Last night, I had my first full panic attack since we received James’ diagnosis. I am surprised that I haven’t had one sooner, as I have been prone to them since my late teen years.

Nighttime is always hard for me. The darkness outside makes me feel trapped. The world starts to shrink around me, and the pressure that has been present in my chest since June 23 gets worse and worse until I feel like I am completely losing my mind.

Last night, I started to spiral out of control emotionally, and I could not gain control of it. I spent about 2 hours crying on and off hysterically, clutching James to me.

I didn’t appreciate fully how easy we had it before this diagnosis. I didn’t appreciate the ability to just throw the kids in the car and have a family meal at our favorite restaurant. I didn’t appreciate being able to go to Trader Joe’s with the girls and with Jim. I didn’t appreciate putting the kids to bed, kicking back on the couch with a snack and a book or TV show until bedtime. I had no concept of what difficult is. I complained about the usual things – kids waking up in the middle of the night, potty accidents, picky eaters. Now, I realize that what I thought was “hard” was merely annoying.

Hard is looking at your son and knowing that every kiss on his soft, downy head could be the last. Hard is living on edge constantly waiting for the SPO2 monitor to alarm that his oxygen levels are dropping. Hard is doing the “normal” day-to-day things like getting up, doing laundry, feeding your other children, and trying to put on a brave face while inside, you are quietly crumbling into dust. Hard is knowing that as soon as the kids are asleep and darkness has fallen outside, your mind will cave inward, and you will not be able to stop crying.

Last night, I looked ahead into our future and saw an endless line of doctor’s visits, surgeries, stress, fear, anxiety, constantly waiting to hear an alarm go off that signifies the end. I saw the inability to ever do the fun, easy things that we did before – going to the park as a family, going out to eat, shopping together, going to birthday parties or Mountain Play Lodge.

I saw my son having cardiac surgery, being in pain, being separated from us, perhaps never coming home again.

Every day, I struggle. I feel caught in a morass. Everything around me feels hazy, out of focus. When talking to people, I become immediately fatigued, and I just want to close my eyes and sleep. Everything is muted and dulled.

I need control. I always have. I am a planner. I like to solve problems immediately. When there is some conflict in my life, I need to resolve it very quickly, or else it hangs over me and drives me crazy.

There is no way to “solve” this. There is no way around it. I must go straight through the middle of the most agonizing pain a mother can ever feel.

My son’s condition is terminal. When it will be terminal is anyone’s guess. I struggle with committing fully to hospice care or leaving our decisions open-ended. Part of me wants to commit him to hospice fully – to keep him at home, comfortable, happy, fed, have the nurses check on him periodically. Part of the reason that I want to do this – I think – is to have control, to have some have idea when this nightmare of living on edge will come to an end. That isn’t the right reason to choose hospice. I also don’t want James to suffer, to be hospitalized again, to go through painful surgeries that may or may not work.

Our pediatric visit today was a total disaster, and the stress of that visit alone was enough to make me never want to take him out of the house again. We left the girls at home with a friend, and thank god for that. I cannot imagine them being there while we deal with everything. It was hard enough to wrangle all of James’ equipment and then handle the desat episode.

Something in me has been fundamentally broken, and it will never be repaired. I find my hands shaking when trying to do simple tasks.

I am so afraid that this is going to affect my daughters – that they will remember their childhoods as covered in sadness. Even the joy that I normally take in them is muffled.

I don’t know how I can survive this.

Every day, I ask myself if it would have been better if we had just let him come in his own time, kept him comfortable and with us and at home from the first, and let him die peacefully, if that is what would have happened. He is so tiny and weak, and he works so hard to breathe sometimes. I know that he doesn’t know that he’s sick, but I hate the oxygen prongs in his nose, the NG tube that slides in and out, his cracked and dry lips that bleed because he is always slightly dehydrated (the cardiologist wants him slightly dehydrated to protect him from heart failure). I hate that he can’t nurse or take a bottle, that taking a pacifier wears him out. I hate it all, and I want it to stop for him. And then I think about him dying, and my heart dies a million deaths.

There is no containing this agony. There is no way to go but forwards. There is nothing to do but endure.

I am not religious nor spiritual, but I ask for prayers now. I need every bit of help that I can get.



7 thoughts on “Panic

  1. I have been following your blog and my heart breaks for you. I can’t even begin to imagine what you are going through. But I think my mother can. My sister was born with a rare congenital heart defect. She was 7 years old when she passed. I have asked my mom many times over the last several years how she got through it, how the loss of a child didn’t break her. She always says, “Because I didn’t have a choice. You never know what you can survive until you don’t have a choice.” She has said many times that having two other children she had to take care of forced her to pick herself up every morning. I know she misses my sister every day. And it took her a long time, but she smiles, she laughs, and she has a happy life despite all she went through. She never thought it would be possible, and for the first few years it wasn’t, but she’s there now. I don’t know if this gives you any kind of hope or not, but I felt the need to reach out. I think about you and your family every day.


  2. I don’t know you, a friend forwarded your blog to me today. I may not know you, but my heart weeps for you as you go through this awful, awful time with your son, because I, too, am a mother. I firmly believe in the presence of a loving God, who truly cares for all of us. We actually just talked with our kids tonight about children being ill, families being separated by death, and as scary and sad as that is, there is Hope. You and your family will be in my prayers, praying for peace, divine healing, compassion, protection on your mind and your family, an end to the panic and anxiety you have been facing. You are loved and cared for.


  3. I cannot even begin to imagine what you’re going through. There are no words. I want to just let you know that there is hope, and that Hope can be found in Jesus Christ. What I’m writing below is an excerpt from my devotion today. I pray that you will just read through it with an open mind.
    “Sometimes things like this just simply stink and there’s no cheery rainbow or pot of gold around the next corner. The music doesn’t crescendo as the hero in the story swoops you onto the side of his horse and the two of you ride off into the sunset to live happily ever after.

    Sometimes it just is what it is. And that’s that.

    But God’s girls have a beautiful promise tucked in our pockets that lets us smile even when tears puddle in the corner of our eyes. Even when there’s no rainbow, pot of gold or galloping prince — we have the promise of resurrection.

    On the other side of death there will always be a resurrection of some sort. Maybe not a resurrection of our circumstances. And maybe not a resurrection of things lining up like we thought they should. But there will be a resurrection.

    Jesus has insured that.

    Nothing in this world can permanently strip hope from our lives when we know, “we do not follow cleverly invented stories about the power and coming of our Lord Jesus Christ” but we follow the reality of the Risen One (2 Peter 1:16).


    The One who was well-acquainted with rejection. The One who was betrayed, abandoned, beaten, crucified and buried. The One death could not hold down.

    He is our resurrection.

    He is our hope.

    He is that beautiful reminder that rejection from man doesn’t equal rejection from God.

    And He is the One who is weaving a story into our life that will one day make sense.

    Dear Jesus, You know what rejection feels like. That’s why You are the perfect One for me to run to when I feel rejected. Today, I’m bringing you the broken pieces of my heart and asking You to stir hope deep within me again. Rejection did not get to have the final say in Your life, and I am choosing to believe it will not have the final say in mine either. In Jesus’ Name, Amen.

    John 11:25-26, “Jesus said to her, ‘I am the resurrection and the life. The one who believes in me will live, even though they die; and whoever lives by believing in me will never die. Do you believe this?’” (NIV)

    The enemy wants us to feel left out, lonely, and less than. But the Lord wants us to know we are destined for a love that can never be diminished, tarnished, shaken, or taken. Join us as we learn more about living from the abundant place that we are loved with Lysa TerKeurst’s book, Uninvited: Living Loved When You Feel Less Than, Left Out, and Lonely.”

    I pray that God will bring you peace and comfort to your family and that he will reveal himself to you during this time. With god there is no such thing as terminal, there is temporary separation and eternal life that can be found in Him.



  4. I pray for you and your family every day. I am religious and believe that God will grant you peace just trust him. There is a reason for James he has a purpose on this earth I also think you are doing the best you can and James feels all the love that surrounds him. I had hospice care for both my dad and my sister. It is a terrible decision to make. But they will help you more than you realize. They have a special calling for this and will help you find your way. I think you are amazing and can’t even begin to imagine all you are going through. May God grant you peace and mercy.


  5. I am a friend of Stephanie Hickey’s mom through church and also an Early Intervention teacher working with birth to three babies with all kinds of diagnoses. I can tell you that the way to go forward with James is just holding and loving him and learn to look beyond the tubes and see the beautiful baby you have right now. Tomorrow is not promised to any of us. Do not try to look beyond the moment you are living this second and find joy in that second. Your girls will be okay. Children are amazing. Do not try to fix any of it. Learning to let go of control is so hard, I know because I have been the same way but my work with many many families of special needs babies has taught me to just love the moment and let go of all horrible dread, paralyzing fear, and diagnoses, and predictions from doctors. I am a believer in Jesus and yet this is one of those times that there are no acceptable answers when children are sick. I just have to believe that they are loved by God even more than you can imagine and hold to that hope of your baby being well one day. Please know that I will be praying for you and your James and your girls and husband. Each of you will handle this his or her own way and there is no right or wrong way. I will pray for a calm and peace in your soul as you love on James! Amen.


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