Advice for Bloggers and Also a Titus Update

Here’s Titus shmushing his ears down with my rad headband.

The behind-the-scenes talk from bloggers about how to use Facebook to get an actual factual response from readers has been mind-boggling. There have been so many tricks to the trade, and they apparently change from day to day. Link only. Text only with link in the comments. Photo with quote.

Readers, did you know these conversations happen? Does it make you feel like punching out lightbulbs? Me, too.

Well, listen up. I’m about to give some serious professional blogging advice. Bloggers, when you link to a blog on Facebook, add the link using only your right hand to type. The tongue should stick out to the left. Set your laptop down. Do a few pirouettes, and then press Enter. That should do it. My friend Lora Lynn thinks you should also spit, but that’s debatable because she’s from Alabama, and you know what that means.

If anyone would like for me to visit your conference to give you a special talk about how to be a good blogger, my contact information should be above. No really, Facebook says things are about to get more normal, which is exactly what I’m waiting for.

I begin this post with my regular sort of goofiness, because this is what I do when things start to feel too serious. If you get to be around me ever in real life, you’ll learn quickly that I am the funniest person I know. Usually when you’re around someone funny, you’re also around someone who teeters on sad. For the record, I’m usually never funny or sad on purpose.

Right now, there is a styrofoam container on top of my desk. I am supposed to put dry ice in it to ship a lovely urine sample to Mayo Clinic because Titus tested positive for a screening for a creatine metabolic disorder that can do very scary things to him as he gets older. We’re to do the screening again, and if that one is positive, too, we’ll have a strong hunch that it’s what he has. A blood test from there would tell us exactly which kind and what to expect.

I’ve got a constant stick in my hand trying to beat fear-of-the-future back a few steps so I can just go about doing normal things. I should have sent the urine sample in three weeks ago, but the box is only going in the mail today. We won’t have results back for another 2 weeks.

In the meantime, I don’t think I’ve ever enjoyed anything more than I enjoy this child. I enjoy how all the boys enjoy him, too. Last night he wouldn’t go to sleep. When I scooped him out of the hall, he squeezed me and stuck his face deep into my neck, his sweet skin on mine. As I rocked him in my arms standing next to the bunk bed, he reached up, and Isaac reached down. I rocked gently, and they held hands. No one said a word.

I have found myself in this liminal space of a motherhood that recognizes how little control there is to wrangle. Ignoring the styrofoam container is a short phase I’ve allowed myself, a time to recognize gravity, not just for Titus but for all of us. My Ian, too, just wanted someone to lay with him. He cuddled me so close that I couldn’t help the constant stream of tears. I pray for them so hard sometimes. I know what it feels like to beg. Everything is tinged with sweetness, even all these things we have to let slip away.

Seth and I have decided to take a trip this summer, and I’ll tell you about it soon enough, but it’s a trip for us, for our marriage. It’s over the top. It’s a thing so beautiful to think about that it literally makes me school-girl giddy. I want to travel the world with him, and I’m going to.

I am numbering days, and such things makes Facebook the goofiest thing I’ve ever heard of. Even still, I love to like you there. I can’t help it.

My real earth-shattering advice to bloggers and everybody is to find a way to feel the gravity. Feel the gravity, number days, pull the tension between joy and sadness, and when it feels heavy, break Facebook rules and watch/read something that makes you laugh – even if it’s just a little bit raunchy.

For more blogging tips, do not follow me on Facebook. I’m making all this up as I go, but I am bound to have fun on the internet again, so as to help the internet not be dumb.


About me


A Haines Home Companion: On Limbo
February 27, 2014
A Haines Home Companion: Christmastime
December 14, 2012
these days were written
November 20, 2012
The Feeding Tube
July 19, 2012
Share the Beauty
October 01, 2011
on writing: stop for the music
September 19, 2011
why I’m here, to peek at the cusp of dreams
September 13, 2011
Sara Sophia Jingle
November 10, 2010
where the muse may be
November 09, 2010


Reply January 23, 2014

I can't imagine and don't want to, but I can pray and want to, do, and will.

I've laughed so hard today. First of all, my daughters (3 & 4) are slender things until they put on snow pants; then their hips look so unnaturally wide from the back that they look like marshmallow puff men or Gene Wilder Oompa Loompas. I mean no disrespect to anyone with this real-life body shape, and I hope to not scar my daughters for life, but oh my word, I can't help it; I die laughing.

Then I saw this:

I tried to imagine it for my husband's desk at work and, again, I laughed so hard I had to cross my legs (because you know, four kids later).

But the hardest I laughed was over something I saw on facebook, which cheers me a little because I have a love/hate (mostly hate) relationship w/ facebook, lately. But this beautiful young girl I know was obviously hacked, and her status updates said things about cheese sticks #dairy #diarrhea, farting, gas, etc., and I guess you'd have to know the girl, but I laughed until I had tears streaming down my face.

So it was a good (rare) day, and when I pray for your family, I'll remember to pray for hard laughter.

Lora Lynn
Reply January 23, 2014

No, I said "spit due northwest." The precise direction of the sputum renders it perfectly respectable. As anyone from Alabama would know... Oh, wait....

Also-I snorted coffee all over my iPad this morning in a tribute to my home state, I guess, and to your funny.

Ship that pee, girl. We will hold your hand.

    Reply January 23, 2014

    You said "sputum."

    That was funny.

      Ann Kroeker
      Reply January 23, 2014

      She also said "Ship that pee, girl." That was funny, too. But I agree with you, Seth...there's no better comment than one that includes the word "sputum." I've gotta try that sometime soon. Oh, wait....I just...did.....

Reply January 23, 2014

You would be able to sandwich heavy mama burden between facebook fluff. This strange internet thing makes me feel like I know you, and I don't know whether to laugh or cry when I read things like this. Usually that means pray. So, I will. This Canadian gal is lifting you and your boys up this morning. Peace.

Mary Clare
Reply January 23, 2014

Sending you and your family love and prayers, asking God to keep his hand on your shoulders and hold you in His arms whenever you need Him to. Thank you for your openness and letting us in to your life. Many blessings to you all

Reply January 23, 2014

It's a part of my story I don't share - but I know this. Somehow the funny and the putting off is how we cope. Sometimes it's even doubt and fear. But always He is there. Praying for you and with you.

Reply January 23, 2014

Facebook? What is that? I don't try and keep up with it all {wears me out}. Been thinking about Titus lately, so updates are good. :) And grand adventures with hubby are always priceless.

Tara Livesay
Reply January 23, 2014

Oh Guys,
Thank you for the Titus update. I am proud of you for trying to beat back fear with your stick, but should you need to put the stick down and rest for a minute and feel things, that is okay too. It's so hard to have a sick child. It is even harder to not know what that might mean. We are carrying you in prayer - in this insufficient way - from this frustrating distance. XOXO

Reply January 23, 2014

holding y'all in my prayers
and trying to imagine what that trip is going to look like for you
He will give you beauty and joy

Shelly R
Reply January 23, 2014

I love your goofiness, when things get too serious. Kindred spirits you and I in that way. I know the scary wait of the unknown. I know it's hard, but it's ok to send the pee. :) this family a few states a way is praying you through. Always praying for your family. Your stories ring so close to ours, so we tucked you under our wings a long time ago. Hugs and prayers for you and that stick stays strong. ;)

Reply January 23, 2014

I shouldn't be laughing so hard at the FB comments! Preach on, girl, seriously. I've given up trying to figure it out, and FB's credibility on the matter is totally shot.

Lifting you and yours in prayers as the results come back...I remember that liminal space between the not-knowing and the knowing, and the thing is, we still dance in both moments, that shushing side to side bounce of helping a child rest, that giggly bounce around to that ninties song we won't admit to knowing, that heavy sobbing on a husband's shoulder in the middle of the living room in the wee hours of the night on girl. The names and the diagnosises may change, what it means for your family will change multiple times over, but through it all, you'll dance. And it will be a beautiful thing. You and Seth and the kidlets? You are loved, so very much.

Karen Yates
Reply January 23, 2014

Holding this with you. Not the lame Facebook part. The gravity part. The full-bodied life. So glad we are friends.

Reply January 23, 2014

Amber! You crack me up. And praying for that sweet lil Titus.

Reply January 23, 2014

I'm doing a handstand while nursing a sick babe & howling--maybe that will work. Serious--I hope & pray you find answers for your sweet Titus boy. Godspeed! Kamille

Valorie MacDonald
Reply January 23, 2014

Thank you for the update! I was just this morning (does 4 a.m. count as morning??... :/ ...) sharing your story with my husband. We're starting a prayer board at our little home church and Titus, along with all your boys, you and your dear hubby are going on it! Your post made me cry, then laugh, and laugh some more, and shake my head and pray...and laugh again...
Oh dear friend.
Friend whom I've never met, yet feel such kindred.spirit kindof... stuff with!
Friend for whom my heart has ached, for whom tears and prayers have flowed freely.
Though I have never heard your voice, I hear your heart.
Thank you for spilling out all the colors of your life on the page for us.
The gaping void created by pain; the splashes of color in wit and self.deprecating humor.
The process of the awkward formless lump of clay moments gathering substance
and slowly taking shape as you allow HIM to determine the outcome:
Choice, heart attitude, words that breathe the light of life and joy into your abyss.
It moves and inspires us, scolds us just a bit if we need it. It reminds us
that we are not alone in this mess of being human.
Thank you.

Lynn Morrissey
Reply January 23, 2014

I love your sense of humor, Amber, even when I don't completely *get* it (like my mom who laughs at jokes, and then asks us what we just said! :-) ) It's just that I don't do FB, so you may as well be talking Greek. But I see this post as laced with God's hope.....hope that you are finally finding some answers, and I can't imagine how scary they seem. But God is the God of all hope and his HOPE trumps disorders of every kind. It's my prayer that just knowing something brings a kind of relief (it did for me, when Mayo could finally give me an answer -- after 18 yrs of not knowing). And it is my prayer that God brings HIS gravitas (HIS WEIGHT, WHICH IS HIS GLORY) smack dab into this situation with dear, sweet, precious Titus, and that He brings healing, help, and yes, more hope that his one small body or yours can contain. You are so dear, sweet Amber, and I am praying for your boy, and now, too, for your joy journey with your beloved.


Tina Carothers
Reply January 23, 2014

It's funny to hear you guys are listening to Cat Stevens. When Paul and I were dating (1976), we had an 8 track that played Cat Stevens Greatest Hits over and over. I guess it's true " what goes around, comes around."

    Reply January 24, 2014

    Mama! I like it when you comment. :)

Ann Kroeker
Reply January 23, 2014

Amber, when my husband had to go through minor surgery to remove a wire from a previous surgery (15 years earlier), he had this big hole in his chest that we had to clean and cover with sterile stuff. We had all kinds of issues--literal issues, in fact, as it would gush blood. Though relatively short-lived, the whole thing was so stressful, disconcerting, horrifying, bloody, messy, exhausting. We relieved the tension by making well-timed Iron Man jokes. I had to look up the right terminology to start referring accurately to the ARC reactor and electromagnet chest piece, which got a lot of mileage. The laughter got us through. And the bleeding stopped. And the hole closed up.

    Ann Kroeker
    Reply January 23, 2014

    Perhaps I wasn't clear about the timing (not that it matters, but I feel compelled to clarify): the minor Iron Man corrective surgery was just last year. The original surgery that required wire closures that created the problem took place 15 years prior. The original surgery was truly major surgery (heart valve replacement); the second surgery was minor (but sure did seem major with a big open wound in the chest).

    Reply January 23, 2014

    This needs to be a post, Ann. I love that so much.

the Blah Blah Blahger
Reply January 23, 2014

Whoa baby, look at you go!

Sarah Silvester
Reply January 23, 2014

Hi Amber, this post was funny and sad and wonderful and terrible and I mean that in good ways. I mostly lurk around here but wanted to say how I pray for Titus and you all and have followed his story from the beginning. It is so beautiful to see him be such a joy to your lives and my mamas heart breaks every time I read more about what could be going on with his health. Strength and peace to you and Seth and your boys xxx

    Reply January 23, 2014

    THank you so much for this, Sarah.

Reply January 23, 2014

Such a journey. A hard, rough, tough, God is near us journey. xxx

Kelly @ Love Well
Reply January 23, 2014

I love your goofiness, and for the record, I think it's a light in the darkness. Go ahead and mail that package, because you are not alone. Not in your laughter or your pain.

Reply January 23, 2014

i did a little tiny gasp when i saw that you wrote a titus update because i sort of blog-stalk the moms who still have fruit-snack-encrusted cars seats in their mini-vans. it's a vicarious thing because i miss rocking my boys so much. and i prayed for you just now that you could put down the stick while you rock that little guy....

Ashley Larkin
Reply January 23, 2014

I wish I told you more often how your words stir my soul, Amber. I carry you with me, you know. Loving the beautiful, ridiculous hope you are finding in all this and am praying for you, mama, and your precious Titus boy. So happy you'll be getting away with Seth -- what a gift that will be.

Tanya Marlow
Reply January 24, 2014

I'm felling lots of things. I'm feeling all "me too, me too!" on the funny/sad thing. I am super funny in real life (but not so much on the blog, cos you can't read people's faces to see if they're laughing. And someone might get offended. Or something...) sometimes I feel the need to blog something totally superficial, just to say, 'hey I'm not all MISERYDOOMGLOOM all the time, you know?'. Anyway. That is such a genius observation that the funny person is usually also teetering on sad.

I'm feeling really really pleased and excited that you and Seth have a holiday coming up. That is SO good. So essential. I'm hoping all kinds of happy things for you.

And I'm just feeling the weight with you of that little pot with a potentially big verdict. Praying for God's kingdom and glory and goodness and mercy to pour upon you all. Right now. Amen. Xx

Reply January 24, 2014



Annie Barnett
Reply January 24, 2014

Reading this just this morning and pushing into that tension too, with prayers for Titus and you all, and lots of love too.

Reply January 24, 2014

Praying with and for your family Amber...
I feel that catch in my throat (for you). We've been down the testing road before (glycogen metabolic) and I so remember the waiting and unknowns...and suffocating fear... because you just love them so much.

Reply January 24, 2014

"I am bound to have fun on the internet again, so as to help the internet not be dumb." - I love this, and it was very timely today!

Reading your words, I began to wonder if we're related... except for the fact that my husband is the funniest person I know (The only evidence that could ever make me pause to even consider Darwin's theory. He is, after all, part monkey). It's near the top of my list for reasons I married him. ;)

Knowing what it's like to beg - Probably the hardest hitting statement for me. Truly. I stumbled into your blog today via Seth's guest entry for "Five Minute Friday" over at Lisa Jo Baker's place. So glad I did! I'm hooked!


    Reply January 24, 2014

    Oh Sam, I'm so glad you came. Thank you. :)

Diana Trautwein
Reply January 26, 2014

Loving you all, praying for you, happy to read of joyous moments amongst the bittersweet ones. And that boy is just too precious for words.

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