How Are You Feeling?

The theme "Love Your Feelings" didn't inspire me, at first.  I'm not loving my feelings lately.  The verse I kept thinking of was Ephesians 4:26, "Be angry and sin not..."

Suddenly, it clicked for me in a way I hadn't thought of before.  I've always thought of feelings as bad, dangerous, even.  Feelings can get you into trouble.  Acting on your feelings is frowned upon.  But the Bible says to be angry and sin not.  It doesn't say not to get angry.  What if we substitute other feelings?  Be sad and sin not.  Be frustrated and sin not.  Be disappointed and sin not.

In fact, the only feelings I can think of that we're told not to have are anxiety, "Be anxious for nothing..."  (Philippians 4:6), jealousy, "You shall not covet..." (Exodus 20:17), and hate, "Whoever hates his brother is a murderer..." 1 John 3:15.

So feelings, in and of themselves, aren't the problem.  It's how we act upon those feelings.  That was really freeing for me.  I've been feeling horrible for the way I feel about Luke's challenges.  And I think the added guilt makes it even harder for me to align my actions with what they should be.

Here's my reality:  I feel like a lousy mom for not connecting with Luke.  Somehow, I have this idea that a perfect mother wouldn't need any sort of validation from her child.  Perfect Mom wouldn't care that Luke never smiles at her, and in fact, often starts whining and hitting himself in the head when she comes near him.  Like some automaton, she would just continue to smile and serve and hum and bake and birds would chirp in the background.

Well, that's crap.  I think we've already established that I'm not a perfect mom.  Honestly, I don't even want to be.  I think it would be a disservice to my kids, in the long run.

I'm feeling overwhelmed.

I'm feeling terrified of the future with Luke.  I don't want to spend the rest of my life taking care of somebody who doesn't even like me.  I'm feeling regrets.

I'm feeling a faint glimmer of hope, which scares this fragile heart, that we might be getting close to a diagnosis.  I'm feeling guarded.  I was finally coming to terms with the whole "maybe we'll never know what's wrong with him" thing, and I'm afraid to get my hopes up because I don't want to be let down again.

I'm feeling like everyone thinks I'm horrible for not being madly in love with my child.  I feel sorry for Luke that I don't have the same affection for him that I do for Katie and Hannah.

I'm feeling a huge sense of loss for the spunky little boy I was hoping we would be parenting.  He may have only existed in my mind.  He may have been a composite of the cute pictures of other people's boys from China, and memories of my older boys at age 2.  But the smallest things set off a longing for "that boy" some days.  Hearing the garbage truck come down the street and wishing that I could could holler, "Lukey!  Garbage truck!" and have him come running over and climb up to see out the window and point and say, "Truck!" and be excited.  Meeting another mom with a boy the same age and knowing the two of them will never play together.

I guess the realization that it's OKAY to have these feelings comes with the responsibility not to wallow in them.  I don't know if I'm at the point of loving my feelings quite yet, but at least I'm acknowledging them.

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Late Weekly Wrap Up #20

Sorry this is late!  

Brianna is participating in a knitting Olympics on Ravelry.  I gave her a bag of yarn that's been sitting in my sewing room since before Christmas.  I think she purred.  She made a cute panda washcloth, but it's hard to photograph the design, since it's all black.  

The good news:  we got some rain (we have severe drought conditions here).  The bad news:  it was in the house.  

Some people like to do one project at a time.  Not us.  We like to batch our disasters.  (Ask me about 2011, the year 3 of my kids had surgery.)

Eli's EEME project came.  

This is always a highlight for him.  

And frequently the other kids gather 'round to watch him build, too.

This picture shows Eli completing the circuit through his own body to light up the light on the breadboard.  (I've even picked up a little vocabulary from EEME.)

Back to the upstairs bathroom project.  This week we got the floor in!  Once this bathroom is finished, we'll be riding the potty train with Katie.  

There is one thing I dearly love.  One thing that is a central part of our day.  Naptime.  Sometimes the kids aren't as cooperative as I would like.  But mostly, they just spend a couple hours being reasonably quiet so I can recharge.  Occasionally, however, I get this.

And this

And this.  Yeah, they weren't tired at all.

"Mom?  Do you have any notebooks??"

Do I have notebooks?  Does Staples have amazing 5 cent notebook deals every single summer?  Of course I have notebooks!  

Eli and Katie were wearing her magnetic blocks as earrings.  Which seams ouchie to me, but whatever floats their boat.  

Roof being ripped apart.

Valentine's Day!  We have a tradition in our family of conversation heart math on Valentine's Day.  The nice, big graph paper came from my friend Erin.  It's perfect for this.

Katie wasn't at all sure what was going on.

Jack is an old pro, graphing by color, then by saying.

I helped Katie graph her hearts, and she got more into it.

Even the birthday boy graphed his hearts.

And then they ATE them!

Probably their favorite part.  

Roof all better.  I hope.  

Wow, looking back at our week, it looks like we didn't get any homeschooling done at all!  Yikes!  I promise, we did, even if there aren't any photos of it.  We're still working on a foreign language program review, and we did some standardized testing this week, and Eli started a new spelling book.  Hopefully, we'll have more "schooly" stuff to share next week.  Never a dull moment around here!  

Linking up with Great Peace Academy and:  

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Doll Clothes Superstore

Hannah and Katie got doll bunk beds for Christmas.  They have similar dolls, and I kept meaning to make them some cute doll clothes, but somehow in the chaos of life, I haven't been in the sewing room.  Fortunately, I ran across a fantastic review opportunity for Doll Clothes Superstore.

Overwhelmed with fun choices, I finally selected these matching dresses for Hannah and her doll.   One of the things that's great about Doll Clothes Superstore is that the matching doll dresses come in different sizes, to fit whatever doll your girl loves best.  They also sell accessories, such as shoes, socks, jewelry, and glasses for dolls.

Hannah and Katie and their dolls had a fun little tea party together to celebrate new dresses.  I was celebrating, too.  These dresses are nicely made.  Since I sew, I know good work when I see it.  The girl dresses do run big, but I was cautioned about that.  Still, Hannah, who usually wears a size 6, will be able to wear this size 5 dress for a good, long time.

When they get a little older, I'll be sure to come back to shop for American Girl doll clothes here.  They also sell clothes sized for Bitty Baby, My Twinn, Barbie, and Cabbage Patch Kids dolls, too.

I'm super excited to offer my readers an exclusive 10% discount code!  Enter blesseddcs at Doll Clothes Superstore, no minimum purchase required.

You can connect with Doll Clothes Superstore on Facebook, Twitter, or visit their blog.  

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Vinyl Disorder

Disclosure: I got this product as part of an advertorial.  

It was an exciting day in our house with this review package arrived!  Brianna has a whole board of fingernail art ideas on Pinterest, so I knew she'd be up for trying out Vinyl Disorder's nail decals.

We received hearts and stars from their extensive selection of vinyl nail decals.  These fun little stickers are designed to make it easy to create salon looks at home.  Paint your nails, apply the decals, then add a clear topcoat to help them wear longer.

Brianna applied the stars over purple sparkly nail polish.

I really wanted to like these.  So much so, in fact, that when Brianna had removed them all in a matter of hours, I thought the issue was her, not the decals.

Until I tried the heart ones on myself for Valentine's Day.  I think maybe the iridescent material is a little too thick, because they did not adjust to the curve of my nail well.  Since I didn't have any clear nail polish on hand to help keep them tacked down, they ended up snagging on my hair and everything else I tried to handle.  Suddenly, I understood why Bri had taken them off.  

While the nail decals ended up not working for us, I'm impressed with the huge selection of vinyl wall art that Vinyl Disorder offers.  This quote was my favorite.  And they also have car decals!  I've always wanted to do one of those obnoxious stick figure families across the back of my van.

You can connect with Vinyl Disorder on Facebook and Twitter.

I received one or more of the products mentioned above for free using Tomoson.com. Regardless, I only recommend products or services I use personally and believe will be good for my readers.

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Gene Miles

When Paul and I were newly married, the church we attended had a Men's Backpacking Trip.  My father had been to the place where they were headed before, and he told the guys, who were starting to tire out, "It's just across this meadow and over that ridge."  

 
Over and over and over.

It seems the place he remembered was farther away than he thought.

And so the term, "Gene miles" was born.  It refers to anything that turns out to be farther or more difficult than we expected at the beginning.

Eight months ago yesterday, Paul talked me off the ledge when I was panicked in a hotel room in Nanchang, Jiangxi.  "Just bring him home; we'll figure it out," he assured me.

Across this meadow and over that ridge.  

So we brought Luke home and took him to the doctor, who ordered some testing so we could figure out what was up with him.  Bloodwork, urine sample.

Across this meadow and over that ridge.  

"Hmm, nothing too weird in the lab results, take him to Berger Rehab for an assessment and see what they say."

Across this meadow and over that ridge.  

"Okay, so he's profoundly delayed.  Let's send you to The MIND Institute and see what they think it is."  

Across this meadow and over that ridge.  

The MIND Institute said, "He's not autistic, although he's "at risk" for an autism diagnosis in the future, because the criteria changes as kids get older."

And the doctor said, "Well, let's try a pediatric neurologist.  Maybe he can figure it out."

Across this meadow and over that ridge.  

And the pediatric neurologist shook his head at us and ordered an EEG and an MRI and more bloodwork.

Across this meadow and over that ridge.  

Once all the results were in, we were no closer to an answer than before.  Finally, he suggested that we go to UCSF Genetics and see if they can help us.

So yesterday, exactly 8 months after Luke was placed in my arms, Paul and Brianna drove him to San Francisco to see what they had to say.

The team came up with a 3 tier approach to additional testing to see if we can pin down a diagnosis (and hopefully a prognosis, as well).

Tier 1 involves more blood and urine testing.  Although we've tested for arsenic and cadmium and mercury and all sorts of other fun things, this time copper is on the list.  One of the docs noticed the patchy look of Luke's eye whites (which I've pointed out to other physicians) and said, "Copper poisoning?"  There are also some metabolic issues they're trying to rule out.  You may recall he's had an elevated liver enzyme on previous bloodwork.

Tier 2 involves a spinal tap.  Which ought to be worth another medical patch on my mama scout vest.

(yes, he is flipping me off)

Tier 3 is the one I am most interested in.  Genome mapping.  I think once they get a look at Luke's actual DNA, we can finally find out what makes Luke the way he is.

Paul took this picture for me yesterday, while they were down in the city.  We don't have answers yet, but we do have a glimmer of hope that maybe those answers are...  Across this meadow and over that ridge.  

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