Down syndrome · Uncategorized

I live with Fear

It creeps in as her nose begins to run.  At the first cough, the first sign of chest retractions, the first wheeze.


It’s just a cold. She gets a lot of colds. Most are just colds.

Some are not.

There have been five times when an ambulance has had to be called from a pediatrician’s office or even an ER to move her to a place that could better take care of her. Because they were afraid.  Once, 911 was called from my mother’s house in Utah because her cold symptoms had gone from bad to worse. Her hands had turned purple, she would not wake up.  That same day she was taken by life flight to a children’s hospital. Because they were afraid.

Last month was her sixth ambulance ride. Just a couple of days ago I had to take Casey to get a vaccine (and autism!) and we were put in the room where we had been in December when we waited for rescue. Waiting in that room was Fear.

I live with Fear. It reminds me that this cold could be her next ambulance ride, her next hospital stay. When we are in the ambulances or at the hospital, Fear reminds me that it could get a lot worse.  It reminds me of the times I’ve watched situations go from bad to unimaginable for too many families. I know too many families that live with a grief that is what Fear knows brings me to my knees at the first sign of illness.

Fear wears on me. It makes me tired in my bones. Abby’s sick again today. Her dad was sick yesterday, her brother is home today. We have kept her in as much as we can for the past couple of weeks, but we can’t stop the outside from getting in.

And now I sit with Fear, the unpleasant reminder that no matter how hard I try, I can’t keep my own daughter well. Guilt hangs around, too, but that that’s another post for another day. Sufficient to say, Guilt isn’t backing down from his claims that I didn’t do enough. That the Walmart trip to get baby wipes could have been avoided had I just been paying better attention.

I don’t live IN fear. I live with it. In every cough, in every ambulance ride, in every sleepless night. An uninvited guest who stays silent most of the time, but has a crazy ability to shout out Rationality when my daughter’s nose starts to run.

33 thoughts on “I live with Fear

  1. Oh, honey. I’m sorry. YOu know I get this all too well. (Kinda hanging on the edges there lately, too.) I wish I could change it– take away your fear, your guilt feelings. That’s like telling you not to breathe or not to love your children. Instead, I will simply tell you that I’m here…lots of us are…holding your hand through the magic of technology and sharing our love and thoughts fo good health. Of springtime and joyful days spent laughing in the sun. Love you. xo

  2. Fear and I are on a first name basis for many reasons, so I am very familiar with how intrusive and obstructive and unwelcome he is. But you also have Hope, which has the ability to chase those lurking shadows away and reminds you that you are also surrounded by Love.

    Okay. It made sense in my head but admittedly I took a perfectly good analogy and turned it into some sort of discounted generic greeting card. I’m so sorry. I do that sometimes. Ruin the moment I mean.

    Bottom line? You are not alone. And you are a kick ass mom.

    1. Thank you. I totally get what you mean about Hope. And I do feel surrounded by love, and I need to remember that when all I feel in the room is Fear.

      We are in the writing of the metaphors, aren’t we now?

  3. Lexi, the ever-present fear has to be overwhelming. I can’t imagine the tension and weight that you carry around, this Fear. It’s not that much, it isn’t truly helpful, but know that you and your family are loved so much from afar. We’re all pulling for the Ab-ster, and wishing you strength.


  4. Sending hugs and love and the reminder that you are doing your best and your best is enough, lady. Stop talking about my friend like she’s not anything but awesome, YOU HEAR ME? 🙂

  5. Oh, Lexi, I can’t even imagine how that must be to live with that kind of fear. It’s got to be paralyzing. You’re an amazing mom. Your kids are super-lucky to have you looking out for them, shouldering that fear and uncertainty for them. I hope her current illness passes without incident.

  6. oh Lexi. My heart is breaking reading this. I want to punch guilt in the face and sit on top of fear. Squash him into a pancake. We are all there standing beside you, all the time. xo

    1. We will squash fear into a pancake and have it for breakfast..after we hang out in Boston all night. Just tell me when.

  7. I saw your title, read the first two sentences, closed it, felt the anxiety and then returned to read. My chest tightened as I read. I know of some of the fear you speak. I can hardly stand the sound of a siren. I won’t say Hang in there, I HATE that phrase. I will keep you close in my prayers

    1. Thank you, Amy. Sirens still get me, too. I feel my heart beat faster when ambulances rush by. It’s always there…

      1. I read my comment. Telling you I was keeping you close in prayer. Did it sound like the “party line”. Wanted you to know I am thinking of Abby, saying little “hope she’s doing better statements to whoever is listening.” Strength for all!
        Physical and mental

  8. So, so well said. My heart was with you as I read your words.
    Living with fear… I get that. I truly do. My daughter having cystic fibrosis, coughs and runny noses are met with fear. A cold? A cold can so quickly turn to bronchitis, pneumonia, prolonged hospital stays, IV antibiotics. Parent guilt, oh yes. I empathizes with you here as well. I wish the best and hope your daughter recovers from this one with no secondary complications, ❤

    1. I hate that people get it, because that means they’ve gone through it and worse…but I need to hear I’m not alone, too. Thank you.

  9. I am truly sorry you live with some much pain. I wish someone could take it away for you. It’s not fair that you, Abby and your family must live this way.

  10. Every single line of this hurt my heart. I wish I could kick fears ass out of your life. And the guilt sucks. Do not blame yourself for a single thing. You are doing your absolute best. And your family knows that. xoxox

  11. You are such a good mom. I’ve been sitting here trying to think of what to say, but in truth, I don’t know what this is like. All I want you to know is that you are strong, your girl is strong, and you have all the good wishes I have that Fear remains on the periphery.

    1. I love you, Jean. Thank you for saying that. It means a lot to me. I think you’re an amazing mom and person, too. I want a shirt that says “be like Stimey”

  12. Lexi, my hope and prayer is that Abby gets through this without visits to hospitals or ambulances. I also live with fear, but more for my health and longevity. I cannot imagine carrying that fear for such a sweet child. When I tend to go in those dark places…I seek out light and hope to get me through. I don’t know why we carry so much guilt, but we do. Sometimes there are no answers to our questions. Sending prayers!

  13. Oh dear Lexi, I share your fear. I fear the grocery store, because someone will inevitably say she’s so cute and reach out a hand to touch her. I feel as if I should lunge out with my entire body, deflecting the unseen germ as if she were in a scene from a movie and the bad guy is trying to shoot her. The question of can I hold her? Send my mind into the search for hand sanitizer and a face mask. The question of, “Did you wash your hands?”, when the boys come home from school is really getting old. None of this compares to the fear brought on by the fact that your child is sick, in the hospital and close to death. Sanity from the fear comes from the fact that you are doing everything possible to prevent illness in your household. When I am afraid, I put my trust in you. This verse helps me…
    4 In God, whose word I praise—
    in God I trust and am not afraid.
    Psalms 56:3-4
    Love and miss you greatly!

  14. It might help to bear in mind that you fear because you love. If you did not fear, Abby would be so much more vulnerable. Fear may be wearying, but it also keeps you vigilant, so you can be the best mom you can be. *hugs*

  15. this breaks my heart! In a lesser way I do know what you mean. everytime my daughter gets sick she starts having terrible bouts of grand mal seizures and often gets pnemonia due to a compromised lung. This was much more dramatic when she was a baby, ending up with stays on the NICU, etc, but now that she’s older she’s avoided the hospital admissions (last ER visit was probably 6 years ago.). It weird to live with fear as your baseline. stay strong and i hope she is well soon… 😦

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