I often dream about water when I am overwhelmed. It has become a reoccurring dream since I was 16 years old. It starts off the same way. It is a beautiful sunny day near a sea but the location varies, an island, or a building near the sea. Random at times. However, the skies darken and I watch the seas rise. A tsunami coming towards me. I try to scream to everyone to move to higher ground, the wave of destruction would hover inches away from me, it never touched me until now.
THE GREAT UNKNOWN
My daughter, Adriana was diagnosed with Type 1 Diabetes on Tuesday 3 August 2021. It has been a little over a month since her diagnosis and that medical detection is the tsunami that enveloped our family. Often I am asked how do I feel and how are we coping with Adriana’s diagnosis which can leave me stammering for the best explanation.
Remember the tsunami I was talking about? Well the waves have not stopped. Life as you know it completely changes as you are overcome by the tsunami. You are unsure which way the surface is, you are battling to breathe as you are whipped around by the force of the water. The moment you hit the surface, you try to swim but for some reason you can’t. It is as if your body is made of lead. You see another head bobbing around the water near you. You manage to edge closer and closer, only to realise that this weak person is your child. The tangible fear in their eyes as you try to soothe them about what is happening. You use every ounce of your soul to keep your child afloat as the dark waters show their might.
I felt the tsunami as I climbed onto the bed with Adriana in the treatment at Paediatric Endocrinologists’ rooms. There was a flurry of hands as the medical team worked on Adriana. Forty minutes earlier, we were at the paediatrician’s rooms as the urine sample dipstick caught my eye with the deepest violet. I knew we were in trouble as the lady’s brows knitted together. She quickly alerted the doctor after questioning me on Adriana’s last meal and drink. My withered child was afraid as she clung to me. Her sunken eyes and pasty complexion frightened me. Overnight she lost weight as her body resembled an emaciated child living in a war. I was at a loss of words, deep down in the pit of my soul I could not shake off that something was wrong with my child.
WHERE FEET MAY FAIL
Gone was the bubbly, beautiful little girl with an effervescent laugh, replaced with fearful, lethargic, depressed shell of a child. I had wondered if I had “broken” my child with the trauma of leaving her again because of my second emergency surgery during the third-wave of a pandemic? Everyone assumed it was mental health. Depression, anxiety, play-therapy, and psychologists were thrown into the ring. It didn’t satisfy that niggling feeling I had. I needed answers fast because I had tried to treat her. I thought “Maybe I must deworm her again because she’s eating so much”, “Maybe it’s a bladder infection because she’s urinating often?”, “Maybe I must take her for therapy sessions”. To be honest my worst fear was that she had Graves’ disease. She had not been screened since she was a baby and she had no symptoms until now.
“She’s dehydrated”, Dr S remarked quickly as he looked at Adriana and checked her tongue. My mind was still on Graves’ disease when he said that she’ll need a paedriatic endocrinologist. “Oh I have an endocrinologist in Rosebank, I’ll take her there” I replied. “No”, Dr S replied. “She is most likely in D.K.A. diabetic ketoacidosis and needs a paedriatic endocrinologist”.
I had missed the weight of diabetic and was so focused on ketoacidosis. A word that was foreign that I tied to relay it back to my husband when I called him. I did not have the time to even Google the word as I had to race Adriana to the Donald Gordon Medical Suites. “Drive carefully please,” Dr S tells me as I walk out of his rooms. I try to keep Adriana awake as I head to Joburg at the start of peak hour traffic. Her little eyes so heavy with exhaustion but I am petrified for her to fall asleep in the car. My husband had left work to meet us.
I quickly parked my car in the allocated space that the security guard pointed out. He must have seen my desperation when I explained that it was an emergency. I ran up the flight of stairs with Adriana in my arms. She felt like a limp doll as we crossed the threshold into the Paediatric Endocrinologists rooms thinking that the worst was over but the tsunami rose again.
IN OCEAN’S DEEP
I was given a glass of water to catch my breath as one of the doctors briefly told me what they were going to do. I cannot remember her words but we were moved swiftly to the treatment room as they started to ask questions, I gave consent for medical aid, so many things happened at once. I had climbed onto the bed with Adriana as the flurry of hands continued. Adriana’s glucose levels were at 27 bearing in mind that the normal levels are between 4.0 to 5.4 mmol/L (72 to 99 mg/dL) when fasting and up to 7.8 mmol/L (140 mg/dL) 2 hours after eating. A drip was set-up, insulin was administered, finger-prick tests continued, and a continuous glucose monitor (CGM) was placed on her arm. At that moment, I thought “what the f@#k is that? it looks like a security tag for clothes”. I phoned Jarred again to see how far he was and said “Get here now. This is serious!”. Adriana just cried and cried. Almost as if she’d been asleep for weeks and had snapped awake in pain. I was constantly reassured that she was okay. Blood had been drawn and a series of tests were being run for goodness knows what medical jargon. Still, not once had I googled the terms being bounced between the medical team in that treatment room, I was too afraid. I instead tried my hardest to listen as they explained the tests and the monitoring that was being done on Adriana.
Jarred arrived. Adriana stopped crying and I wanted to collapse into heap but I could not. Not yet. The team confirmed that Adriana was Type 1 Diabetic and that she needed to be monitored because she had high levels of ketones which are high levels of blood acids. The fat is her body was being broken down too rapidly for her body to process. The doctor explained that Adriana needed to be admitted out of fear of cerebral edema which is the swelling of a person’s brain when the blood sugar levels are adjusted too quickly. Diabetic ketoacidosis can be fatal if not treated in time and correctly. The patient could go into a coma and die.
I realised my ignorance about diabetes. No one in our family has diabetes. I thought that she’s a little girl, we are not an unhealthy family. So many ill-informed ideas of how she cannot be diabetic. The first thing I was told was “It is not your fault. You didn’t do anything wrong”. The tsunami that I feared so much in my dreams but had never touched me or my loved ones until that moment in the treatment room on that bed with Adriana and my husband to my right. Our little world completely destroyed.
MY SOUL WILL REST
COVID-19 tests were done as we were prepped to go into the Donald Gordon Hospital across the road. Note to self, stop having medical emergencies during a pandemic. As COVID will have it, there was no bed for Adriana and the panic started to rise in me. No beds? Now what. Thankfully the doctors found a bed for Adriana in the south but they had to find a paediatric sub-specialist that could care for Adriana in her DKA state.
It was quicker for us to drive Adriana there than to wait for an ambulance. She had a tiny glimmer of life in her as she told me, “Mommy I don’t like drips” on route to the paediatric intensive care unit. As I had done the COVID test, I was the only one allowed upstairs into the hospital. My husband kissed us goodbye as he went back outside and left to go home to fetch clothing and essentials for Adriana and I.
I was frustrated that we had to hurry and that there did not seem to be a sense of urgency from the nurses. They wanted me to leave Adriana in the P.I.C.U. while I went downstairs to open a file. Of course, she was petrified and there was no way I was leaving her alone. Back downstairs, we go to open the file, the lady at the reception was kind as her eyes crinkled a smile back at me when she saw me dabbing my eyes. I will not lie, and I admit that in P.I.C.U. I was insistent that I needed to see the doctor, as I needed answers about Adriana’s state as she was hooked up with three drips. She kept asking me to hold her hand which I did while the two nurses meandered around us. It was close to 10pm and Adriana was broken. She could not stay awake any longer, she slept as I kept messaging my husband with one hand and held her little hand in the other. I explained to the nurse that we had gone through so much pain three weeks prior with me losing another pregnancy due to a raptured ectopic pregnancy. I shared how Adriana is all we have and that I cannot leave her.
Eventually the specialist arrived and checked up on Adriana. He explained her state and told me how hospital COVID protocol does not allow any parents to stay in the P.I.C.U. (which I will not elaborate more on despite what their website states) and he proceeded to tell me that I would have to leave. Despite my begging, pleading and tears, I remember asking if she would make the night. He said that she would but I did not know what to believe. I walked away from the P.I.C.U. feeling like I was trapped under the tsunami. I could not breathe as I tried to walk away from Adriana. It was heart-wrenching to do. I did not want to cause Adriana any panic or further stress as I visualised the security guards dragging me out of the ward. She was asleep and I had to do what was right for her. I had to trust that specialist as I had zero knowledge of DKA. Where else could I take her during a pandemic when beds are limited?
WHEN OCEANS RISE
I walked out into the parking lot to meet my husband, he was confused as I crumpled. I told him that I had “politely” been kicked out of the ward which I was not allowed into in the first place. We called the endocrinologist’s emergency number and explained what had unfolded, he was angry about it but he could not do anything. It was 10:30pm. We had tried to find numbers online for the hospital etc. No one answered. We were so broken on how that day transpired and struggled to leave the parking lot. I had already called the ward and was reassured that Adriana was fine and was fast asleep. We have never felt so helpless as parents, it was an inhumane predicament to be in.
We drove back home in our cars, leaving our heart in that hospital as we cried the whole way home. I thought I had hit a cardboard box on the way home. It did not matter. I prayed that Adriana would make the night. I was scared to sleep, out of fear that the phone would ring and that the worst had happened. The house was subdued, even our dogs and cat knew something was wrong. The crying continued and still I had not come to realise that this would mean Adriana has diabetes. I did not think about the word. We needed her to be fine, our perfect princess. As much as I tried, I fell asleep for a few hours and we were up, on route to the hospital.
Again I phoned the ward, scared to speak to the nurses. They explained that we had to wait for the specialist to see Adriana. Our phones did not stop ringing and beeping as the news spread about Adriana. We were so overwhelmed as we had no answers yet except that she was okay. Eventually we received a call that I could go in to fetch Adriana as the medical team at the Donald Gordon were waiting for us. Again we raced to Donald Gordon to make the appointment.
Diabetes was explained again to us but now in a lengthier conversation. Insulin, dosages, CGMs and carbs were discussed. I was taken aback that this auto-immune disease had knocked on our door. To be precise, a 5 year old little girls door.
I still battle to comprehend it now.
Why my baby? I am a “why” person, I need a reason but I cannot find the answer.
The nurse then explained food and dosages to us. I had never been one to read nutritional labels. I have always found diets that included any form of counting to be a pain. Now, we had to. Next was the insulin. I for one have never been fan of needles but as the years have passed by and the amount of blood tests that I have done I thought I would manage until I was told to practise inserting the needle on myself. First, Jarred did it. Then it was my turn (obviously, we did not inject insulin into ourselves, it was a dry needle). Adriana stared at me with her big bulging eyes. I was scared to do it. I tried to hide the tremor in my hand. I knew I had to be brave for her as we would have to administer insulin to Adriana daily. I did it. It did not hurt in fact. It was a “mind over matter” moment, I realised that I would continue to do anything for my child. No needle was too intimidating or too painful for me. I need her to remember that moment later in life that she will never walk this journey alone as her parents, we will be with her every step of the way.
While we as a family are navigating diabetes daily, we are trying our best to keep our eyes above the waves as they come. I did not think that my fear of tsunamis would manifest in my life as emotional waves but I am reminded of the lyrics “When oceans rise, my soul will rest in your embrace”. So together we stand because Adriana was saved for a purpose.