these days were written


I used to be able to read back through this blog and actually have hints of what had been going on in my life, and I miss that. It may be possible that I’m keeping it to myself lately because I would rather some things not be a part of my story. Oh, but a few days I pulled into the driveway in my minivan with a trunk full of groceries, and the big boys were playing, one with his shirt off and another with a bebe gun. Those savages cheered when I got home, and another ran to me, the one who was puking just two days before, and he gave me the slobbery-est kiss and said “you’re the best mama in the world.”

This is my story. It’s the story I want, and I’m figuring some things out as I tell it back to myself.

I counted back the calendar days since Titus didn’t weigh what he does now, and it’s been over 8 weeks, now almost 9. The buddy hasn’t been growing. Now we’re suspicious of cystic fibrosis again, even though his sweat test was negative and we have no known history of CF in either of our families. We’re just ready to know something, weary with it.

My dear friend is his pediatrician, and I texted her to tell her how I had counted it out. She responded that she was in a meeting, but next thing I knew, she was knocking on my door. She sat on my couch. She’s working through it with me. It’s such a glory. His little immune system could turn out to be such a show, so she encouraged me to stay strong in keeping him close to home. We can’t chance church or Mother’s Day Out or play-dates with kids who have sniffles. How long have I taken so much for granted?

Seth and I take turns going places, and missing community group is the hardest thing. I miss worshipping with my husband, and the truth is that I miss worshipping at all. I’ve found myself in what I call “the dark place.” If I attend a service or hang out with a friend or buy groceries, I’ve found that I’ll have to sleep it off for a few days. I can’t seem to fully accomplish normal things like keep dishes clean or laundry folded and put away. I can’t get my hours and energy spent to add up to how little I’ve done.

Guilt is like a fog, sneaky like a cat. If once as a child you made it your friend, made it your habit to keep its company, then it’s hard to realize that it’s curled up in your lap, blocking vision, hard to know you’ve been petting at it. 

The day after my girlfriend came over to give us some direction with Titus, I woke up so sad, and then as life does, the day sped off into scenarios I couldn’t have written. Ian woke with the worst tummy bug, and I was trying to work some crazy lysol magic to keep the germs away from Titus. Seth agreed to come home during the day so I could keep an appointment I had made with the dermatologist.

He was making me go because I have been itching like fire all over my body for months. I thought maybe it was stress or the doc would give me some cream or offer the evil prednisone, but instead he made the concerned face and explained that usually itching without previous rash points to systemic disease, and then he listed several of the diseases and sent me to the lab for blood work.  Ain’t nobody got time for that.

My mind had already wandered to how I could take care of my boys while enduring chemotherapy or Gerson therapy, so imagine how wonderful it was for me to hear that I’m itching like crazy cakes and have zero energy simply because my iron is low. All I have to do is take iron, drink the blackstrap and eat some meat. Boy Howdy!

Immediately the cat jumped down and ran away. I hate that thing and how it whispers to me that I’m useless and good-for-nothing.

What a strangle-hold guilt puts on worship and prayer. I write it here so maybe you’ll wake up to the pets you’re keeping.

Whatever is happening with Titus, it’s not what I thought it would be. I thought I would either lose him or that he would be healed. The thing I didn’t expect and certainly didn’t desire was the long-haul. If he has cystic fibrosis, then that is why he isn’t growing. There’ll be no going on to another hospital to see if we can make him better. Our appointment is today at 3:00 PM central for his 2nd sweat test.

If it’s positive, we’ll go home and start another life, and if it’s negative we’ll soon be headed to some clinic in Cincinnati or to Mayo Clinic. Please pray that we can feel confident with the sweat test today, one way or the other. 

Psalm 139:16

Your eyes saw my unformed substance;
in your book were written, every one of them,
the days that were formed for me,
when as yet there was none of them.

There’s a freedom I hear about that I just don’t always recognize in my life. I long to be free so much that maybe I’ve built a habit of feigning it. Would you like to join me in exploring this path to true freedom? Follow along on Facebook or subscribe to these posts by email or in a reader.  Have you been keeping pets like guilt or shame that you need to release so you can go to God in prayer? 

amberhaines
About me

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71 Comments

Mike
Reply November 20, 2012

...we continue to pray for Titus and your entire family.

Michelle DeRusha
Reply November 20, 2012

Oh Amber, I am so sorry. I am praying and will be praying hard this afternoon during the sweat test time. I'm glad though, that the crazy itchies are simply due to iron...at least you have a bit of a break there.

Robin
Reply November 20, 2012

I wish there was such a thing as praying harder or righter or better, so instead I'll just mingle my spirit among a host of many. With love and expectation...

xo

Jess
Reply November 20, 2012

This mama's heart is heavy for you and what you are going through with your little one. And oh, do I ever let the guilt lay heavy on me too. Thinking today of the picture of Jesus cradling the lamb in his arms, and praying that kind of peace over you and your family.

Michelle DeRusha
Reply November 20, 2012

By the way, I pet the guilt cat very frequently, so I totally get, and am grateful for, what you are saying here.

Danielle Smith
Reply November 20, 2012

Praying. Sitting here and sending so much love your way. I will spend time in quiet and peace this afternoon thinking of you and your sweet family, my friend - praying that you are given the answers you need. Love to you all.

    Amber
    Reply November 20, 2012

    I hope you get that quiet time today, Danielle. You're special to us , friend. Always always.

Monica
Reply November 20, 2012

I am so sorry Amber. I will be praying for you throughout the day, and specifically at 4 my time. I pray for peace whatever the tests may or may not reveal today.

HopeUnbroken
Reply November 20, 2012

Amber,
I love you, and as much as I didn't want to chuckle. . . can I just say that I had bronchitis????? (which actually became very serious, but. . .) Which I know will make sense to you because you linked that stinkin' hilarious video which my friends and I have been throwing around to each other for months now. All that to say, ain't NONE of us around got time for NONE of dat!!! But we have all felt the sting and weight of discouragement of one thing after the other. . . so know that I stand with you in praying through this season. I HAVE been praying, but continue in that effort. I so love getting these updates on Titus, even though I also understand your desire to keep things close. Knowing that He continues to give you wisdom and peace and comfort through it all. And that He goes before you this day with the testing.
In Him and through Him,
Steph

QuatroMama
Reply November 20, 2012

You are not alone, Sweet Mama. We are lifting Titus up today and the days that follow ....

Jordan Eoff
Reply November 20, 2012

Praying. Grace and peace to you.

Kacia
Reply November 20, 2012

Praying so hard, Amber. Praying for answers - and praying that He will be the greatest comforter when you get those answers.

You are loved.

Megan (FriedOkra)
Reply November 20, 2012

Praying all over y'all today. Answers, Lord.

LoveFeast Table
Reply November 20, 2012

Amber, we are praying for your family today...praying He holds you close, answers come and whatever tomorrow holds, He will be glorified through your lives. Love you!

Erin
Reply November 20, 2012

I have been in the dark place, and I have been in the uncertainty, and I hate them both and the platitudes that go with them.

Prayers for Titus, and for you.

Joy @ Joy in this Journey
Reply November 20, 2012

Praying for you today and always.

JennieLynn
Reply November 20, 2012

I'm praying for you and baby Titus today. You're a wonderful mama.

Jessica
Reply November 20, 2012

Prayer for you today.

    Amber
    Reply November 20, 2012

    Jessica, I think you'd be riding in the van with me today if you could!

Rob Morris
Reply November 20, 2012

With you...

    Amber
    Reply November 20, 2012

    Thank you, brother. You're a good egg.

Preston
Reply November 20, 2012

Here, evening prayer an ocean away, during your appointment, prayers and lit candles and more prayers that keep turning out for your beautiful family.

Courtney Osborn
Reply November 20, 2012

Praying Amber! A girl could only hope to be such an amazing wife and mamma someday...you are the best, even better because you're not perfect. It's really freeing. Learning from you here.

Lisa-Jo@thegypsymama
Reply November 20, 2012

You know all your girls are riding shotgun in that car with you - turning up the music too loud, praying too loud, laughing too hard, crying right alongside.

Drive safe Amber, even if the way lies through the valley. We love you so.

Carrie & Troy
Reply November 20, 2012

Praying for grace and answers today. My heart hurts for you when I read your words. I wish we lived closer so I could be with you! We love you guys!

Tanya Marlow
Reply November 20, 2012

Praying for you all - in the dark place and the waiting. much love

Bekka
Reply November 20, 2012

Praying for clear results one way or another, for peace and comfort, for wisdom for the doctors.

May you find some of that peace and comfort in knowing that whatever the test results reveal, the important things will not change: Love, first and foremost, but you also have the support of many both near and far.

Blessings.

HopefulLeigh
Reply November 20, 2012

Praying, praying.

Ashley
Reply November 20, 2012

Oh Amber, how you write such beauty right from the middle of your pain. I am praying for you, your sweet boy, your family. I love that version of Psalm 139: "His eyes saw our unformed substance." Both in our physical bodies and in those places we did not know needed forming, for those damn cats we didn't know needed to hop the heck off our laps. May you know peace, friend -- in the midst of the not knowing and in the Knowing. Sending so much love.

Liz
Reply November 20, 2012

Praying, praying, praying. Wishing as always there was something tangible to do to make this better, but yet also knowing praying is the most powerful thing I can do.

suzannah {so much shouting, so much laughter}
Reply November 20, 2012

praying, praying, weeping, and trusting. blessings and grace to you and yours.

Kelly @ Love Well
Reply November 20, 2012

Do you see all this love? All these saints who will be with you on the floor of God's throne room today? Glory. I count myself among them.

Sweet Jesus, be near. We beg for answers. We beg for healing. Do what you do! Show off for us! Flex some muscle! We give you all the credit - for life, for love, for everything. And keep that smelly cat away from our friend Amber. Amen.

Tsh @ Simple Mom
Reply November 20, 2012

I know that cat well. Praying for you, Amber, and for Seth.

AnnieBlogs
Reply November 20, 2012

Love y'all. Praying praying praying.

Kelly Sauer
Reply November 20, 2012

The thing that gets me over and over and over about you and about Seth and about Titus... it's the life in you, especially in Titus. He lives in his dust, the same way we live in ours, but he's so THERE. It's stunning amazing, his smile, his spirit, his PERSON that has nothing at all to do with diagnoses or treatments or long haul or short haul. God has SUCH a work for that little boy, Amber, and such a work for you too. He is so very near to you all. Love you so much.

JoANn
Reply November 20, 2012

My third son is so close in age to your Titus, born in June. I pray for you and him often.

My second son had mystery issues. He wasn't developing in his gross motor skills. He just didn't move. We wen't everywhere for answers and we never found them. He's fine now, totally on track for his development, but I never found out what was happening and it still annoys me. I will pray you have answers. I will pray for your peace.

Kim
Reply November 20, 2012

praying for you all today.

Melissa
Reply November 20, 2012

Praying and feeling right along side you, Amber. You are loved.

Megan at SortaCrunchy
Reply November 20, 2012

Oh gosh. Oh, Amber. At 3:00 this afternoon, I'll walk down the block to gather my babies at school and I'll be praying with each footfall. Oh, Lord. Hear our prayer. May His presence be near.

I am so, so thankful that the iron mystery was solved. One answer in a tornado of questions. Glory.

Holding you so, so close.

Sam Van Eman
Reply November 20, 2012

Folks from The High Calling are praying for you today, Amber and Seth. Thanks for the update. Press on.

julie
Reply November 20, 2012

My prayers are yours.

Georgi
Reply November 20, 2012

Praying for you all today.

julie
Reply November 20, 2012

All my prayers are yours.

Shelly Miller
Reply November 20, 2012

Praying Amber and sending love. I nearly lost my daughter on Friday morning to a semi that hit her and tore the whole front end of her car clear off, splattered in a million pieces. She walked away and I'm just so aware of how breath, each one is a miracle. And while I've had hundreds standing in the gap for her and us, I want to pass it on and do the same for you. He is with us, one and all.

the Blah Blah Blahger
Reply November 20, 2012

Walking alongside you, friend...and praying constantly.

Anne
Reply November 20, 2012

Oh, Amber. My heart breaks for you and Seth and Titus. We have been in those shoes of unknowing and waiting and searching for answers. And all the scary tests. Praying for you all to be carried along through all this.

erika @ the life artist
Reply November 20, 2012

Here.

Goldengirls59
Reply November 20, 2012

Amber, don't get discouraged. We all get uncertain times like you have now, I went through it for a year. Just know that you can take one day at a time with God's help and don't look to the future because God has already laid it out for you and has walked that path for you. Don't worry about laundry, the house, let those things slide.. The boys will only remember you being there for them with hugs and meals and stories. Also remember I'm sure you have a treasure trove of people around you that would like to bear your burden with you by taking the boys, providing a meal, drive them somewhere so don't be afraid to ask, I know it's humbling but God has provided this "family" specifically for you! Remember God loves you!

Jessica
Reply November 20, 2012

Hi! I'm visiting from a blog, Everything Beautiful today.

I really love the honesty and depth in your writing. I also appreciate your words about guilt. Guilt plays a huge role in my life. It's something I have to fight constantly! The guilt isn't even always logical! Thanks for sharing a piece of your story today.

Ma
Reply November 20, 2012

Hi Amber
I am so glad that you only had to visit an iron factory! I wonder if your cat has been spayed? Mine often has kittens and I usually call them Condemnation, Shame, Self-Loathing, Rejection and Depression. I am never able to find houses for those lot!
Blessings to you
Mia

Diana Trautwein
Reply November 20, 2012

I just wanna take that grungy alley cat and swing him by the tail until he sails off into the ether. You and Seth are among the finest parents and the finest people I've ever had the privilege to 'know' in this hinterland out here. And God glows through you all. So kick that guilt to the curb and shout back at the evil voices that say otherwise and tell 'em ALMIGHTY GOD lives in you and together, you are not taking any guff. Praying for you right this minute as you're preparing to go for this test. Praying for peace of mind and heart for you and Seth, for sweet Titus-of-the-grin-that's-bigger-than-he-is and for the wide medical community that is gathered around you - that they will be wise and accurate. Lord, have mercy. Have mercy.

Lynn Morrissey
Reply November 20, 2012

Oh praying for you and that precious, beautiful boy, Amber.

Megan
Reply November 20, 2012

Praying for all of you...for an answer and peace in this long valley. You are loved!

Stacey Thacker
Reply November 20, 2012

Oh my word what a cutie he is with those big eyes and that crazy love smile on his face.

Squeeze him tight. He is a keeper! I'll be praying for him and you.

Blessings,
Stacey

Bethany
Reply November 20, 2012

Here for you too, holding your mama-heart close to my own, sending God a little requisition form for peace on your behalf.

Joy Carroll
Reply November 20, 2012

Thanks for the update Amber. Praying like crazy for all of you!

Jessica Heights
Reply November 20, 2012

I've been praying for yuo and sweet Titus through the day. I hope you find the answers soon!

Hannah
Reply November 20, 2012

I can't imagine how it feels to be unable to bring Titus to your community because of the fear of illness while probably thinking that bringing him might result in his healing or clarity of what is going on. Your family will be in our prayers.

Rachel
Reply November 21, 2012

I'm praying for you and your sweet Titus.

greta
Reply November 22, 2012

The thing I didn’t expect and certainly didn’t desire was the long-haul. If he has cystic fibrosis, then that is why he isn’t growing.

Brook
Reply November 22, 2012

Just know you got people all over the world praying for you and you are even covered while you sleep. I can't even image how this whole wild ride feels, but I know you need a special touch of His sweet spirit. I pray that you will literally feel his mighty breath breathing life on you today. Loves from the kids, they will never forget your fun wild brood.

Beth
Reply November 22, 2012

Thanks, I can relate to that cat. It's sneaking around me, and I can't quite identify it's sneaky little voice at the moment. But when I do I am a step closer to sending it back from where it came!

I'm wondering what you have found out about Titus - prayers are needed regardless, that I know.

Tamara
Reply November 22, 2012

Amber, I cannot imagine your struggle - it must be all kinds of hard. I have so much confidence that God's grace is going to be more than sufficient for you in all of it. I am praying for you and your sweet son.

Stephanie Precourt
Reply November 24, 2012

I've been praying. Loving on you from afar.

Steph

Jane Anne
Reply November 25, 2012

Tonight as I struggle to sleep, I am praying for you and your sweet Titus.

emily wierenga
Reply November 25, 2012

oh my dear amber. just reading this now. how did the sweat test go? oh amber. that smile on his face. that smile speaks a thousand words. you are SUCH a good mama. don't let anything tell you otherwise. you have done nothing wrong. his happiness speaks for that. i love you so.

Margaret
Reply November 27, 2012

hoping the sweat test went well and showed the results you wanted!

Emily
Reply November 29, 2012

Praying for you and your family. My little one was labeled "failure to thrive" and we went through some of the same things a few years ago. I'm praying for you with a Momma's heart. And i also want to say THANK YOU for being vulnerable and sharing the truth here... it's an honor just to read it.

Glenda Childers
Reply December 1, 2012

I am sorry that you are having to deal with so many difficult things at once.

Sending love and prayers from Chicago,
Glenda

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