Last night my three year old daughter, Joey, woke up whimpering with a bloody nose. What my husband didn’t realize when he entered the dark bedroom was that her bloody nose was more or less a gushing faucet. He called to me in a shaky voice when he got her into the bathroom and saw her covered from head to foot in blood. While bloody noses are often harmless, and in her case, a side effect of a week spent battling a head cold, the blood was leaking out of her nose so fast that she was sputtering on it as it filled her mouth, her whimpers now full-blown howls of discomfort and confusion.
When I mounted the stairs and saw the trail of her blood in the hallway a switch flipped on inside my brain: I was ready to barge into the battle fully armed and padded with years of special needs parenting skills.
Cool Under Pressure
Joey is our second (and last) child, but she’s the one we cut our parenting teeth on. She was born premature and underweight for her gestational age; her first month out of the womb was spent in an incubator with wires on her chest and a NG-tube in her nose. It was in that dimly lit, quiet NICU room that I started cultivating the skills I’d need to respond to my daughter’s emergencies.
A bradycardia alarm would sound each time her breathing slowed too much and nurses piled in with practiced calm to check her vitals. My husband and I participated in a mandatory infant CPR course. We were coached through the importance of recording accurate breast milk volumes so we could convert them to kcals.
Shortly after she turned one, when it was clear that her growth had stymied, she needed a blood transfusion and a surgery to fit her with a gastronomy tube. I thought watching the anesthesiologist put her under while she wailed was the hardest thing I’d ever have to do. Except, it was nothing compared to the flurry of recovery and subsequent life with a medically fragile child. We were thrust into a world full of appointments with specialists and hospital stays. Of weekly therapies and frequent setbacks and sicknesses. It’s a world we’re still navigating today.
A few years in and we’re a family full of pros. Our 7 year-old astounds me with her patience and acceptance that her sister has needs that are different (and more time consuming) than her own. My husband and I work fluidly as a team to prep overnight feeds through the pump, complete tube changes, and tackle high stress times when Joey can’t keep any food down and loses weight. We intuitively know when we can handle something at home and when we need to grab the go-bag and head to the emergency room.
But there’s a downside to our calm efficiency.
Act Now, Feel Later
All of Joey’s emergencies require immediate and thorough attention. Last night, we knew her nose bleed wasn’t going to be harmful in the long run, but it took 20 minutes to stop the flow of blood and another hour to clean her bed, disinfect the bathroom, and calm her enough to get her back to sleep. Exhausted and hollow-eyed, we both collapsed after the incident and dreaded the next step: processing what happened.
Every medical challenge Joey faces, no matter how small, seems to add to this big black cloud that follows us around. It’s there when we cry with frustration that she hasn’t gotten to have a typical childhood experience. It’s there when we spend the tense 30 minute car drive to the hospital in silence. It’s there when we watch her refuse to eat a helping of food by mouth. It’s there when we spend half our vacation in urgent care. It’s there when she spikes a fever and we know her body won’t be able to keep any nutrition down.
Until recently, I didn’t know it for what it really is: a string of tiny traumas that tighten around us in the hours and days after another trigger.
I mean, perhaps that sounds dramatic, but I was unable to sleep after Joey’s nose bleed. My mind, as it often does after a high-stress incident, replayed all the times I have felt particularly helpless or guilty since her birth. I should have made a better attempt to get her to take bottles of high calorie formula when she was a baby. I should have insisted the doctor give her more pain meds when she came out of surgery and her tiny, 11-lb body was shaking against me as I held her. I should have postponed an out-of-state trip when we discovered she had a fever at the airport.
Then I berated myself. Why am I dwelling? Everything is fine now. She is relatively healthy. Our journey has been a total breeze compared to others. I need to be grateful. I am grateful. I should go to sleep and chalk the night up to a win. We kept everything under control and nothing was worse for the wear (except for maybe her bedsheets).
Because it is much easier to dismiss the trauma of routinely managing my child’s medical emergencies than it is to acknowledge it.
It’s Okay to Name It
Parents of special needs kiddos learn to ignore their racing hearts, swallow the panic, research and prepare in the quiet times, and make complex and difficult decisions on the fly–ones that oftentimes save the lives of their children. And you know what? It’s a daily business with no definitive end point. They do it because they have to–will always have to–and at the expense of their own health and well-being. I write these last sentences with tears in my eyes and a lump in my throat because this is the part of the journey we never talk about.
Special needs parents power on and persist. We fight insurance companies, we argue with doctors, we rock fragile children in our arms, we administer medication, and we organize medical supplies. We respond to emergencies with a steely sort of calm and with a resolve to not let our fears overtake the good times–the smiles, the love, the glimpses of vibrancy and light we see in our children.
But sometimes, it’s okay to let in the uncertainty and the sadness. When we settle in and name our traumas for what they are, maybe they’ll squeeze our hearts a little less. I know it’s foolish to tell a special needs parent to let go and try to breathe easier. It’s simply not possible because we have to stay vigilant. But, as hard as it is, we have to give ourselves some gentleness and time to process. Let those tears fall for now, mama, I know you’ll dry your eyes all too soon and square your shoulders toward the oncoming day.
