Tuesday, February 6, 2018

The Question that Doesn't Help

I made dozens of trips into my daughter's room the first night we were home from the hospital. Her monitor alarmed, signaling a drop in her oxygen saturations. It screamed, "Beep, beep, beep," as I made my way to her room. The night became a long blur of adjustments in her positioning and giving treatments.

A question crossed my mind. 

As I sat near my daughter's hospital bed, my hands held hers as I said a desperate prayer. The ventilator hummed, beeped, and worked to give my daughter breath. The web of wires and tubes crossed my daughter's body as she lay critically ill. 

There was one question screaming at me yet again. 

Days after a throat surgery, I heard my daughter coughing through the baby monitor. When I checked on her, I discovered that Jaycee was coughing on blood coming from her mouth. My husband and I rushed her to the emergency room.

All the while, a question raced through my mind.

I packed for a family trip. I loaded all the medications, nebulizer machine, bi-pap, and airway clearance machine in the vehicle next to her wheelchair.

The question came at me again.

In the nearly 12 years of parenting my medically complex child, I have had some of the same old thoughts and questions rise again and again. Some of the questions are understandable given the situation I find myself in with my daughter. Some questions inspire me to research, learn, and advocate for her. Other questions do me absolutely no good:
Who lives like this?

This question pops in my head in highly intense times or moments when I feel like there's absolutely no one like me. It's a question that stays usually in my head. In moments of complete frustration, I ask it out loud to no one in particular and without expecting any real answer.

Who lives like this?

I ask this when I feel isolated.

I ask it when I feel my parenting experience is outside the norm.

The problem with the question is that it comes with negativity attached to it. The answer to the question is that no one lives like me. But there is no one who lives quite like anyone though really. The question comes when I'm upset, and it doesn't make me feel better.  

There's some things I'm trying not to do because they don't help me. Since this year began, my daughter has been hospitalized twice. Every day this year so far, she has had required an increase in medications and vest airway clearance. I have had to factor her extra needs into everything I have done this year so far. I became frustrated one day that I couldn't just up and go do something that I really needed to do. In my head, I wondered who lived like me. And a second later, I heard the whisperings of God tell me to stop with this question that helps pull me down into a negative space that I don't need to go, especially when I'm juggling so much.

But, I've noticed something else recently. As I walked into the living room, my kids were cuddled up on the couch together watching a movie. They laughed as they held hands and enjoyed a moment together. Later that day, each of them hugged me and told me they loved me. 
Now I ask that same question. 
Who lives like this?


  1. I too ask myself that question and I found comfort knowing that other moms with medically fragile and medically complex kids DO INDEED live like me. They have the same feelings I do and God sees them too. He hears them, sustains them, and gives them strength to go on in this journey. He can do the same for me. I am encouraged by your testimony AND by others who are persevering. The Bible says we are encouraged by the testimony and witness of others and we should bear one another's burdens. You are not alone with this question or in living "like this". There are many of us. I pray that GOD strengthens your spirit, gives you stamina, and reminds you of HIS presence. He's right there with you; in the THICK of it. I'll be thinking of you, your PRECIOUS girl, and your family.

    1. You are right! When I read about other families going through some trials with their children, it does encourage me and helps me feel not so unique. Thanks for that!


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