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I was washing my hands in the sink outside the door to the Pediatric ICU. I looked up and caught my tired face in the mirror. At the same moment, another face, another mama, was doing the same: Inspecting her own exhaustion like she was looking at a picture of herself and wondering how she got here.

Under her breath, she muttered this one sentence prayer like she was reading it directly from my own heart.

Lord, have mercy.

This has been the worst. I won’t go into great detail, but we came in Tuesday thinking we would close the tiny open hole that hadn’t quite closed after taking out her trach tube a year ago, then expected to \be home again in a day or two. All signs pointed to success.

That was not to be. Actual surgery time went perfectly. But, the past two days in recovery have been scary. Frustrating. Nauseating.

In post-op, K coughed when she woke up from anesthesia and blew an interior stitch. She inflated herself with air, and (complicated story short) the doctor cut all the stitches he had put in the top layer of her skin. So, she has a large, open hole in her neck that we thought we would watch and wait and let heal.

We thought we had weathered the worst, and were headed to a room upstairs out of ICU. But, a chest x-ray showed air around her lungs that had caused a lung to partially collapse.
So she will need a chest tube and we will be putting a trach tube back in.

Trach tube. Again. It’s not indefinite like it was the first time; we have tentative plans to surgically help her so she isn’t dependent on the trach anymore.

But, here we sit. Waiting for them to come help our baby keep breathing.

This is not what we planned. This is not what we wanted. But our baby is breathing.

To be honest, I’ve been mad at God the past few days.

It just feels so hard to go back to square one after everything we’ve been through. We thought we were sealing up the airway issues and moving forward.

But, here we sit. Somehow thrown violently back to the starting line of this race, told to start over.

And it’s back to the Psalms, because it’s what I read when I need balm for my soul. Lee remembered Psalm 13, which reads like the psalmist put pen and ink to my stormiest thoughts this week.

It starts like this:
How long, O Lord? Will you forget me forever?
How long will you hide your face from me?
How long must I take counsel in my soul
and have sorrow in my heart all the day?
How long shall my enemy be exalted over me?

This is my silent rage. I’ve prayed and prayed this week, but nothing is easy. Just when I think we’re in the clear, something else happens.

I want to breathe for her. I want to give my body so she doesn’t have to hurt. But I can’t. And so we give our comfort, we give our strength. When we have no more to give, we give anyways because she is our girl.

David continues:
Consider and answer me, O Lord my God;
lest my enemy say, “I have prevailed over him,”
lest my foes rejoice because I am shaken.

Shaken. Yes, that’s about right. I never wanted to experience that week again—the one when she first was trach’ed in the NICU two years ago, the week that comes back to me in vivid fragments of memories.

But as I’ve been writing this, they’ve come to tell me my girl is out of surgery. We went back and saw her again covered in tubes. And, yeah—it feels like we’ve been defeated.
But there is work to do.

So, once again, we’re putting on sterile gloves and suctioning a trach. Once again, I’m kissing her face as she shows me she hurts in a way I cannot understand. Once again, I’m steeling myself to see the places where they’ve had to cut her open. And once again, I’m on my knees begging my God for mercy, mercy.

I’ve come up empty when I try to draw strength and courage from my reserves. There isn’t a drop left. But I know He will fill me, because He always does.

Psalm 13 ends with a shift. My heart is getting here. When there is nothing to do but face a reality I don’t like and walk straight into the wilderness again, the only thing to do is trust my God who knows tomorrow.

But I have trusted in your steadfast love;
my heart shall rejoice in your salvation.
I will sing to the Lord,
because he has dealt bountifully with me.

We sang to her last night when she woke up from anesthesia to find that she had a painful tube connected to her side and a ventilator hooked into a trach, which hasn’t been there for a year.

We sang, “He’s got the whole world in his hands” because that’s what she likes to sing at bedtime.

There is great wisdom and comfort in baby songs. As bad as all this feels, I know I have a God who is in control. Bad things happen because we live in a broken world, but He will write this story and call it strength. Not sadness.

I know I have a God who understands. As Lee prayed last night, Father God knows what it means to watch His child suffer.

And from that suffering came good. Because of Jesus, I have a hope to cling to as I suit up to face this next battle.

He’s given us discernment and helped us make some really hard choices this week. He’s given us peace in knowing we’re doing the right thing for our girl, no matter how painful. He’s given us some really great doctors and nurses who care and whom we can trust to take care of our girl. He’s given us the overwhelming support of a praying community—friends and family who buoy us with prayers and encouragement. A good word at the right time does a lot for our exhausted bodies and minds and hearts.

And He’s brought us through this before. He’ll do it again.

He’s given us miracles before. He’ll do it again.

This is going to be hard.

But, here we go.

13 thoughts on “Back

  1. oh Shannon I am so sorry you all are going through all this. I will keep you and your family in my prayers and pray that sweet baby girl will heal quickly.

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  2. Shannon, you have every prayer in my heart. I can’t imagine the pain and confusion you are walking through right now. You are a spiritual warrior and, I pray, that the love of God binds all things for you during this very trying time. Peace and Grace, Natalie

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  3. Nazia sent me this. As I read this I want to let you know that you made my faith stronger. You are a good soul. Your positivity is amazing. Your an inspiration. Your a mom. God tests his people and wants to bring people closer to him. He loves us more than a mom loves his child. And we all know how much a mom loves. Prayers to you may God have mercy on us all.

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  4. Hi

    I just joined the special needs Facebook group you belong too. We are also at the Tch Picu. Our baby had surgery on his throat. We were also expecting to move to a room but have been delayed with complications although not as serious as yours. Just wanted to let you know there is someone else there in the Picu too. As I was hand washing this morning I was wondering if there was anyone else there who was in the fb group . I will be praying for you guys. Wishing you all the best.

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  5. Shannon,
    I am a friend of your sister Jenn. I have read your blog posts in the past and have cried with you and prayed for you.
    I am doing so now.
    But, I wanted to thank you for these timely words and scriptures. I, too, am angry with God. My husband and I had a beautiful baby girl this week who we only had 7 precious hours with before she went to be with Jesus. I just walked in the door to my house for the first time, seeing all the baby things scattered, and having empty arms. I am even now listening to my strong, brave husband weeping in the shower. The pain is so intense. I cannot fathom what His will in this could possibly be. I am angry. I am hurt. I feel betrayed. But, still I know His actions were faithful and kind. They were for the best, even though I longed for a different miracle to happen. My plans didn’t come through the way I had hoped. But, He is still good. My heart is with yours today. I will pray for your sweet girl and that He would bring such beauty from both of our hardships. Thank you for sharing your story. Know it has helped others, myself included.
    I am so sorry you’re going through this. But, thank you for being open and real so that moms like me, and so many others, can know we aren’t alone during the difficult days.

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  6. Praying for you and Lee and your baby girl. Do not lose sight of His miracles because I know they happen and His strength will sustain you🙏🙏🙏

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  7. Hello Shannon and baby girl “K”. Thank you for sharing your experience with us. I will definitely pray with you all on K’s behalf. You my dear has shaken up my faith and I thank you for that. I realize this is stressful, emotionally heavy and often draining. I can imagine a walk in your shoes and it hurts my heart so I know you’re truly hurting. I tell you, your endurance has been increased beyond measure and Our GOD has NOT forgotten about you or baby K. I love your faith in our GOD! He can do all things. Exceedingly and bundantly obove all we can ask or think. I say this will all of my heart. Don’t give up!! Your test will be your testimony. Your strength is not just for you. I know baby K is drawing from your love and strength too. You got this my dear. Look in that mirror again after praying over this again, and watch what happens. What do you see? A different picture.
    Love y’all
    Lj♡

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  8. Blessed is our Great and Mighty God! Who was and is and will always be.. The one and only constant forever and ever. You my friend have a beautiful and inspiring gift! Thank you, you must continue on this journey and I will pray to continue with you. I am sitting in my room at the fire station and came across abide and you and than your website. I prayed for you and yours and will continue to do so…our God is Big! Very Big…. Never forget that… In this dark world we are lights for each other when mine grows dim I see yours and when yours goes dim I will share mine… God is good… Always… Continue sister…continue…

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      1. Awesome! I just saw this and it made me smile:) so I’m driving back from Costco and hear my favorite song right now and was impressed to share it with you… don’t ask me why but pick up your little one and put away everything play this song and dance with her under the shadow of the Almighty who deserves more than we can ever give Him…..
        Jadon Lavik from the album “The Road Acoustic” the song is called “Hear our Song”

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