A Special Life: Living with the Trauma

I thought I was fine.

Even when I walked into that grocery store, I was a happy average mom just getting some groceries. I never expected what would happen next.

As I was studying tortilla chips trying to decide which ones my husband would like most — he’s a chips and salsa connoisseur— I heard this distinctive, high pitched beep that nearly sent me to my knees. The moment I heard the sound, my heart started racing, my stomach dropped, and my body was filled with the pinpricks of panic. You see, that beep may have come from a grocery store, while my mind was occupied on chips and salsa, and shopping alone with no stress or distraction (a.k.a. kids), but as soon as it hit my ears I was back in an ICU room desperately looking on as my daughter struggled for her life.

The beep continued every few seconds and my fight or flight instinct was fully engaged each time. I wasn’t sure how long I could take the surges of adrenaline and anxiousness.

Between each beep I would contemplate what was going on in my body and head. “I’m losing my mind!” I told myself. “This is not happening!”

BEEP! Stings of panic encompass my body. Chest tightening. Heart drops. “Brinley’s at school several miles away. Not in a hospital.” I reminded myself as I take deep breaths.

BEEP! Nausea. Heart pounding. My body in the present and my brain in the past. “I’ve got to get out of here!” was all I could think.

I’ve never been so happy to see a self-checkout register.

On that day in the grocery store it was confirmed to me how deeply my daughter’s disease has impacted me. I’ve always been so worried about her (and her “normal” brother) that I never thought about the deep-seated effect her health has had on me. My trauma bank was filling up fast, but I was too busy caring for my daughter to realize it.

I think most moms are that way. We worry about our child’s well-being, and how THEIR lives are changed by a traumatic event. We don’t even fathom the consequences such events have on our own psyches.

The first night I ever spent in the ICU with Brinley was horrifying. Brinley was intubated, on a ventilator, and was recovering from her first major surgery. The kind of surgery where things could go very wrong so you’re on edge all day. It took a while, but I finally fell asleep that night on the chair/bed/torture device until I was startled awake around 3:00am.

The walls and doors between ICU rooms are completely clear glass and thin, so when the doctors and nurses began yelling “code blue!” I was awake. I heard the nurses and doctors trying to resuscitate the toddler in the room beside us. The bright lights they used lit up our neighboring room. My own heart pounded as I listened to the sounds of CPR followed shortly by the “clear!” shouts before the defibrillator was used. One of the team members asked another, “where are the parents?” and then the response, “they’re in an ICU sleep room.” A doctor yelled, “get a social worker here and the parents!” while desperately trying to restart the child’s tiny heart.

The social worker tried to prepare them for what these tired parents were walking in on — their daughter had passed away. As I heard this mother wailing in agony while clinging to her lifeless child, I looked at Brinley and my heart broke. I sobbed with that mother from the other side of our glass curtain.

Since that day, I cannot sleep in the ICU. I know what can happen while I sleep. I always have my phone number on the board in Brinley’s room along with my sleep room number and the nurses are well aware of how quickly I expect to be contacted if any change occurs. I have to take a special medication for insomnia in order to fall asleep during a hospital stay.

When a social worker is sent to us, I can’t talk to them. I see them coming and I know why — they’re sent when there’s a situation where the child may not survive. Social workers are wonderful people, but I see them coming and I get this immediate, “uh uh, not today!” response in my brain. They are my fight or flight. My heart rate explodes, chest tightens, and all I can hear are the wails of that mom in the ICU.

For years we didn’t have a nurse in our home at night to care for my daughter so we could sleep. I can sleep through a lot of sounds but not the sound of Brinley’s alarms. If I hear them in the night, I will wake up from a dead sleep, my mind and body jolted into action. Most of the time it’s just a small apnea related event, she recovers, and the beeping stops. I can be up for hours trying to calm my body and mind enough to sleep again.

With a special child, alarms mean her body is losing the fight. One night in the hospital, I woke up to a gurgling sound and those ominous beeps. I jump up and see that Brinley’s face is purple, her eyes rolled back, and I could hear watery shallow breaths. She was suffocating in her own mucus as she tried unsuccessfully to cough.

There was no nurse to be seen. I suctioned what I could, increased her oxygen, and attempted to wake her up from her carbon dioxide haze. She would shortly be back in the ICU, intubated again, a ventilator breathing for her, and fighting to survive. So yeah, I wake up to alarms…I wake up in a panic, coming up with solutions before I know what the problem is.

I wish I could say these experiences are few, but they seem to be endless.

Special moms, dads, family, and friends listen closely — raising a sick child (no matter how cute they are or how much we love them) does cause trauma. It’s real. It’s horrifying the first time you experience a trigger or flashback. We have special kids, who — because of their disease — have lives and problems that are not normal. Why would we expect, as their parents, to not have abnormal lives and problems also?

In many ways, a special mom is like a soldier at war, battling the disease overtaking her child’s body. The war comes at a cost — a physical and emotional toll on both child and mom. We focus so much on our child’s survival that we don’t have the energy to recognize the wounds to our own souls. Each battle we fight leaves a scar. The physical ones you see, and the emotional ones may not be visible, but they are there, waiting to surface.

Let’s be real folks. Being a special mom means dealing with hard crap. We survive the battles, but for some of us, we are fighting a war we know we will one day lose. Despite it all, everyday we are trying to fill this precious child’s life with as much joy and peace as possible.

There will be days of tears, experiences that bring us to our knees, and triggers that may come when we least expect it. However, there’s a beautiful thing that happens after these moments — our tears dry, we stand up, and the beeps stop. Along with the suffering of trauma comes the strength of survival.