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Parenting With PTSD When You Have a Medically Fragile Child

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One afternoon, I sat gently swaying and patting my son’s back after nursing him. I allowed my hand to rest on his little back, as he breathed in and out. When suddenly I heard what sounded like wheezing and crackling as he breathed. What was previously a moment of peaceful parenthood, now became a full-blown anxiety attack that went from zero to 60, as I frantically lay my ear on his chest to hear him breathe. Something didn’t sound right. “He aspirated, I just know it,” I told my husband.

• What is PTSD?

He was just a couple of months old, my second born. Everything about my pregnancy and experience with him had been a challenge thus far. I battled infertility with our oldest and didn’t expect to become pregnant again. I found out I was pregnant three days after my husband left for a year long deployment to Afghanistan. I was a young military wife with no family support where I lived and a daughter with disabilities, whom I had devoted my life to take care of.

My pregnancy was high risk, due to my history with my first and my daughter being born with a birth defect. My labor was complicated; my son couldn’t breathe and after two failed epidurals, I screamed till I lost my voice as I brought him into this world. Did I mention we were three weeks away from a military move and I had to drive for 20 hours postpartum? I came home from giving birth to a mattress on the floor and realtors constantly coming through with little notice to show our home. It was my first breastfeeding experience, as my daughter had a cleft palate and couldn’t. It was so painful, I ended up infected and almost needing stitches.

I fell into postpartum depression as I struggled with feeling like I failed my first child by not being able to be there for her during this difficult time of moving and transitions. After coming so far in her therapies, she reverted and developed such a horrific stutter that no one but me could understand. I would sit and talk with her as tears streamed down my face, because I didn’t know how to help her. She was so frustrated that after an autism diagnosis and being completely nonverbal, she had worked so hard to be able to speak, and now her ability was going away again. The whole rug was being ripped out from under her: we were losing her doctors, surgeons, therapists and specialists we had known her entire life. I didn’t leave our home for months once we came to Arizona. I would sit nursing my son and cry endlessly in that rocking chair.

It wasn’t just adjusting from one child to two. It was losing my entire support system for my daughter and I, losing the time I had to work with her, losing the sleep I needed to be OK. I knew my nerves were shot, but I didn’t realize how deep of a toll all my experiences with my first child took on me. I knew I wasn’t just having anxiety. It was something more.

I was diagnosed with post-traumatic stress disorder (PTSD), as a parent with a medically fragile child. As I sat in the new pediatrician’s office, in our new state, with my new child… I struggled to breathe as every breath my son took, heightened my already over the top anxiety attack. I cried trying to find out who his doctor should be when I had just moved and hadn’t gotten him established yet. I cried to the nurse hotline that it sounded like he had fluid in his chest. I cried to my husband that I just need a doctor to listen with a stethoscope and tell me our son is OK. It took less than two minutes for the doctor to tell me my baby was OK and his lungs sounded clear. This was the start of so many triggers I would have with my children.

I see blood in my daughter’s mouth from a loose tooth she was determined to wiggle out whether it was ready or not. My mind flashes to her mouth caked with blood after her cleft palate repair surgery and I feel my stomach turn and my heart start to race.

I hear my child say their throat is a little sore and I immediately go into worst case scenario and check the back of their throat, as I recall the time my daughter has bronchitis, pneumonia and tonsillitis with a double ear infection all at once and she almost didn’t make it.

I held my son as he had to get a daily heel prick, due to severe jaundice. Something that may seem so small to another parent triggered the memories of them pinning my daughter down, time after time in the hospital, because they couldn’t find a vein for her IV. I can still hear it in my head, “Ma’am, I think we are going to have to shave your daughter’s head, because all her other veins keep blowing.” My beautiful Rapunzel with hair I could put in a ponytail since she was born.

When I tell you, I could tell you countless other examples such as this; you cannot possibly imagine how many. When my kids cry, fall, bleed and experience all the usual scrapes and tumbles that the typical active kid does — the experience is far different for me than for many parents.

Has this resulted in me being a bit of a helicopter parent? ABSOFRICKINLUTELY! Am I even a little bit sorry? Nope. Have I been judged by other moms for it? So much.

So this is what I want to tell you. It is impossible to know someone’s story from the outside looking in. You might not have the faintest idea how thin of thread that mama hovering over her kids is hanging on by. You may never experience the battles she is waging against her mind, which always tell her the worst things that can happen to her child will come to pass, because they have.

Please be kind. Please don’t mom shame. Please don’t attack another person’s parenting style, because you don’t know what led that Mama to be so protective of her baby. Maybe it was clutching them in her arms while they turned blue and stopped breathing. Maybe it was  trying to shake them awake while their oxygen levels plummeted. Maybe it was not being able to be there or help their child, as they were wheeled back to the operating room, crying for their mommy.

Parenting is hard enough as it is. Parenting with PTSD and anxiety can feel dang near impossible some days. We could use all the support we can get.

Image via contributor

Originally published: August 26, 2020
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