Tuesday, December 29, 2015

January 2016 Book List

After I wrote the list of books I want to read in 2016 in my Erin Condren planner, I realized I was going to need some kind of strategy to make it even halfway through the list.  My plan is to pick books from each set of lists (yes, I have multiple lists!) and mix them together so I knock out books in each category every month.  Here are my picks for January:

Yes, the oven light is on in the background, but I'm
taking pictures of books.  This is how fires start
in our house.

The Girl Who Loved Tom Gordon is one from the list D made for me.  I don't usually read Stephen King, but I did read The Colorado Kid at D's request, and it was good.  I'm going to give this one a shot.

Bread and Wine is one my friend, Alta, recommended.  I just started it and I'm already in love.  Food, Jesus, people, all in one book.  Pretty much perfection in my eyes.

Best Boy is from the BookPage Top 50 picks from 2015.  It's written from the perspective of an adult male with autism, and the few pages I've read are intriguing.

The Twelve is the sequel to The Passage, a post-apocalyptic vampire story.  The first one was an over 700 pound behemoth, but I got sucked in and now can't stop.  The third book is due out in May of 2016, so it's already on my list.

If you happen to read something amazing, please let me know.  I weep at the thought that there are books I may somehow be missing.  Help me.

Monday, December 28, 2015

Results of the Somewhat Definitive Variety

After haggling with insurance companies, finding an insurance-approved lab, and praying for a definitive result, I received an iffy one:  it does not appear I carry the gene combination most dominate in those with Celiac disease.  The conversation went as follows:

Me:  I don’t know how to read these results you emailed me because I’m not a doctor.

My doctor: Even if you were, it wouldn’t help much.  They’re not meant to be easy to read.  It does not appear you have the combination of genes that would make you at high risk for Celiac.  However, with the symptoms you had before you gave up gluten, I would have asked for an endoscopy if you were still on gluten just to check. 

Me:  So this isn’t a no? 

My doctor:  It’s a probably not.  You seem to react very negatively to gluten and I wouldn’t eat it, especially with your thyroid issues.  But if I had to bet, these results mean your husband is probably the only genetic link for your daughter.

Good news, probably.  We went on to discuss the difficulty of diagnosing Celiac and how there should be an easier way, but it’s usually a game of putting puzzle pieces together from a variety of tests to find the closest fit.  For Wren it was an easy diagnosis due to her nearly starving, and for D all the pieces fit and his tests were positive.  It doesn’t look like, despite the range of other auto-immune problems I’ve experienced, that Celiac is likely to be a part of the equation for me. 

What changes?  Nothing.  I have been much better off without gluten and we don’t keep it in the house.  What should have changed for me emotionally was that I should have felt a sense of relief.  Oddly, I stood in my kitchen after putting down my phone and fought back tears.  I recognized it immediately: survivor’s guilt.  My daughter and husband still have this disease.  They still deal with the everyday effects on their lives; they suffer due to lack of knowledge on how to fully treat this disease; if new research is accurate, they are at higher risk of suffering other illnesses or earlier death than previously thought due to this beast that refuses to yield. 

I know their lives are in God’s hands; I know we’ve been blessed as they’ve made progress.  I also know me having Celiac would not have made them have less Celiac.  It wouldn’t have benefitted either of them for me to suffer as well.  But maybe in a sense it would have benefitted me as I’m struggling with the idea of getting off so easily when D has more GI procedures on the horizon and Wren still needs daily help to move stool from her body.  I don’t know.  I sometimes give both D and Wren a hard time for wearing their feelings on their sleeves and for being affected by all the little 
things.  Here’s an example:

Wren: Mom, I found this card I made you a while back.  It says you’re the best mom ever.

Me:  I remember that card.  It was so sweet!

Wren, starting to cry:  It’s just, I just……

Me:  What just happened?

D holds her in his arms and whispers in her ear.  When Wren calms down she goes off to play with Sam, and D looks up at me and I get ready to ask him what he thinks is wrong with Wren.  Does she need more selenium?  I see D’s eyes getting misty.

Me:  What?  You're upset now?

D:  You know how it is.  Things get to you. 

Me:  How does a kind card made for me make you two cry?

D:  It's sweet. She just loves you so much, then she thinks about that love, then it feels overwhelming, then she gets scared you might die.  All the normal stuff.

Me:  That is not a normal reaction.  The fact that you understand it means you are both wired wonky.

But I stood in my kitchen after talking to the doctor and told D apologetically that I did not share his illness. 

D:  That’s good.  We’re happy for that.

Me:  Then why do I somehow feel completely disconnected from you and Wren, like I can’t help you properly anymore. 

D didn’t say because I’m wired wonky.  He just shook his head and said, “You take care of us.” 

This is supposed to be a good news blog post, but apparently I am also wired wonky so it’s more of a mixed feeling deal.  I’m happy for not being afflicted with this disease.  I’m sad because two of my most loved people are and I can't change it.  I'm left to sit still with that reality and figure out what it is I'm supposed to learn.  

For the whole story on why I didn't take the traditional route for testing, click here.

Thursday, December 24, 2015

Samuel Dylan at 5

Sammy, who's middle name came from the famous Bob, just turned 5.  Here are some important facts about this little man.

Favorite Way to Relax:  hot baths

Favorite Candy: M&Ms

Favorite Subject to Study: Pinball math game(addition)

Favorite Memories: Dates with mom or dad

Favorite Food: okra

Favorite Destination: the bakery

This year Sammy:

attended VBS for the first time;
learned to write letters;
received all his first year AWANAS badges and is working on his second year;
became an expert on The Three Stooges and The Headless Horseman.

Sammy, like every person in our family, has big feelings and is passionate about his interests.  He can quote movies and do spot-on impersonations, as well as name a song by just the first few notes.  He enjoys movie scores just like his dad, and like D he is exceptionally talented in the area of visual arts. Sammy is a foodie and likes to be involved in the kitchen.  He frequently pulls up a chair to sit in front of the oven and watch the food.

What Sammy would really like is for me to get pregnant and give him a brother.  He does not understand that the odds are not in his favor.  He loves his sisters but enjoys time with his male cousin, Kainan, and his guy friends.  

This is the first year that Sammy's birthday has not released the deluge of emotions associated with all that happened after his birth.  The pneumonia memories feel like just that, memories.  Sam's asthma and the twitchy feeling I get every time we drive past Children's are the most prominent scars we carry from that time.  It took half a decade, but I can finally celebrate this kid's life without the haunting flashbacks to his near death.  He made it.  God has a plan for him.  I love watching it unfold.

Thursday, December 17, 2015

Wren at 7

After interviewing Wren, I have all the updates on this awesome lady.  Here's what I learned:

Wren's Idea of a Perfect Day:  Long walks with family

Perfect Playdate:  Birthday party

Proudest Accomplishment This Year:  learning to ride her bike without training wheels

Ways She Wants to Grow in the Lord:  Share Him with others and worship him all the time

Favorite Subjects of Study:  Advent activities and bugs

What She's Most Looking Forward to About Being 7:  Telling people she is 7

What She Wants More Than Anything:  Family to be happy and no one to be sick

Favorite Way to Relax: Have someone scratch her back

Favorite Part of AWANAS:  talking with friends

Hardest Challenge of the Year:  enemas

Favorite Memory: birthday parties, but there are lots of good days

One thing she would change if she could: If her family was sick, she'd change it so she could suffer their sickness instead.

Eowyn in the blue, probably.

Wren was wearing my old lady sweater while
working on her embroidery and waiting to poop.
I'm not sure if she just turned 7 or 70.
Seven hit me hard for some reason.  I think it's like one of my friends said, I can remember being seven.  I have memories before that, but seven seems like the time I can go back to and recall tons of information.  As a parent, I want all the memories to be perfect, but as a realist I'll settle for mostly good with the bad ones offering learning experiences.  Here's to another year!

Wednesday, December 9, 2015

Best Birthday EVER

This is the day that the Lord has made, we will rejoice and be glad in it.  Psalms 118:24

While I was concerned that a visit to the GI on her birthday would be a dark mark, it actually ended up being icing on the cake.  Today we found out the following about Ms. Wren:

Wren’s colon seems clear.  She is still going to need some assistance for the next couple of months to keep it that way, but she should be able to wean off help in the next two months and be back to normal.

Wren is in remission.  She has been for two years.  Our pediatrician was reading her results incorrectly.

It’s a lot to process in the best possible way.  First, the question I know everyone probably has:  how did this happen?

Well, Wren’s pediatrician referred us to a GI when she was first diagnosed in 2011.  The GI looked at Wren’s blood test results and then said we needed to set up an endoscopy.  However, she wanted Wren, who had been off gluten for three weeks and was still pooping out unprocessed food, to gluten up for the endoscopy.  I asked her if she really doubted Wren’s diagnosis based on her blood test results.  She said no, she knew Wren had Celiac just based on the blood test.  Why then, I asked, do we need to hurt her by giving her gluten?  Protocol.  That was the answer I received.  When I refused to hurt my child due to protocol, this doctor told me the GI community would be unwilling to help my daughter in any way until I agreed to her terms.  They wouldn't even view her as a child with Celiac.  She said this as she wiped up stray carrots that had fallen out of my daughter's diaper.  We walked out.  We didn’t go back.

Our pediatrician, naturopath, and for a while a dietician, helped with our concerns as we transitioned to a gluten-free lifestyle.  When Wren’s body still exhibited problems with her adrenals, her thyroid, her liver, and her vitamin absorption, the naturopath handled it.  We watched her get better and were happy to move forward. 

Wren didn’t have her first remission blood test until 2014.  Her scores were so bad when she was diagnosed in 2011 that no one believed she would be in remission any sooner than that.  Her TTG IGG was high, and came back high again in 2015.  This is where it would have been good to have a GI, but we didn’t know that.  I had no idea our doctor’s interpretations of the scores could even be in question.  I had no idea there was more than one way to read them. 

It was Wren’s colon issues that led us to a new GI, a GI who told me today she would not have asked us to put Wren through an endoscopy four years ago.  She saw those results from 2011 and said there was no question; Celiac ravaged Wren’s tiny body.  Of course she had Celiac.  She then explained the difference between the IGG and IGA scores and assured us she was in remission. 

So, what can you learn from our long journey?

Let the holistic community help you.
That’s right, I don’t begrudge our pediatrician, who is more holistically-minded, for an error.  I hate that it happened, and D and I stood together and cried in the backyard when the stress we'd been carrying due to this mistake finally made its way out of our systems. However, she and her team of holistically-minded helpers ushered us through a hard time.  Without them it is very probable Wren would be on chronic medication for her thyroid and other various issues by now.  They didn’t band-aid fix problems that were thrown our way due to her Celiac; they knocked them out at the roots, and for that I am eternally grateful.

Find the RIGHT GI.
Our first experience hurt, especially during a time where we were so raw and trying to figure out what to do.  We were told that our unwillingness to hurt our child disqualified us from certain types of medical care.  But the GI we have now is completely different.  While she is not as familiar with finding root causes as the holistic community, she knows what she knows and she respects our wishes for Wren. 

Get ready to play the middle man.
We want the best care for our kids, and that means striking the balance between the crunchy granola tribe and the hard core medical peeps.  Generally, these people don’t get along.  Our pediatrician hates Children’s, where our GI is located, and thinks specialists don’t consider the whole body’s connection when treating patients.  The GI gives me the raised eyebrow look when I mention things like chiropractics, flax seed oil, and liver cleanses using homeopathic drugs.  That means D and I play the role of the kids with divorced parents: visiting both places but never talking about either “parent” too much to the other one lest the “parents” start accusing us of loving the other one more.  It sucks.  It’s not the way medicine should be, but it is the reality we live in.  We’ll manage.

Today after Wren’s appointment we took a picture in front of the big Christmas tree outside of Children’s and then Wren cartwheeled down the grass out front.  

She doesn’t fully understand the impact of what happened.  We never told her about the remission fiasco.  She worked too hard, and there was no way we were going to tell her it looked like we’d come up short yet again.  No way.  She just knew her GI was happy and her mommy was happy and she could poo for the first time normally in months.  She didn’t have to get a blood test and ate trail mix for lunch.  It was just a good day for her in general.

I don’t know why this route was the one we had to take to get to where we are.  It’s not a question I plan on asking often.  Where we are is good.  That’s enough. 

Tuesday, December 8, 2015

The Joy of a Surprise Season

My kids have been outside every day in shorts and sandals.  We’re having 60 and 70 degree weather in December.  It’s a bit of a shock since two years ago I remember being stuck in our house for days due to ice and snow.  When we finally ventured out, stir crazy from being locked in with four kids, we skidded down Legacy, finally coming to a complete stop as cars in front of us slid off the road.  It was the first time we decided leaving the house might not have been a good idea.

But right now the sky is a clear blue, the temperature comfortable.  As long as the back yard is accessible, everyone is fairly content.  It’s a change.

I’m finding that about these somewhat peaceful seasons; they pop up out of nowhere.  They’re not always free of struggles either.  We still have to wait for the thermometer to get past fifty before everyone spills out the door.  On occasion the wind still feels strong enough to knock us down.  But the sun is bright, and the focus on that is what makes everything feel different.

We’ve been focusing on the Son a lot this month, as we try to do every day.  With Advent here, I committed to moving through this Christmas/birthday season slowly, consciously.  That in itself has helped me reframe some of our struggles.  Wren is heading back to the GI tomorrow, on her birthday.  That’s not the best news, but we have insurance and doctors to help.  Sammy still sometimes struggles with the middle-child-only-boy blues, but it’s happening less and less.  The twins are, well, two.  Some days are good.  Other days, like last Tuesday, D comes home and I escape out the back door after telling him in barely coherent English, “I do not want to talk to or see or hear any of the people in this house.  Can’t do it.  Shutting down.”  I went to the library where quiet is real and beautiful. 

After a four-and-half-year fight with insurance companies, I’m finally getting gene tested for the Celiac genes to see if I also carry the link.  It happens Friday.  That means I spent yesterday making three long phone calls with children underfoot while I worked out the specifics.  Six months ago there is no way that could have happened.  All of my kids need food, or to poop, or to talk out big feelings the minute I pick up the phone.  It felt like a small miracle that these phone calls happened, and it was. 

After over a decade of not being published due to not submitting any work, two pieces I wrote were published this fall.  More than anything, I’m enjoying writing again, making time for it, seeing it as worth my time even with all the other demands.  The novel will be finished in the next six months.  Progress. (Check out published work here and here.)

D and I have also found some community.  We knew with four young kids that being embedded in community was going to be hard.  It has been.  But lately the Lord has just been delivering people to us, wonderful gifts.  For the first time in years we are having friends over for New Year’s Eve.  All our kids will run freely and we’ll attempt to chat with other adults.  D and I are also going on our first date in almost two years this weekend.  I’m thankful.

I know there is a trend about picking a word for the year around January 1st.  I haven’t ever done it, but I like the idea.  Instead of waiting until January 1st, I decided to choose one a couple of weeks ago when we were in what felt like the throes of never ending madness.  Gratitude.  Being grateful.  Even as things were crazy and I was feeling overwhelmed, I knew I should be grateful.  So I slowed down.  I made some intentional changes to our day.  I started trying to give myself grace knowing that is the only way I can give it to others.  And pretty soon, it felt like things changed. 

That’s not to say every day is good and everything is easy. After retrieving Wren’s Celiac blood work for the last three years before her test tomorrow, I then had a mild panic attack trying to make myself look at the pages, so angry am I still about this remission mess.  It’s just that now I’m trying to recognize those times and call them out, still finding ways to be grateful to God. 

I know dark days are inevitable.  The cold will come back and will sometimes feel impossible to bare.  During this season of waiting on the anniversary of the birth of the Christ Child, waiting for the return of Christ, I’m also storing up gratefulness, making it a habit I will carry with me when the seasons change.  And I’m enjoying the now, the crisp days and the sunlight on my back.