Parenting a child with diabetes
There’s been a lot of talk on our Facebook page about how diabetes affects the whole family. Especially after this guest article about how Diabetes destroyed my relationship with my mother. Today, we have the other side of the story to tell – a mother’s story of parenting a child with diabetes.
The World Cup Soccer was upon us! The atmosphere was abuzz with all the excitement and schools were closing for holidays. My girls were gearing up for a slumber party to celebrate Kirsten’s 16th birthday, great excitement filled the house as friends arrived present laden and ready for a night of storytelling and fun after an evening at the fan walk.
I asked her not to sleep near two girls who had a cold as it was a long holiday and I didn’t want her to get sick. The party came and went and Kirsten got the dreaded cold. She left two days later to go and spend time in Elgin with a few close friends and when she arrived home with bronchitis was put on antibiotics. She was looking very pale and her loss of weight was almost shocking. The doctor seemed concerned at the time but said we could go away and to see him on our return.
Langebaan was like a breath of fresh air compared to the madness in Cape Town and we were looking forward to a couple of days rest with good friends. Kirsten crawled into bed and did not move. We spent days trying to get her to eat to no avail and then she started vomiting: something was wrong and we could all see it. The chemist said there was a bad virus going around and she stuck to fluids for a couple of days: Energade, Powerade and naartjies were her only input.
The scariest day of my life
I could see that there was something drastically wrong on the Sunday night – it was as if she was not registering my presence, her knees had swollen to the size of rugby balls, her movement was staggered and she looked like a skeleton with skin on. I could not sleep worrying about what was happening to my beautiful daughter, was it what I had feared the most?
The morning came and with it came the scariest day of my life. I went down to check on her and she was semi-comatose. We threw everything into the back of the car and got back to the doctor in Cape Town in record time with her passing in and out of consciousness. I ran into the doctor and I said what I had been dreading to say: “I think she has diabetes!” Tests were run and confirmation came through two hours later: Kirsten was a Type 1 diabetic, her HBA1C registered as her being one for at least 3 months prior to diagnosis and she was immediately started on insulin. A new chapter in our lives had begun.
Let me just add here that on my husband’s side of the family diabetes was prevalent and I had always had a fear that my children would one day be diagnosed. I had constantly had them checked throughout their childhood. I thought by now they were all safe from this terrible burden.
Days filled with diabetes
Our days were filled with diabetes: from doctors to specialists to diabetic educators and reps, it was like a neverending story and a huge overload of information. Could the doctors be wrong? What if it was the energy drinks and naartjies we had given her that had sent her sugars over the top? Could she wake up next week and be fine? “No” was the answer to all our questions and we had to resolve ourselves to the fact that all of our lives were forever going to revolve around diabetes.
Kirsten would have to inject herself three times a day at mealtimes and once before bedtime for the rest of her life. Our days of running into the shops turned into hours reading every label and checking the carb count. All temptations were banished from the house, no more fast foods, as we started our new journey.
Unfortunately for Kirsten, things just did not seem to want to come right. She had lost 11 kilograms and had no muscle on her at all, her BMI was only 16. She could only manage to grab a millimeter of skin to inject but her blood sugar levels were fantastic and her endocrinologist was very impressed with her management thereof. Despite her levels being fine, she kept getting recurring lameness in her legs (from walking the one moment to waking up lame the next), as well as severe neck pains and constant chest infections. We had to forbid anyone near her who was even remotely sick.
At the beginning of December we were thrown into shock as she woke up with a mass of glands on either side of her groin, she was scanned and the glands were in excess of 3cm each so it looked like a bunch of grapes. We anxiously waited as they ruled out lymphoma, but praise be to God, it was not so, and she was blasted with antibiotics to reduce the glands.
Complications of diabetes
Our annual holiday to Plett arrived and everyone was so eager and happy to get there, days filled with friends and relaxation and just time to forget about the negatives of the past six months. We enjoyed the first week without a hitch and then once again Kirsten fell ill: she could not eat anything which was most frustrating as diabetics have to eat, and we landed up in the hospital where they could not find anything wrong. Two days later she could not even drink without crying and when her breathing became difficult we once again packed up everything and raced back to the doctors who knew her history in Cape Town.
She can’t recall at all how she got back home, she had lost all the weight we had painfully tried to put onto her and she was admitted for an esophagogastroduodenoscopy showing she had picked up a viral infection which had left her with hundreds of ulcers from the mouth down into her stomach, another complication of diabetes. Once again, loads of meds and a struggle to get her to put on the weight which she desperately needed to gain her strength.
Friends were understanding and eager to learn how to deal with her should her levels drop and were a constant by her side throughout. My frustration was immense, I was so mad at the world, at my Creator, for allowing this to happen to my once super-healthy and fit daughter who had the world at her feet. How could this be happening and why could I not fix it?
I battled every day to put on a smiling face so that she could not see my worry, I would spend hours sitting in her room at the dead of night praying and watching her just to make sure she did not slip into a coma, I had prayer circles going all over the world for my girl and yet no answers were coming. I realized that God had placed my son (who has Aspergers) in our care because he thought that we could deal with it. He had now obviously decided that we did that job well as Kirsten’s sickness had to be dealt with by us too.
I felt that somehow, somewhere, I had to find the inner strength to show Kirsten that she was still the beautiful daughter I always had, except now she was more special as now it meant that we would have to care for her daily, in all walks of her life. I prayed for the strength to guide me to help her in every way that I could: my shoulders are broad and would surely bear the load.
Not a day goes by that I don’t wonder what her levels are, what she is eating or how she is feeling, if she is not with me it takes everything in my being not to reach for the phone to check. The expense of the last years has been immense, but being her constant carer and companion throughout this ordeal has changed me for the better.
Diabetes brought us closer
We are aware of everything that we eat. This is usually the stage in a teenager’s life that they tend to drift away from the parents, but we have become more united. I still allow her freedom but help by providing pre-packed meals knowing that she can enjoy herself without having to worry about where her next meal is coming from. As a family, we have always been close but this disease has brought us closer. We are always on the lookout and we stand together and work through it so that she feels that she is never alone in this lifetime fight with diabetes. We take a small step each day learning and knowing more. Her smile is constant even through all her worries and ill health and this keeps us going.
My daily thoughts revolve around Kirsten and my prayer is for a cure for diabetes to help, not only my daughter, but the millions of people living with diabetes all over the world.
PS: Kirsten is now a successful mountain climber and blogger – follow her adventures on Instagram: cape_town_adventurer
Posted on: October 19, 2018__Sweet Life__