KIM IS COMPLETELY [NOT] FINE… THE SLIPPERY SLOPE THAT IS PTSD

[PART 1]

Deep breath in…

It’s such an insignificant detail but I toyed with where to place that “not” in the title… Kim is [not] completely fine, Kim is completely fine… not, Kim is completely [not] fine. I’ve procrastinated because seeing the words in black and white would make it real.

The other day I snapped at my family. Of course I’m stern at times and have yelled the much-needed, “Stop that! Be careful, that’s dangerous.” But this came from a place of deep-seated anger. I never yell in front of Lily since it’s so traumatic for her but this particular evening, I didn’t care. Ironically, I came home from a day of worrying about my two little girls and was so emotionally drained that all I wanted was some peace and quiet to work through my thoughts. But any mom knows that that is a rare luxury. Ila never wants to be on the couch, instead she explores her newfound freedom by running around, bashing everything in sight. But since she’s now able to climb on it, that all she wants to do. I broke. And yelled, “Put her on the ground!” Silence followed and I knew it was time to accept the fact that I’m not OK. Anger in any type of mental health issue is rarely talked about – perhaps because it’s clothed in so much shame.

I was met by towering gates of a comfortable, plush security estate, manned attentively by a stern security guard. When he asked, “Reason for visit” I was tempted to say, “In search of the old me. An escape from the crushing, lung-deflating, straight jacket that is my anxiety,” but when he repeated the question, I mumbled the address and retorted with, “To see an old friend.”

As I drove along the cobbled streets, my thunderous mind is distracted by the stillness... a stillness I have longed for, for five years… the giggles of children walking a dog, the slow mosey of an old couple still very much in love, the sound of retirees teeing off in the distance and the echoing tttkkk ttkkk ttkkk hum of sprinklers offering new life to the perfectly manicured lawns. At the end of the street, I’m met by *Cara’s smiling face; she is probably three or four years older than I am and under different circumstances, we could’ve bonded over our love of the De Grendel 2003 Pinot Noir, the highs and lows of parenthood and our love of nail-biting movies and comfortable, sensible shoes. But today that isn’t our roles. She my therapist, I, her patient. We walk across the rickety bridge, surrounded by ceramic fairies and bird houses and enter her cavern of healing. Although I’ve been here before, it’s still unlike the rooms the movies have promised me – I’m greeted by a homely slipcover couch adorned with scatters, children’s toys, framed photographs and knick knacks from her travels. No aged mahogany Chesterfield holding the imprints of patients before me who, too, have come to unload their emotional baggage.

She dives right in. "So, what’s been going on?” She knows my story so there’s nothing new I can tell her. If you know my story, there’s not much you’ll find here either, except for when it might be time for you to resort to self-care. If you don't, let's continue as we were -whatever our relationship may be. I postponed it for three years because of something someone said, “Get to a therapist and stop torturing [us] with your stories.” I didn’t even want to burden a therapist with my trials. Grief and trauma are viewed as having an expiry date. I wasn’t angry or hurt by the comment, just confused since not even my closest friends knew anything until Lily’s second birthday when a friend gifted her with a bathing costume and another confidant asked, “What’s that scar on her chest?” I remember Will’s dad weeping, the most together person I know, because I didn’t want him to extend Lily’s story to his prayer circle who would’ve sent their love and comfort. I never saw myself expressing my pain as a means for “attention.” It’s the last thing anyone wants; trust me. The thought of people coming up to me, or friends constantly Whatsapping me to ask how she’s doing would’ve killed me.

I followed Cara’s question with, “I snapped at my family. I have never been that angry before. Lily is turning 6 in three months, which means I have to book an appointment with her paediatric cardiologist soon.” I hear the iconic line, “And how does that make you feel?” I breathe in and respond with, “Terrified.” And a verbal vomitous purging ensues. “I’m afraid that we got off scot-free and that it’s time to pay the piper.”

Scot-free. LOL. Though I have retired Lily’s medical history to the dark crevices of my mind where childhood traumas and boogeyman nightmares reside, scot free are the last words I should use. “Are you still living in crisis mode?” “Yip,” I respond, now fixing my eyes on the DIY castle with its asymmetric towers on either side. I don’t know why my eyes keep falling there but it does.

To understand her comment of crisis mode, I have to take you back to 2012. Early June or late May; Will and I were delighted to find out that we were pregnant. Six months in, my doctor did some blood tests and discovered that my PAPP-A levels were really low. 1 or higher is ideal but mine was in the region 0.1. Since I’ve always wanted a baby and didn’t understand his medical terms, I didn’t care if Lily would be born just a head and a spine, but the fact that he nibbled at the end of his pen like a nervous goafer made me anxious. I am one of those people who needs to know every insignificant detail to ready myself for the journey ahead. By week 28 my feet had swollen almost three sizes, my cheeks and hands were puffy but I chalked it up to preggy weight. My gynae checked my blood pressure and though I don’t know the exact reading, it was ridiculously high. It was preeclampsia. I had no symptoms, well not any you can feel, and he sent me home with a canister to collect my urine for the next 24 hours. When I returned with barely a saucerful, I was admitted. The next few weeks I was waited on hand and foot by committed nurses and visited by him and his colleague every morning and night. By week 34, I went in for a routine check-up and he held up a chart – ranging from white to chartreuse to yellow to mustard to green to bottle green. I was in the ‘emerald green zone’ which meant there was protein in my urine and my organs were starting to swell. He calmly said, “This baby needs to come out. Right now; I’ve already briefed the others to prep the theatre. She hasn’t gained any weight since the last time and this is detrimental to you and your baby’s health.” This may be the first time in my life that I was truly terrified.  I was wheeled in and Will was placed in charge of keeping me calm. Who was in charge of keeping him calm? We met Lily fifteen minutes later and my gyane's words put my mind at ease, “Here’s your baby, ooh she’s strong. This one’s gonna be fine.” My blood pressure returned to normal and I breathed a sigh of relief – that’s why my PAPP-A levels were low. This nightmare was behind us. On day 3, something changed. Will and I entered the NICU and I told him that something was wrong. Call it “mother’s intuition” but my fears were confirmed when none of the nurses made eye contact. The head sister came over and said, “The doctor wants to see you at 1 ‘o’ clock. My heart, and undoubtedly Will’s sunk into our stomachs. That was the longest two-hour wait of our lives. The doctor started with, “We have a problem. Actually we have four. If it were three, I think we’d be OK. But I’m not the expert.” My eyes filled with tears. I could no longer see his black and white gingham shirt and loose wedding ring from his recent banting and squash tournaments. I couldn’t hear him either. It’s as if I floated above my body looking down at us talking to him. I stupidly wanted to reply, “But I’ve just bonded with her; how can you tell us that our precious, beautiful girl has a problem?” His words, “But we have a plan, “ snapped me back from my ethereal form. “I have confirmed with my colleague that Lily has Tetralogy of Fallot but he is the best in the business and Lily’s surgeon, Dr. Vosloo is the number one heartsurgeon in Africa – she is a remarkable person and has saved countless lives. Don’t Google anything or it’ll only send you into a negative, terrifying hole.” We were sent home two weeks later with “tasks” and a target: “She needs to be 6 kilos by the time she is 6 months. Watch her lips in case they turn blue and call the ambulance immediately. Also DON’T let around anyone who is sick around her.”

We were determined to stick to the brief. What we didn’t know was that CHD babies don’t gain weight. It was then that I really learned the origin of the idiom: “No use crying over spilled milk” because I cried for every drop of spilled breastmilk. Literally a drop. Lily would grow too tired to finish a feed so we calculated her needs according to her weight and decided to feed her as much as she could take, every half hour – whether 10 or 60 mls. It was a non-stop rollercoaster of pumping, cleaning, feeding, crying  and sleeping, or lack thereof. We couldn’t t sleep – to fearful that cyanosis might rear its ugly head in the dark of the night. Her little apnea monitor went off at least twice a night and we’d be frightened to death. By month 4, her cheeks were cute and full and we were happy that she was on target. But she started bringing up all her feeds. I called her paediatric cardiologist and he said, “It’s time.” We were booked for two days later and for a minute, we stopped the hectic schedule and just enjoyed her. Taking her in, sniffing that divine little head and shooting hundreds of pics in case this was our last two days with her. We held it together pretty well; I was proud of us, but when that theatre gown came out, Will and I both broke down.  I think we couldn’t have imagined how tiny it would be. We sat in the downstairs cafeteria focusing on the chicken and feta wraps in front of us and decided to go for a drive to pass the time. I have no idea where we went – we just sauntered around, aimlessly. We arrived back just as she was being wheeled from theatre, just in time for her surgeon to call us over. My heart sank to my toes. She was calling for nurses and doctors to assist and I thought for sure that she was beckoning us to say our farewells. But she said, “Dit was darem ‘n enorme gat. Maar ons het haar gefix.” Lily was a far-cry from the wriggly bright-eyed baby we knew - she was swollen beyond recognition and the only clue that it was our gorgeous Lilybum was the birthmark above her foot. I felt as if I were exhaling for the first time in months. She was fine. Our precious angel was fine. The following two to three weeks in ICU are blurry but I occasionally get flashbacks. After surgery,  a baby’s clock is reset and they have to learn to feed and breathe on their own again. I had forgotten the talks that involved upping her oxygen again because she was struggling to breathe on her own. I had blocked out the calls saying she wasn’t taking her feeds. The tears rolling down her cheeks, and her silent cries as we sat helplessly were long lost memories. Our little angel was OK. The dust settled…

After all of this, we found out that we were pregnant again, and though Will and I were absolutely paralysed by the possibility of this happening again, we were thrilled to have our pigeon pair. But my PAPP-A level were low again. And this time, we knew what it meant. We saw specialists and surgeons to check every organ and we were both healthy and well. But on Christmas Day at 24 weeks, I woke up with the sheets soaked and we made our way to the hospital. I was booked in. Placental Abruptia. The placenta was tearing away from him slowly. Since Mother Nature sees the placenta removing itself and birth, I was in labour. By day 16, I was in too much pain to continue and Liam was losing valuable time and nutrients. His paediatric surgeon shared her concerns with me and at that I was hit with the dire reality of the situation. He was born naturally but whisked away before we could see or smell or greet him. The NICU for micro preemies is seriously something I wouldn’t wish on my worst enemy. It’s an emotional rollercoaster changing from one minute to the next. He fought courageously for 25 days but none of his organs had developed properly and we were called in to say our goodbyes. Will and I were broken. I felt as if I had failed Liam and Will completely. That my body had failed them. For the second time. The guilt that I feel is still unparallelled. It’s raw and aching and constant. The next few years, Will and I tried to rebuild who we once were. But I was a shell. I sat in the car for up to an hour before entering the house every night. On nights when meals weren’t replaced with cigarettes, I would go to bed immediately, barely acknowledging Lily and her need for love and attention. The added guilt of Will always being what I needed but that I couldn’t be for him what he needed still lingers. When Will begged of me to “return to them”, I knew it was time to seek help. I called renovators to dismantle the gaping wound in the form of the empty nursery. With each smash and bash the pain lessened and the constant decisions I needed to make kept my mind occupied. It was a fresh start. Until I came home, noticed that the grey I picked out was more blue and had to explain to the good folks as Builders why I didn’t want my home to look like a nursery. Then wept on the floor for what felt like an hour. This was how I came to meet Cara for the first time. She explained why I had withdrawn from my family – cutting myself off emotionally to protect myself from the agony of loss. When we received Lily’s autism diagnosis, I knew I had to stop this damn pity party and be the mommy daughter deserved. Slowly, this amazing, smart, hilarious little girl pulled me out of my emotional slumber.

Nearly three years after Liam’s passing, we were ready to have another child, as ready as one can ever be, I guess. I don’t have to ask him but I know that Will did it completely for me.  We tried for quite a while and on 24 August, in a noisome bathroom, I finally saw a positive result. I called Will immediately. And then every person I knew and loved to share the good news. This time I was determined to will this into a happy, healthy pregnancy. And of all three, this was my  easiest – I savoured every kick, every discomfort, every sleepless night, every craving, knowing this would be the last time I would experience the glory that is pregnancy. By week 30, I was over the moon, we were over the hump, Ila’s lungs were now fully developed. Only 10 weeks to go. By week 32 I felt really uncomfortable and exhausted, as one does. I finished up some freelance work and decided to take a nap. But it was as if something celestial woke me and I went to the bathroom. I was hemorraghing again. Badly. I called Will and gave myself 5 seconds. To be honest, I made it humorous for myself to calm me down: “Now listen, bitch, you’ve been through this before, give yourself 5 seconds to freak the fuck out then get your shit together.” Will drove to the hospital like a maniac – jumping amber lights and curbs. I kept yelling at the poor guy, “If this is not placental preevia but placental accreta; if you have to choose, you choose the effing baby! You hear me!” I was in warrior mode. But apparently also in full ‘disgustingly horrible wife’ mode.  I had applied for medical aid the morning before I found out that we were pregnant so they wouldn’t cover Ila’s birth. At first we weren’t going to be admitted but my gynae came rushing in and pushed me into theatre himself. I was relieved but he kept asking, “Why would you do this? We’ve been waiting for an hour, you KNOW that you’re high risk. Twenty to thirty more minutes and your baby would be dead!” I froze completely. When Ila was out she wasn’t breathing. I couldn’t hear her cries but Will held my gaze and insisted that she was fine. By minute two or three she started breathing on her own and let our the tiniest yet mightiest cheetah growl. “You wouldn’t have made it to the hospital. Not at all. Twenty to thirty minutes.” Above me, his colleague kept anxiously repeating, “I can’t find the source of this bleed. I can’t.” I kept shaking uncontrollably which didn’t make her job any easier. But I honestly didn’t give a damn. Ila was here. And she was fine.

The second day that she was home, she stopped breathing and for a split second I thought, “This is it. You don’t get to have a second chance.” I told Lily to get into the car and though she wasn’t following instructions at the time, she opened the door and hopped in. I had Ila on my lap, administering CPR and shoving my fingers down her throat. We were at the hospital within 3 minutes. She was breathing and fine. I held her for two hours, noticing only then that none of us were wearing any pants. A few months later, Will accidentally put a drop of tea tree oil drop in her milk instead of Reuterina (dammit, why do the bottles look the same!) and we were back in hospital to X-ray her lungs. A few months later, again with a 40 degree fever. Usually in an emergency, I go into flight mode – like Cam in Modern Family with a kickass line like, “It’s go time!” But this time was different. The nurse asked me, “Mom, are you just going to stand there or actually help us? Mom?” I only realised she was speaking to me when she repeated, “Mom?” I was done; completely zoned out, rendered motionless by the smell of familiar Germ-Star hand sanitiser and bleeping monitors. I just couldn’t move. I was like a soldier in total shut down mode. I had given up. Again the sleepless nights start. The obsessive checking whether my girls were breathing,  the obsessive oven checking, the obsessive bath tub draining. During a drought. The obsessive “what ifs - what if we had a tyre burst to, and not from the hospital? What if the doctor didn’t wheel me in? What if we went to the other hospital? What if the traffic lights were all red? What if I forgot to take my progesterone? What if? And the obsessive “Twenty minutes. Twenty minutes. Twenty minutes” rolling around my head like the metal pellet in a Pin Ball machine. The fact that history came within twenty minutes of repeating itself is something I can't let go of.

I avert my gaze from the crooked castle to a loose skirting and then a mismatched floor board with the woodgrain facing the other way. It dawns on me that perhaps I feel like only the three things that caught my eye – twisted, seemingly fitting in, out of place, crooked, broken.

*Cara raises the question, “And how are you at work, in social situations and with friends?”

“It’s a role, a gambit, a ruse; a break from the shadows; I’m The Phantom of the Opera-ting Room.” Are you waiting for the other shoe to drop?” Deep breath in… “Without question.”.

END OF PART 1