On Dancing: A Titus Update


When I last updated here about Titus, my heart was churned up like the inside of a wave, and I thought we were rolling into some awful news. We went for a sweat test for which Titus didn’t sweat, so my 7 hours of driving that day had felt so wasted. I had overwhelming fear that Titus had Cystic Fibrosis and that I was taking him home to starve. I cried as I strolled him out of the building, my baby who eats and eats but never gains weight.

Then on the drive after calling my friends and dumping my heart and after working through it for an hour with my amazing doctor friend, I threw my hands in the air, and I gave up. It wasn’t a beautiful moment, like in the song I Surrender All. It was more like a teenage girl stomping to her bedroom and slamming the door shut, knowing Daddy’s going to do what he’s going to do, and that’s the end of it.

I needed music, turned on Pandora, and All Sons and Daughters’ Oh How I Need You started playing.

Lord I find You in the seeking / Lord I find You in the doubt
And to know You is to love You / And to know so little else
I need You / Oh how I need You

It’s a song that begins seriously and contemplatively, and then it rolls into a song that makes you dance. The next morning at breakfast, I was alone with Titus and a pile of dishes at the sink. The other three boys were with family. I found the song again, put Titus in his high chair, and put on my long purple dishwashing gloves. Titus began fingering at his little bites of fruit, but soon I had backed away from the sink, clapping my hands together, tapping in my house shoes, eyes closed and pouring. After a minute I looked up at Titus’ face and burst into laughter. His mouth was open with food in it, mesmerized by my crazy.

I begged that this would be his first memory: the wet gloves, the penguin pajama pants, the tears, contagious laugh, and a wick in the candle waving fire. There has been more doubt in this season than in any other, but I believe. I know it now. If this life experience with all its pain isn’t to make me holy, if it isn’t to show us that there is dancing in the morning, then it would be true that God isn’t real.

After the laughter, I weighed him on the scales, and without any explanation for it (other than all the prayers you lit when we left for that sweat test), Titus had gained about 5 ounces since the day before. It’s been 2 weeks since then, and he’s kept most of it. He’s suddenly begun to talk, too, and you have to see the way he dances. He dances like it’s what he was made to do.

Our doctor friends have asked us with all the love in the world to have a Merry Christmas. Doctor’s Orders! We’re not testing him again for cystic fibrosis unless his weight curves down. We’ll re-evaluate in January, and until then we’re relaxing, and I really feel like I’m watching his little cheeks round out. Either way. Either way, though, there will be dancing.

*UPDATE to the UPDATE*

 I wrote this post on Sunday. Yesterday we weighed Titus, and he had gained a few more ounces! I cried, just so encouraged.

Only a little bit later, he started acting uncomfortable, and I realized as I changed his diaper that a hernia situation was getting bad. We rushed to our pediatrician clinic, and the doctor confirmed it was becoming incarcerated, but he was able to push it back in through Titus’ bloody murder screams. Once back in, he was good as new, but still, he has to have surgery before the end of the week.

Can we say roller coaster? My Mother-in-Law said I was talking about it all as if going to surgery were a trip to the grocery store. I guess I just laugh and do what’s next. What else is there to do once you’re tired of pitching fits? Trust is the only sane option (though some could argue that my laughter has been accompanied by a crazy eye.)

Thank you, friends, for praying.

amberhaines
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41 Comments

Jess
Reply December 4, 2012

Prayers continue for your family and Titus. So good to hear about those few ounces, and so sorry you will go through another surgery . ..

Tanya Marlow
Reply December 4, 2012

Oh boy... Roller coaster is about right. I'm loving that you're hanging in - and thank you for writing so openly about the process. It is spurring me on in ways that you will never know. Thank you.

r.elliott
Reply December 4, 2012

joy...joy...rejoicing with you all...and may you have a wonderful...joyous...fun Christmas~ blessings~

Kelly Sauer
Reply December 4, 2012

Oh my. Deep breaths. I just have deep breaths here.

Southern Gal
Reply December 4, 2012

Roller coaster rides aren't always fun, are they? Praying things will calm down and the Lord will heal that sweet little boy.

(I can so see that face when you realized he was watching you!)

Elizabeth
Reply December 4, 2012

Oh friend. Praying...and thanking you for allowing a community to come alongside you to encourage..be encouraged and have the merriest of every days during Advent.

Bekka
Reply December 4, 2012

Soooo happy to hear this mostly good news! Hoping and praying for good results and speedy recovery from the surgery. Blessings!

Blanca
Reply December 4, 2012

Praying for more ounces, for surgery to go smoothly, and for lots more dancing.

Jennifer@GDWJ
Reply December 4, 2012

I'm praying here, Amber. What a rollercoaster, indeed. Take care.

Courtney Osborn
Reply December 4, 2012

Oh Amber I love you. Praying for surgery this week and encouraged by your words. Keep dancing around the Christmas tree!

Stephanie Precourt
Reply December 4, 2012

Oh I'm covered in chills. I've been through those highs and lows and sea of doubt, and still find myself there sometimes, but there is always the other side and I pray you're over there for good.

Steph

Jessica Y
Reply December 4, 2012

Halleluiah!! 2 verses popped to mind right away!

"You have turned for me my mourning into dancing; you have loosed my sackcloth and clothed me with gladness"Psalm 30:11
"As they go through the Valley of Baca they make it a place of springs;" Psalm 84:6

Love you girl.

Kelly @ Love Well
Reply December 4, 2012

Oh sweetness. I'm laughing at the craziness of it all, because really, what else is there to do?

I saw this CS Lewis quote yesterday and about burst into tears because of it: "God has not been trying an experiment on my faith or love in order to find out their quality. He knew it already. It was I who didn’t."

Sending you love, friends. So much love.

    Seth
    Reply December 4, 2012

    "...because really, what else is there to do?"

    When I found out yesterday about the hernia surgery, I laughed. No joke. Then I said, "well... of course."

SortaCrunchy
Reply December 4, 2012

Welllllll, shoot. Shoot, shoot, shoot. That's for the next surgery.

But everything else? The dancing and the crying and the few more ounces? I am dancing beside you, sweet friend. Hands raised and teary-eyed.

Shelly Miller
Reply December 4, 2012

Praying today and thankful for laughter, even when it comes with a crazy eye. :)

erika @ the life artist
Reply December 4, 2012

For one reason or another, I am always on my knees in this space - whether it be from wonderment or curiosity or hunger or just a simple "oh, mercy my God".

    erika @ the life artist
    Reply December 4, 2012

    Or any number of different things unmentioned. Today, I bent my legs for wonder and because I know. I know what you speak of.

Robin ~ Pensieve
Reply December 4, 2012

"If this life experience with all its pain isn’t to make me holy, if it isn’t to show us that there is dancing in the morning, then it would be true that God isn’t real."

Rejoicing in the dance, enduring when the moves go a little Elaine Benis (Seinfeld reference, and if you don't know it, then this sentence makes no sense at all).

I was spying for an update today, not wanting to worry your inbox with one more thing, and yet a little twitchy when it's been too long. Nothing new was there before, thankful to learn more now.

I love you, friend.

Diana Trautwein
Reply December 4, 2012

So happy for the ounces!! And apparently, they've arrived just in time for a different sort of assault on his little body. Many blessings of peace and HEALING as he has this surgery this week. Love you all - and please, God, DO make that purple-gloved singing/crying/dancing mama the thing Titus remembers. What a fabulous first memory - mom's crazy . . . in love with me and with God.

kendal
Reply December 4, 2012

i drink in these posts, thirsty to pray for you all....

HopefulLeigh
Reply December 4, 2012

Glad to hear about the weight gains. I'll be praying about this surgery. Oh, Titus-boy.

Dancing with you, friend. Always.

the Blah Blah Blahger
Reply December 4, 2012

Oh, sweet monkey...sending you so much love and many prayers as you get through this next phase!

Lisa-Jo@thegypsymama
Reply December 4, 2012

I LOVE that when I read this now I can actually picture your sink and your Titus in his high chair and the cookies stuffing out his cheeks. No fancy words here. Just glad to be your friend, Amber Haines.

Sarah Bessey
Reply December 4, 2012

Love you and love that wee little man. On constant watch here.

Megan (FriedOkra)
Reply December 4, 2012

I kinda want to see the penguin pajama pants now.

You know I'm praying. I love the good news of this, and hope the surgery just makes things better for that sweet boy. So much love.

Kristen@Chasing Blue Skies
Reply December 4, 2012

Dearest Amber, you are some kind of mama, you know that? The *best* kind. I will keep my knees to the floor for you and your precious boy!

{And one of my sons had to have hernia surgery when he was a wee-watt. While I would say it is more of a big deal than a grocery trip {smile}, it will probably feel like a cake walk compared to your last several months. Will keep praying!

Ashley
Reply December 4, 2012

Continuing to pray for your precious, dancing little boy, his purple-gloved, crazy-eyed mama and the rest of the fam. May this surgery go smoothly and easily. Thanks for sharing with us the dance.

Ashlee
Reply December 4, 2012

My baby had hernia surgery when he was 8 weeks old....we were covered in prayer, in and out of there in six hours, and he's good as new. Praying for the same for you!

giacomo conserva
Reply December 4, 2012

yes, praying

Teri @ StumblingAroundInTheLight
Reply December 4, 2012

Oh yes! and oh no....
Oddly, our little 2 year old had a 'hernia situation' tonight! We were ready to head out the door & rush him to the doc, when he suddenly got better, and all the pushed-out area sorta retracted. A temporary relief, according to the on-call doc - and yes, we'll be looking at a surgery in the next week or so as well.
Will be praying for your Titus - as we pray for our little Nekoda!
(who incidentally has MASSIVE food allergies, was labeled with 'failure to thrive' as a baby, and despite bouts of vomiting & diarrhea, is finally starting to grow well. whew.)

Amanda
Reply December 4, 2012

Praying for you and your little guy.

And on a selfish note - I needed to read this post tonight - especially your lines, "If this life experience with all its pain isn’t to make me holy, if it isn’t to show us that there is dancing in the morning, then it would be true that God isn’t real."

From one mama dealing with developmental mysteries of her baby to you, sweet mama of your Titus with his medical mysteries - rejoicing in his weight gain and continuing to pray.

emily wierenga
Reply December 4, 2012

oh, my friend. Jesus never leaves us too comfortable does he? but he never leaves us, either. i LOVE that you taught titus how to dance. and i LOVE LOVE LOVE that he's gaining weight. he's a sweet angel, that one. praying for you all, amber. you are SO loved.

Lori
Reply December 5, 2012

I'm so, so, so thankful for the ounces gained! Please keep us up to date, those of us a continent away have no way else of knowing how wee Titus is doing, and I think of him often! I'll be praying my feeble, uncertain prayers for his surgery.

And on a different note, I hope that offer of friendship is still up for grabs, because we might be coming over sooner rather than later, and my heart is heavy about this!

Linda
Reply December 5, 2012

Praying for you Amber, you're such an encouragement to me when you're the one who I should be encouraging! : )

Sarah
Reply December 7, 2012

It's so inspiring that you're finding your joy and your dancing in the Lord. However, it's got to be hard! Praying for and with you!

Angela Johnson
Reply December 7, 2012

God is in control. Enough said. :)

Celita
Reply December 12, 2012

Hi, Amber... I just read this post in my emails, and I have to say, my heart goes out to you, sister. You are a dear sister in the Lord, and, while we do not know each other, I know that I am daily being stretched to do what is best for my kids, and surrender at the same time. I hope you will not mind that I had a moment's (um, I dont' know if you would call it inspiration, but let's call it that)inspiration.

I have been dealing with some challenges with my kids, and I have been especially encouraged somehow by their names. When we were choosing names for our kids, I prayed long and hard because I really wanted their names not to just be lovey names, but to have meaning for their lives. You know? Sometimes I only have enough strength to pray that the Lord would help them to grow into their names, protect them, and draw them near. It hurts... this journey. but, how I love it. Anyhow...

I was curious to know what made you give a name like "Titus" to your son? Mind you, I have not been around since the beginnings of your writings, so you could very well have stated that already, but for some reason I feel to ask it again. "Titus" is such a strong and handsome name (your son is so handsome, too, by the way), and obviously you could have chosen the name to honor a family member or for any other reason... I had to find out on my own what his name means. I know that there are tons of resources out there about baby names. I know that some names have lots of meanings that were picked up along the years. Fine, but I wanted to see anyway. So I got out my Bethany House baby name book (The Name Book by Dorothea Austin) and found this: the inherent meaning of "Titus" is "OF THE GIANTS". Somewhere along the way, I found other meanings and wrote them in as well. I found "SAVED" and "SAFE".

All I know is that we are God's kids. We are conquerors through HIM who saved us. He knows the past, present, and future, and is IN each. I am praying with you... that your baby may grow to be a Giant in the faith, a man that will desire to do and live God's will and in health, to be strong and courageous to do what is right before our God and to obey His statutes, and to be a powerhouse for the kingdom of God. All of these concerns you have for you sweet boy, may God cover in His peace, His comfort, His sustaining Hope, and fill you with believing thanksgiving, for He has great plans for that boy of yours. If nothing else, trust Him in that. And, who can not be glad to have a meaning like "safe"? He is, you know. You have dedicated Him to our Lord. He is safe, for Psalms says that He has "all of our times in His hands". Hallelujah!

Somehow, I hope this will be encouraging to you. As I write it, it has been to me as well. May God bless you and your family; May He keep you... make His face shine upon you... be gracious to you... and give you peace (Numb 6) in Jesus' powerful, holy, and blessed name! Amen!

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