disappointment

Yesterday, Seth had his blood draw to check on his thyroid.  His reward for getting a "shot" and my reward for taking him and remembering the lidocaine was a peanut butter shake from DQ.  He's holding his left arm up because it still has the bandage on it.  This morning before I made Seth's strawberry milk (my method of giving him his thyroid meds), I checked my e-mail for a note from the endocrinologist.  The message was a huge disappointment:  the labs looked good, but Seth needs to stay on the same dose of thyroid meds for three months.  The good part of that is that Seth doesn't need any "shots" for three whole months.  The bad part, though, is that his thyroid stopped responding to the meds like it did the past several months.  The doctor said that some people hit a plateau and then the meds start working well again.  I'm pretty sure that if there's no change by October, Seth will have to have his thyroid removed and be on synthroid (hormone replacement to do the work that the thyroid is supposed to do) for the rest of his life.  Many people either have a slow-working thyroid or no thyroid at all and have to take meds, so it's not the end of the world.  I was just hoping that Seth would be the super great "everything went so well, it's amazing" kind of case.

Obviously, it's easier to trust God when He seems to be making everything go well.  This isn't exactly going well.  It's not necessarily bad news, but it's definitely not the great news we've gotten after the previous blood draws.  God's not a genie in a bottle, though.  His way involves His timing, His understanding, His will, not my demands or wishes.  As difficult as it is, I have to trust that God will work everything out for the best.  While I wait to see what He'll do over the next three months, I'll keep on giving Seth one and a half crushed pills every morning in his strawberry milk and be thankful that Seth is mine and that he is basically healthy.

Flowers - Allium

I wish that each flower had only one meaning!  After reading The Language of Flowers by Vanessa Diffenbaugh (an UNBELIEVABLY great novel!!!!!), I wanted to learn the message of each flower.  The problem with that is that each flower has several meanings, and many of those meanings are contradictory.  I usually "give" flowers to people via facebook to say "Happy Birthday," and I pick whatever flowers look prettiest or are appropriate for the season.  Now I'm wanting to send flowers that have meaning.  I'm not just saying, "Happy Birthday" now.  I'm also giving a birthday wish.  Today, I sent allium (a wish for prosperity).  Other meanings include unity, patience, and humility.  I guess those go along with prosperity, though, since they're often requirements to prosper.

Botanical Garden

What a BEAUTIFUL afternoon at the Alaska Botanical Garden!!!

BEAUTIFUL walks!

This path is in the Alaska Botanical Garden.  I LOVE the little stick fence on both sides of the path!!!!  I love pictures of paths, especially paths that are beautiful and have unseen ends.

I also love pictures of benches!!!  I think Seth took this picture on his ipad (or "high-pad" as he calls it for some reason).  These benches are behind the condos on Cheney Lake.

I think these purple flowers are hydrangea.  I read that they are normally purple, but that different soils can make them change colors.  I love how they almost seem to have been altered like hot house flowers that have been dyed, but they couldn't have been because they're in the ground at the Botanical Garden.

So many pieces of beauty on my walks with Seth!!!!

One Tiny Sliver

Seth went to the lab for his six-week blood draw.  I almost didn't take him because I couldn't find the lidocaine to numb his poor little arm.  When I called the pharmacy to order a refill, they told me that it wouldn't be available until Friday at the earliest.  Since it was six weeks on the dot from the last blood test, I didn't want to put off the test.  Seth was brave and didn't move or yell at all when the phlebotomist stuck in the needle.  I was so proud of him, especially since a little girl with Down syndrome was screaming in the other chair.  The poor girl did NOT want to have her blood drawn.  On our way back out to the car, Seth looked up to the cloud-covered sky and pointed at the one tiny sliver of sky without clouds and said, "Look, Mom!  Beautiful blue sky!"  God, please give me that ability again to find pieces of beauty even in the grayest darkness!

hygiene

Seth can get undressed and dressed all by himself and can even (usually) pick clothes that match (or at least come close).  Today he added another step in his morning hygiene routine:  "Mom, my armpits stink.  I can't go to Meema's with armpits stink."  LOL!!!!  The only thing that really ever stinks on him is his hair because he wears a hat every minute that he's awake, but he uses deodorant (when I remember) just in case he gets stinky.  Today, I did NOT remember, but he DID!  :-)

Tears of Joy

Homeschooling Seth makes me cry sometimes.  We have had a few days that involved yelling, spanking, crying . . . failure.  We've had a few days that Seth tried his best, but he just can't do what I asked him to do which makes me cry . . . sadness.  Today, though, I was crying because HE DID IT all by himself!!!!  The task was so simple, but it took Seth three days of practice to understand how to put the numbers one through ten in order.  Other days, he would get 1, 2, 3, and maybe 4 but then think that 7 went next.  He would only know what number to put next if I counted out loud starting at one, not just once, but six times to get numbers four through nine in order (obviously, when the number ten was all that was left, he knew what to do without re-counting).  Today, though, he whispered the numbers himself.  I sat and watched and gave no input at all.  If he put the numbers in the wrong order (which he did a few times), he corrected them himself.  He didn't need to re-count to know what the next number was every time.  He only re-counted to check to see if they were in the correct order.  Four attempts in a row he put the numbered cards in numerical order!

Yesterday, I got to spend the evening with three sweet girls from church.  One of them is two years old and said many things just like Seth does when he's not feeling like being sociable:  "Leave me alone," "Don't touch me," and "Go away!"  All of those words made me chuckle because she's SO cute and spunky!  When she was feeling more comfortable, she said sweet things like, "Thank you," and "Are you ok?" when I said "ouch" as I tried to stand up straight after being on the ground with her.  Another of the girls is seven years old and is perfectly capable of taking care of herself and her little sister.  She's polite, fun, and funny.  And then there's the 13-year-old.  She's only two months older than Seth, but is a beautiful big sister who can (and does) take care of her younger sisters and herself just like a young mommy.  Everything about her shows normal or even above average development.  She's smart, pretty, caring, polite, and competent.  She can see what needs to be done or said and react appropriately.  Everything about these three delightful girls shows perfect development and great parenting.  I try so hard not to compare Seth to anyone else, but sometimes comparisons hit me in the face, especially when I realize that a certain child is the same age as Seth.  I can get so completely wrapped up in Seth that I forget how different he is from other people his age.

Comparisons like last night are a little difficult, but necessary for me to remember that my reality isn't what it was before I had Seth.  All at the same time, the normal development of those three sweet girls and the snail-pace slow development of my sweet boy are parts of reality.  The differences aren't cause for mourning because God made Seth exactly how He wanted him to be.  Over-analyzing the whole concept of being happy for both sides of reality can make me confused and sad, and that's probably Satan's attempt to steal the joy that God intended when He gave me Seth.  I can't allow the thought, "This isn't fair!" to be any part of my thought process.  Accepting and seeing the benefits of both sides of reality causes celebration.  I'm so glad for the successes of my sweetheart Seth,  and I'm equally glad for the successes of the sweethearts who visited yesterday.

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.