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.