Children living with Type 1 Diabetes: A mother’s perspective on this life-threatening disease

By Sumaya Seedat Moolla

Zunaira, my daughter, was diagnosed on 13th December 2017, a month after she turned two years old, with Type 1 Diabetes. Diabetes is a name given to a disorder where the body has trouble regulating the levels of glucose in the blood.  The two most common types of Diabetes are Type 1 and Type 2. Type 2 is metabolic, this means that the body is capable of producing insulin but it is not able to use it effectively. Type 1 diabetes what my daughter has been diagnosed with, is an autoimmune disease in which the body attacks the insulin- producing beta cells in the pancreas. When this happens, the pancreas no longer produces insulin. We need insulin to survive as it metabolises the carbohydrates, fats and proteins.  It usually occurs in younger people, but it can happen at any age. There is no cure for Type 1 Diabetes.

Being my first and only child I was quite finicky from her birth about tooth decay and how unhealthy, added sugars in her diet was,  so I was quite hands on with what she was allowed to eat and not allowed to eat. When she was diagnosed with Type 1 Diabetes, a chronic illness, I was rather surprised.

By November 2017 she had already shown symptoms of Type 1 diabetes. Her thirst had increased and so had her urination. She would gulp bottles of water- especially at night -and would wake up drenched in urine if I didn’t wake up in time during the night to change her nappy. Her appetite had increased, but instead of picking up weight, she was losing weight to a point where her face had become sunken in and her bones began protruding. She was extremely moody and would wake up crying at night, many times.  I ignored the fruity scent on her breath and how she had to look at objects very close to her eyes to see them. Many people suggested that I have her tested for diabetes, but at the back of my mind I kept reassuring myself that my daughter was too little and didn’t have an unhealthy or sweet diet to warrant any concern of being diabetic.

My husband and I eventually booked an appointment with the paediatrician who then sent us for further tests which confirmed that her sugar level was at 33 (which is extremely high- she could have slipped into a coma or have damage done to her organs). He arranged for us an appointment at the endocrinologist who agreed to see us immediately. I am so grateful that we got to them when we did because if we didn’t, I could have lost my daughter.

Information on diabetes is by large, available online to read and educate oneself. We are lucky enough to have a great endocrinologist with a team of educators who work with him and are always available to assist us. We also belong to a Type 1 Diabetes support group, for parents with children who are suffering with this disease.

Living with a child suffering with Type 1 Diabetes, is different with every day that passes. Zunaira can do and eat the same things daily, but with different results. Type 1 Diabetes isn’t only about maintaining her diet, counting carbs and giving insulin, it is a complete way of life and there is no break from it, physically and emotionally. Everything must be considered: food, weather, exercise or sport. Almost everything will affect her levels. She was diagnosed at two years old, so she had to deal with her toddler emotions that most of us call the ‘terrible two’s’ , as well as diabetes, so I would assume that it did and still does take a toll on her. Some days are good and some days are just not. She doesn’t understand what is happening to her and her body or why she feels shaky or has blurred vision some days or why she goes from being happy to completely aggressive in no time, or even why the adults in her life don’t understand how she feels.

I have decided that it is my duty to educate others about Type 1 diabetes. Many people don’t know what this chronic illness is all about. Insulin is not a cure, it keeps my daughter alive and injecting too much or too little can be fatal for her. She still cannot tell me when she feels high or low so I need to read and understand her behaviour. When other kids eat in front of her it used to break my heart -still does- but she is so mature about it. She used to cry, but now she sits with them and looks, without even asking. I think this has made it a bit easier for me as well. Not knowing how to express when she’s high or low means that she can become aggressive at any time and may start hitting or fighting with her fellow playmates resulting in various playground issues. Days when she has had a high night or woke up very low, she’s extra clingy and miserable.  I need to judge her mood and sometimes just cuddle her until she feels okay.

Almost everything in our lives has changed, especially our eating habits as a family.  I am always trying new low or no carb recipes for her. We still do eat certain things, but if my husband and I are eating something she can’t eat we will do so whilst she is asleep or distracted. Before doing anything I always consider Zunaira first- whether we need to pack extra insulin and snacks or whether it is best to avoid certain things altogether. Even a trip to the mall will require us to pack a snack bag which includes her glucose meter, insulin, snacks and water. She has to snack a certain amount and at the correct time throughout the day to maintain her levels. She can’t snack too much either. These are just our challenges, but every family is different and each of them has their own set of challenges.

My advice for other parents with children who suffer from Type 1 diabetes is this: It isn’t yours or your kids’ fault. Don’t beat yourself up about it as each day is different. Find a support group and a support person as only the diabetic and the caregivers know how it really feels. Family and friends may understand but that understanding is limited. Being a caregiver can be very isolating and very stressful so a support group or person is very beneficial. For some reason, you will feel the need to distance yourself from many people, friends and family, accept this as this is a time for growth, understanding and healing and you will need to remove toxic people from your life. In the same breath you will also meet new people who are genuinely going to stay in your little circle. Meeting or chatting to other Type 1 parents or caregivers is so comforting and these people will be there to support you and lift you up at any given time. We are a tribe. Be very supportive of your child and don’t ever make him/her feel at fault or feel like they are to blame for a high or low.  I spoke to a lady once soon after Zunaira was diagnosed and she emphasised the importance of being supportive of our kids because the last thing that we want and need is for us to be so harsh and strict that the child begins to lie and becomes sneaky with eating or testing. Remember that the caregiver may get exhausted or feel many feelings, but the diabetic is actually having a more difficult time, they are living with diabetes emotionally and physically. As a caregiver, you also need to take care of yourself- REMEMBER THAT. Also, just be grateful for each day as we never know what the next day may bring.

I pray for a miraculous cure from the Almighty. I pray that she realises how special and loved she is by her parents. I pray that she understands that she was chosen to fight this battle because God knows she is a warrior and brave enough for this challenge. I hope that she never allows this diagnosis to determine her life, she can and will accomplish whatever she wants to in life. The sky is the limit and with good care and maintenance, nothing can stop her from achieving her dreams and goals. I also pray that she has the strength and patience throughout life to manage her condition and to never ever give up and allow diabetes to win because some days can really rip the mat out from under her feet. I also hope that she will always remember that she is not in this alone. Her father and I will always support her in whichever way that she needs us. I pray that throughout her life, she will always have people who will love and support her. My fears are many… I fear her highs and lows. I fear that we may not take proper care of her or that one day when she has to be responsible for her own health; she may feel like giving up on herself.

 

Signs to look out for:

Hyperglycaemia refers to chronically high glucose levels

  1. Increased thirst
  2. Extreme hunger
  3. Feeling exhausted
  4. Blurred vision
  5. Losing weight without trying
  6. Excessive and frequent urination
  7. Headaches
  8. Fruity breath

 

 

 

 

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