Titus Update: A New Normal


We’ve been home for a week now, and most days that I’ve wanted to write an update but haven’t known what to say. Things change so much. His weight yo-yos, and we’ve had a few hard days, but after a week with the feeding tube going directly into his intestines, we have slowly upped his feeds. Over that week, Titus has gained 11 ounces! Although the weight gain is primarily from the calories going through his tube (and not so much from the food he’s eating), I have an amazing friend helping me process ways to encourage him to eat more.  I think we’ve learned that he digests protein and fat, and it’s the veggies and fruits and carbs that he doesn’t handle. Surely every little bit of knowledge helps.

Seth’s parents watched the older 3 boys the entire week before we came home, and then my parents came for this last week. Truly I don’t know what I would have done without them. I literally just swept my own kitchen floor for the first time in weeks. My sister and sister-in-law were planning to come today, but we’ve asked them to wait since this seems to be a marathon. We may need them here later, and suddenly we’re all acting desperate for normalcy. It’s funny how hard regular ol life can be, but then when you lose the regular you think you might do just anything to have the old way back again.

Titus turned one the day after we returned home from nearly two weeks at Arkansas Children’s Hospital. We had an impromptu birthday party for him and Jude, since Jude turned 6 while we were away. A dear friend made us allergen-free cupcakes, and that was our introduction into the world of not having a clue how to eat without dairy, wheat, soy, or eggs. Every day our church brings our dinner, and each woman who cooks has helped me enter in a little more, showing me ways to cook and ideas on how not to be boring.

This post is not poetic, but be warned: other than this, all I know to do is write poetry. In my desperation to be normal, my oddball features have stepped into high gear. I guess poetry is a coping mechanism?

A week from Monday, my 2 oldest boys will start public school. My Jude starts kindergarten. I want to hold his hand for one week straight. Nobody’s taught Ian jack squat, and yet he can tell you all his letters. Isaac is starting 2nd grade, and I’ve started wondering if I skipped that grade because I can’t remember it, which may be a good thing since I’ve never faked confidence more than when I’ve sent my own kids off to school. If I don’t remember it, then maybe it wasn’t that bad? I hate anxiety.

The back and forth of trust and doubt, of tantrum and security, of answers and waiting long, all of it is maturing me. Yet I still feel like I’m floating outside my body watching it all happen below. Were it not for so many of you filling in the gaps for me, I may have fallen apart. Thank you for showing us such love.

amberhaines
About me

62 Comments

Amber
Reply August 12, 2012

Also? If there's anyone out there who knows how to help me make feed burner work, I would pay in a big fat bear hug.

Bueller?

    ed cyzewski
    Reply August 13, 2012

    Regarding feedburner, look up Todd Hiestand on Twitter. He's a web designer who can help you out.

    Sorry to hear about your struggles to find a new normal. Gosh, we have one one-month old who is in good health, and he keeps on our toes! I will be praying for peace, sanity, and the continued help.

    Darcy Wiley
    Reply August 13, 2012

    I got your update today, so maybe it's working?

Ann Kroeker
Reply August 12, 2012

Oh, Amber...thank you for the update, and I am sooooo wishing I could help you with feed burner, but I only barely know how it functions.

All I can send it love. But I might mention this to Dan King. He seems like he'd know about Feed Burner.

    Amber
    Reply August 13, 2012

    Guess what? I somehow fixed it myself! I have no idea how.

    Ann, I always believe you, like when you say you'd be here if you could. I believe you. Thank you friend.

      Dan King
      Reply August 13, 2012

      Sweet! That was easy! I was just about to reach out to you about this, so I'm glad to find that it's fixed. Don't hesitate to reach out to me if there is ever ANYTHING technical that I can help with on your site... I'm always happy to help, especially when payment is a "big fat bear hug"!

Jessica Y
Reply August 13, 2012

Good to hear from you, girl. Praying for your new "normal".

Devi
Reply August 13, 2012

Hi Amber, I've been reading your blog for some time and just wanted to comment now - I'm so sorry about your son. I've thought about him and you and prayed that God will heal him.

I'm no expert on the food-for-babies stuff, but one thing I've found that my son likes is coconut milk. It has a great taste, high in fats and helps him gain weight.. I put it in anything, really (food, porridge, etc.). Almond milk has been another hit here because he basically did not like cows milk.. Also, this is a vegan lady's blog (I don't know her at all). The receipes are great - she uses soy and gluten, but it's dairy and egg-free.. Her food looks amazing. Here's the link to the recipes page: http://ohdeardrea.blogspot.ch/search/label/diet%20water

    Amber
    Reply August 13, 2012

    Devi, yes. this is perfeect. This is what I need and then also the sit-down time to bookmark a few things. Oooo, maybe I should start pinning some recipe links.

    We do a ton of coconut fats around here. In fact, Titus is made of coconut. Keep the suggestions coming! And thanks for commenting. I don't know why, but I rarely comment on blogs, too.

Steph {HopeUnbroken}
Reply August 13, 2012

oh, how i'm praying for you, as we've been walking this path of food allergies and such for a few years and it's STILL a major source of tears and frustration for me on any given day. it is what drives me before the Lord every. single. day. don't hear me wrong. i don't feel hopeless. but boy, do i feel helpless many a day! but He sustains. somehow. HE SUSTAINS.
my only memory of second grade--"cheating" on a math test. really, what teacher seats kids across from each other if she doesn't expect them to "help" each other out when they can see each other's mistakes??? i got an "F". i learned a lesson, but i'm not sure it was the one she was trying to teach me :-) in spite of her, i loved second grade, and i'm sure your son will, too.
praying for you all as you continue this journey. that the Lord's hand will sustain you. uphold you. give you wings that make your flight feel effortless. and on the days when you must trudge through the oh-so-very difficult, may you know the strength of His arms as He holds you through it.
Steph

    Amber
    Reply August 13, 2012

    Thank you for praying, Steph. Goodness, it's hard, but I really am eating healthier than ever.

    You made me remember 2nd grade! My teacher was Mrs. Davis, and our classroom was a trailer. Yep. I loved her. She wore rainbow toe socks.

Anna
Reply August 13, 2012

It feels odd to send love to someone I don't know and to wonder how they are over things that are so personal but I figure you've started it by writing about it so... I do send love and prayers and thoughts. Thank you for updates too. X

    Amber
    Reply August 13, 2012

    Thank you for this, Anna. I did start it. :)

Cheryl
Reply August 13, 2012

Amber, thank you do much for sharing your heart. I too am dealing with a completely different new normal. And yet, God is in it.
You, Seth, and all your boys are faithfully in my prayers.

    Amber
    Reply August 13, 2012

    Cheryl, thank you for prayers. I guess if I really think about it, every single normal I get is only temporary anyway. I'm learning to let go, and I'm also learning what a fighter I am - in a good and bad sense. :)

Kelly @ Love Well
Reply August 13, 2012

I'm so heartened to hear he's gaining weight! I know it's a marathon, but every forward step counts, right? Praying normalcy over you girl, whatever that is. Praying you thrive even in the storm and that you will know the steadiness of the rock beneath your feet.

    Amber
    Reply August 13, 2012

    Guess what? I'm at a coffee shop working on my computer stuff. :) It makes me feel like a person. You need to go do this, too, Kelly.

Jennifer@GDWJ
Reply August 13, 2012

Oh Amber. Praying for all of you still. My Lydia and I prayed for Titus last night. I wish I could bring over dinner to you, even though we've never met in person. We'll keep praying.

    Amber
    Reply August 13, 2012

    Jennifer, it just really tickles how many little ones are praying for Titus. I love it. Thank you sister.

dearabbyleigh
Reply August 13, 2012

i count it a good thing that you ache to write poetry in such a time as this.
i can't wait to be there to hold your boy and your hand.

    Amber
    Reply August 13, 2012

    I fear that I'm going to sit in your lap for days!

Rhonda Greenway
Reply August 13, 2012

Hey sweetie....you did a great job yesterday at church.~ of course I cried.
I had this memory of when Mark & I went out with you & Seth and told us that you were wading in to New Heights slowly because of past hurts from the church. What a blessing to now have the church surrounding you and helping carry you through this storm. I went to the website to sign up for food and all the slots were taken. You know me....when I don't know what to do- I cook. Can Mark smoke you guys some ribs? I'm not sure how to cook for your new diet, but will figure it out. I love you and have you guys at the top of my prayer list
.
My only memory of 2nd grade.....being sent to the principals office because a girl sent me a note and asked if I would be her friend ~ check yes or no ~ I checked no. I've never been much for lying and I really didn't like her. :-) My principal ~ also my mom and dad's friend ~ also a deacon at the church ~ told me I needed to be nice and try and be Jesus to this girl. I tried. ha ha.~ thought that might make you smile. hugs to you!!

    Amber
    Reply August 13, 2012

    RHONDA! That is hilarious to me. Oh gracious.

    Can Mark smoke us some ribs? Ummmm yes he can. :) You guys are wonderful. Maybe we can eat those ribs together one day.

Shelly Miller
Reply August 13, 2012

Strangely, I just got your last five posts altogether in my inbox. I was so excited to see you there. I'm praying for Titus and all of you. And Happy belated Birthday. Mine was on the 9th. It's nice to know that my two favorite bloggers share the same birthday. As Ann says, we're kindred spirits. Your courage and raw honesty and the way you and Seth are walking through this together is so inspiring. Glory is a good word. Love you Amber.

    Amber
    Reply August 13, 2012

    Glory is a good word indeed. It's the word I've said over and over through all this. Hardly a thing makes sense, but GLORY.

    Thank you sweet Shelly. I hope your day was good, too.

      Diana Trautwein
      Reply August 13, 2012

      Mine all arrived in one email notice, too. So sorry to have missed a couple of these - the others I caught through Facebook, I think. Oh my, Amber. What a journey! Praying for you all and relieved to hear that Titus is responding with some weight gain. How in the world is it even possible for such a small boy to have such huge allergies? So many blessings as you re-learn how to feed your family, dear friend. This is not easy - but you're learning that God's grace is somehow sufficient, even here. And there is nothing wrong with having an occasional meltdown in the middle of all this worry and stress - sometimes the melting is the way the love gets in...

Stephanie Precourt
Reply August 13, 2012

Oh, I've been praying. And since this is the helper in me, I offer this link- Gray is allergic to all of those things, too, but the wheat and soy are minor for him. This site is a tremendous help in knowing what everyday foods are dairy & egg free: http://www.peta.org/living/vegetarian-living/accidentally-vegan.aspx Look for vegan items, and then if you have a health food store near you a lot will be labeled "soy-free" and "wheat free" too, of course I wish I could say something more lovely than this, but had to share.

Love,
Steph

    Amber
    Reply August 13, 2012

    No, friend, this is great! Thank you. We're used to feeding Jude dairy-free and wheat-free, but for some reason adding soy-free and egg-free paralyzed me. It's a pretty big deal to keep Titus away from these things, so our whole family is following this diet for a while.

    Amazingly, I have benefitted from eating Vegan, too. So what am I called if I am vegan, but I also eat meat? Oh mercy.

    Love you, Steph.

Patricia (Pollywog Creek)
Reply August 13, 2012

I rarely comment, Amber, but I fell in love with you, your writing, and your family long ago. I've been praying for y'all for weeks - turning on my computer just to look for updates. Oh, how I love the body of Christ...bound together in His love and holding each other up in prayer when the miles between us are many. Your comment about poetry being your coping mechanism in your search for normalcy was an aha moment for me. It can hurt too much for me to cut up my own eggs, but if there's anyway I can make it happen, I'll limp outside with my camera. Makes sense. You and your family remain in my prayers.

    Amber
    Reply August 13, 2012

    Yes, Patricia! Thank you deeply for praying.

Elizabeth
Reply August 13, 2012

Amber, I cherish your writing and I will look forward to your heart come through your poetry. It's always beautiful to me. Praying still. Happy Birthday, Titus. May this school year be filled with wonder, awe, peace and JOY for your three sons. You tell so tenderly of this time. My heart bends along side your momma's heart.

    Amber
    Reply August 13, 2012

    Thank you, Elizabeth. This is a great blessing.

HopefulLeigh
Reply August 13, 2012

Poetry is most definitely a coping mechanism. You write whatever words come to you, Amber. We'll read them.

Keeping you all in my prayers and wishing I could love on you in person.

Sarah Bessey
Reply August 13, 2012

Amber, my Crazy comes out in the stress, too, I feel this so strong. You go all the way to Crazytown, our bags are packed, we're just coming with you,that's all. xo

    Amber
    Reply August 13, 2012

    Sarah, you make crazy town so pretty.

Tanya Marlow
Reply August 13, 2012

Severely lacking anything profound to say, but SO thankful that Titus is putting on weight at last. Continuing to pray for you - sending much love. X

Ashleigh Baker
Reply August 13, 2012

And yet your words are always poetry, whether or not you feel it. So thankful he's gaining, however it is, and that you have support.

Also? School can be so wonderful, despite all our fears. I was so afraid last year, and it's been perfect for us. I'm praying for your boys as I pray for mine, and your heart along with my own.

    Amber
    Reply August 13, 2012

    yes. that's the prayer I need. Thank you Ashleigh. You're good stuff.

the Blah Blah Blahger
Reply August 13, 2012

I wish I lived close enough to help out with dinners, sweeping, etc! You're never far from my thoughts...

Lisa-Jo@thegypsymama
Reply August 13, 2012

We want to hug you in person....

Linda
Reply August 13, 2012

Praying for you, Titus and your family during this time, that the Lord will carry you and be your sustenance in every way.

Brittany
Reply August 13, 2012

I have a little attached to my monitor at work reminding me to pray for Titus and the rest of your clan.

Love and love.

Nacole Simmons
Reply August 13, 2012

Love. Praying for you still...

Lauren
Reply August 13, 2012

at night me and my little ones pray for Titus and two other premature twin babies we know. even though i don't know you i feel like i do. you are my sister in Christ. we will keep praying for all of you. much much love!!!!

melody
Reply August 13, 2012

love you.

Shelly R
Reply August 13, 2012

Amber though we do not know each other... My heart has broken wide open, how I have poured tears, and prayed for you. And now today I read 11 ounces and my heart leaps with joy. I know this feeling of new normals, that change every day. I know the wheat/dairy/soy/egg free road, along with 27 other foods that came after the aspergers diagnosis. I know the worry of the little one who is nearly 18 months now, that God brought us at 6 weeks old, that does not gain weight or height. I know the tantrums and the struggles. And I know how faithful my God is to carry me through each new normal. I am praying for your new normals, comfort as your little ones go off to school.

I have a wealth of information of cooking allergen free, blogs, cookbooks, fav recipes... I can send you a list if you would like. I don't want to clutter your comments with a bunch of links. You can email me at srichardson1367 at yahoo dot com and will send it all to you.

Love and hugs...

Hannah McMillen
Reply August 13, 2012

I am so glad that Titus had a birthday party with a real cake!!! So excited that he is gaining some weight. Hang in there, it's hard but you are such a great momma and I know that you are going above and beyond to give all those babies everything they need. Hope Titus' little eye is all better! :) Thinking of you often.

kendal
Reply August 13, 2012

so glad you got your feed burner working - i've been making sure to check your FB for updates.... and when my normal is gone, i falter, like really a lot. praying for you as you seek the new normal and grasp for something beautiful like poetry.

jimmie lee
Reply August 13, 2012

hi amber!
Just a reminder that there are some of us out here that may not be commenting and such but you and your family esp. titus are on our hearts and minds. Just a little encouragement that there are more people than you may know praying for you :)

for something like this, praying is all i know how to do.

Ann
Reply August 13, 2012

Oh, I remember the epiphany of this after the hospital with a boy: "It’s funny how hard regular ol life can be, but then when you lose the regular you think you might do just anything to have the old way back again."

Broken with you --- filling in the gaps.

Always love, always, always, and all the prayers...
All's grace,
Ann

shannan carothers
Reply August 14, 2012

I've been praying for Titus and the rest of your family. Our youngest could only have rice products. She did not eat or gain weight well and we had to do feeding therapy. Luckily she out grow the food allergies. She is still under weight and height still. I know that this is a struggle for you but I know you are strong. Your faith will carry you through you are strong.
God bless you.

Vanessa Worth
Reply August 15, 2012

You are awesome Amber. You can write whatever you want to write and we are always here to read your writing.

Lisa @ Crazy Adventures in Parenting
Reply August 15, 2012

Hugs and hugs, sweet pea.

suzanne
Reply August 16, 2012

Dear Amber, I am so thankful to come across your blog (and your husband's). I am praying for Titus, and when I first heard of his illness with failure to thrive my heart sank in empathy; our oldest daughter was born at 29 weeks and I worried over her eating and weight gain the first three years of her life. I will continue to pray, and I will look forward to reading more of your heart and thoughts. Bless you, Suzanne (Austin TX)

tonia
Reply August 16, 2012

Ah friend....I'm just sitting here with you, WITH you....feeling the questions and the doubts and knowing how the faith surges and ebbs like a tide. You are so much stronger than you know yet and God is going to walk with you through all the days and years ahead. I see the road signs you are posting and I recognize them. You are right, so right, to enter into the present day and breathe deeply the scent of now and take only the manna you need for this day alone. This is the way we get through.

You've had many good offers and suggestions but I am just an email away if I can encourage or support. (I know all about wheat/dairy/egg/soy free too. )

So much love. Happy birthday to you and your sweet boys. Praying their school days will go so smooth and you will feel the strong hand of Jesus around each one.

Kristen Lenca
Reply August 17, 2012

Dear Amber,

I read one of your posts over at (in)courage and thought I would send a couple of resources your way. We found out my (almost) 1-year old daughter has MSPI (Milk/Soy Protein Intolerance) at about 6 months old. I . Here are two websites that I have been using for recipes:
www.mspimama.com
intolerantoffspring.com

Hopefully they will be of some help to you. Sending prayers for Titus and for your family as you discover a new "normal."

Holly Deloach
Reply August 23, 2012

I wish a normal life with you girl.

Cari K
Reply September 5, 2012

Amber,

I have followed your blog off and on for a while...And I wanted to let you know that I am praying for you and your family. I understand the search for the "new normal"...when food becomes an enemy and you seek to make some peace. My son was diagnosed with Eosiniphilic Esophagitis 5 years ago. 4 days before his 6th birthday, we learned he was intolerant to gluten, eggs, nuts, soy and dairy. Since then, we've been on a rollercoaster of a journey. I'd love to share some resources with you and, maybe just be someone to talk through this with. Feel free to email me at carispeaks (at) gmail (dot) com.

Leave a comment

Your email address will not be published. Required fields are marked *