  He has to decide for himself.  I try VERY hard to offer every incentive to be good and nice, hoping and praying that the rewards for good behavior will be more enticing than the fun of misbehaving.  Seth has his own version of logic, though, so even rice krispie treats aren't always enough to convince him to be good.  I can never underestimate my sweet Seth or assume that I know what he's going to do.  He is more than capable of unbelievably bad behavior . . . and also completely capable of perfect behavior :-)

NO MORE FB DRAMA!!

I haven't posted in this blog for three years because I've been posting everything on facebook.  Send me a friend request if you want to catch up on what's been happening with the Hofacker family :-)  I'm so tired of the drama on facebook, though, and plan to post here again.

The most recent events of "Michelle's Day" involve graduations.  My mom and stepdad came up to attend Joel's graduation from high school.

 Joel not only graduated from high school, but he also graduated from manual labor summer jobs.  He's working with the children's ministry pastor this summer and loves it.

 Makenzie graduated from summer couch potato/social butterfly to a part-time secretary at church.

 Luke graduated from Seth watcher to carpet cleaner at church/school.  He's not loving that, so growing up isn't quite agreeing with my Lukey Pookey.  With his Bible app, music, dramatized Bible on tape (I was shocked to find out that Fred Meyer is once again selling cassette tape walkmans!!!), and regular visits from Dad, Mom, and Seth, Luke is surviving.

 Seth graduated from Baxter Elementary special education program. . .

 . . . and started "school home" with me as his main teacher.  When he feels like cooperating, Seth is a really good student and learns fairly quickly.

 Summer walks officially began Tuesday, May 30.  Seth and I walk to the church at least once per day to either visit Luke or to pick him up to walk home together after work.

Talking to Seth

Understanding Seth's speech is often difficult, especially when he calls things by special names.  We've adjusted to some of his most common nicknames.  We no longer ask him to put his movies in the cabinet or the hutch.  He puts them in "the brown."  When I want to sit outside with Seth, he always sits in "the blue" (not "the blue chair," just "the blue") and I always sit in "the purple" even though my chair is actually pink.  We don't offer sausage egg biscuits for breakfast because they're called "cheeseburgers."  This also means that when we go to a restaurant, we can't order cheeseburgers because those are for breakfast.  We order hamburgers and whisper to the waitress to please put cheese on it.  When I go to sleep in the boys' room, I have to face Seth or he tells me to "scoot my head!!"  And depending on what his favorite movie of the day is, Seth often doesn't respond to the name "Seth."  Some days he's Scooby, some days he's Megamind, etc.  He also renames everyone else in the house and yells at anyone who dares to use any name but what he's decided for the day.  Today he is "the doctor" because he went to the pediatrician and then to the ENT.  When the ENT's nurse asked what our appointment was for, Seth answered, "Seth Allen Hofacker, DOCTOR."  He thought, of course, that being the doctor entitled him to use all of the doctor's equipment.  There are also several things he says that none of us can figure out.  Today, he held up a toy in the doctor's waiting room that looked like a crane or some other big construction machine.  He was calling it something that sounded to me like "baseball," but he got irritated with me for asking if that's what he said.  I wish there were a class to teach me Seth language so that I could understand everything my sweet boy says!

outside with Seth

Seth and I were home alone.  After watching several movies, Seth told me that he wanted to go outside :-)

 

First, he had to clean the snow out of the swing.

 

Then he could climb in.

 

Yay -- "I did it all by myself!"

 

"ok -- enough of that."

 

Time to climb.

 

try #1 to get into the tree house

 

try #2 to get in the treehouse

 

"Forget the treehouse -- how about this rope ladder."

 

"Or maybe I could climb up this pool ladder and reach the deck and make Mom freak out."

 

Falling off the bottom rung of the ladder makes the perfect opportunity to make a snow angel.

 

He seemed to think I'd be upset about eating snow, but since I didn't mind at all, it was a little less fun.

 

try #3 to get to the treehouse -- This time, he even asked me to help him get across.  I said no way, of course.  The treehouse is dangerous for Seth.

 

singing loudly in the silence -- not sure why it was so quiet outside.  There are lots of children who live on the street behind us.  Maybe they're all hibernating.