On being a parent, diabetes complications, worrying, holding hands & looking after each other

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Being a parent is wonderful, scary and challenging, especially when your child has diabetes,( image via Pinterest)

Being a parent is one of the most wonderful, terrifying, complicated, rewarding, challenging and crazy things you will ever do. As mum to three boys I can attest to that! I also know, as a person who has type 1 diabetes from seeing, experiencing and now looking back as a parent myself, what extra hell my parents went through when I was diagnosed as a 12 year old. I also know that we made it. We all survived my turbulent teenage and young adult years and we are all reasonably sane and intact.

I am sure my parents would tell you about all the ups and downs from their perspective and it would be different to mine. But in some ways, it would be the same. When someone you love gets diabetes, it can be like you have also been diagnosed, especially if that person is your child. This must be similar for all sorts of conditions and I know from living through a number of health problems with my children that I felt their pain and experienced many emotions and worries. I still do. Being a parent is all about caring more deeply about these little humans than you will ever care about anyone else.

Parents with diabetes, just like their kids, don’t get a break, they don’t get to stop thinking about their child’s BGL’s, whether they are high or low, what is happening at school, how to manage school camps, sport, sleep overs, parties, growing up, leaving home. They don’t get to watch their child spontaneous and carefree. They get to watch their child plan every move of every day. They get to sit each night by their child’s bedside to wake them for an overnight “finger stick”. They get to drive to the school every time their child has a low or high reading or something is just not right.

If you are the parent of a child with diabetes you will understand. There is no rest, no time out, no place to escape diabetes. Some parents feel they can not trust anyone else with their child. They become burnt out,lost, isolated, emotionally wrecked. And like the article from yesterday on the blog discussing worry about complications leading to diabetes distress, parents worry too.

If your child has diabetes, I wonder how much time you spend worrying about diabetes complications? Whether short term ones like hypos and hypers, or long term ones like blindness, kidney damage, or neuropathy? The important thing to remember is that we have wonderful management options for people with type 1 diabetes and when well managed, diabetes does not have to lead to complications in the long term. The other thing is that studies have shown that even small improvements in diabetes control can make a difference to the risk of long-term complications.

To reduce the risk of complications, it’s important to:

• Follow the management plan advised by your diabetes team, this includes regular BGL checks, with appropriate insulin adjustment to match your child’s lifestyle. But make sure you work with your child around when and who will do the checks, plan for sick days and down days and days when they may want a little “break” from checking, or checking so much, remember they will be doing this for life so they need to develop a positive relationship wth their diabetes.
• Aim for BGL’s mostly within the range recommended for your child’s age. This varies from age group to age group and child to child. Sometimes they need to be able to let the targets slip a little, and then come back to them. Remember this is ok on an occasional basis and allowing this flexibility also makes it easier for you and your child overall.
• Visit your diabetes team at least every three months, this should include a HbA1c test to determine overall blood glucose control so you can get an overall view and work with your team on changes as your child grows.
• Encourage regular physical activity that is fun and that they want to participate in. All kids are different so help them to find what they enjoy best. Do things as a family as well – it is good for all of you!
• Encourage healthy eating habits and again this should be for the whole family but remember there is no longer a “diabetic diet” and children need a variety of foods and to learn how to manage the occasional high sugar, high fat junk food that all kids will be exposed to.
• Ensure your child or teenager attends regular complications screening as scheduled. The commencement of complications screening depends on your child’s age and for how long they have had diabetes. Your child’s doctor can advise you when complications screening should commence. This means things can be picked up early and managed so it is very important.
• Discourage habits that can lead to the progression of complications eg. smoking. This can be tricky in teenage years and open communication about the challenges of peer pressures are important.

Most importantly you and your child need to communicate to ensure each person knows who is responsible for what in regards to diabetes management. The gradual handing over of management needs to be negotiated and we know that teenagers still need and benefit from parental involvement that is negotiated and shared. Keep the lines of communication open about all aspects of life and let them be a child and later, a teen and young adult. They need a life with diabetes, not diabetes with a little bit of life.

Here is a wonderful letter shared by one of our community members whose son, now 18, was diagnosed at 4 years of age.  I think this says it all. Her son graduated from school last year and she was terrified of what lay ahead for him in the next exciting stage of his life.  She said his  last day of school proved quiet emotional for her.  She watched the ceremonial  traditions feeling numb and crying and ” really needed to pull herself together, get her feelings out there – what better way than with words” . A status on Facebook proved very therapeutic! She is very happy and relieved he survived schoolies and now works full time.  Here is her letter to her son.

 A letter to my son

By Jane

 “Today my funny, witty, good-natured (sardonic) son, Darcy, graduated after 12 years of formal education. Darcy is special because his life is governed, ruled by blood sugar levels, carbohydrate counting, insulin doses and exercise. 

Darcy was diagnosed with Type 1 diabetes just 2 months after his 4th birthday on March 16, 1999. Diabetes is an unrelenting, life controlling disease that is severely and frustratingly misunderstood by those who don’t live with the disease 24/7. Darcy does not have diabetes because he ate too much sugar, nor does he need to stay away from sugar. Darcy needs to monitor, measure and calculate every day everything he does to lead a life without high and low blood sugar levels causing insidious damage to every part of his young body.

Over the years Darcy and I have seen endocrinologists, dietitians, diabetic educators, psychologists and psychiatrists. Every three months I sit in diabetes clinic at the RBH and give thanks that all that is broken on my boy’s body is a minute part of his pancreas as I sit among the children with broken, twisted bodies in wheelchairs pushed along by loving parents that look so tired you want to weep, children with such horrific burns all you can see is one ear poking from the bandages covering the entire body, the genetic disorders with names that are unpronounceable, toddlers with chemotherapy tubes taped to their cheeks.

Not for one moment think I am the model of the perfect mother of a Type 1 diabetic. I have yelled, cursed and name called when my grumpy 16 year old flatly refused to do blood sugar levels or needles. The fear that pumps through your veins that your child is doing irreparable damage to his young body challenges logical thinking and severely impairs calm parenting.

So Darcy, my darling, uncomplaining boy, I hope that your family, teachers and dedicated health professionals have equipped you to lead a healthy, happy, successful life, enjoy schoolies and as your head of college suggested – stay with your friends, hold hands and look after each other.”

Thanks so much to Jane for sharing- please add your comments below as well. 

And remember, most children with diabetes grow up and become adults who are totally amazing! Make sure your care for yourself as you grow with them.

Helen Edwards

6 Comments

  1. Paula Macey on August 13, 2013 at 9:35 am

    I absolutely needed to read this article today. It is exactly our journey. Thankyou!

    • Helen-Edwards on August 13, 2013 at 9:44 am

      that is so good to hear. Glad you enjoyed it and wishing you well on your ongoing journey 🙂

  2. Jackie G on August 13, 2013 at 3:29 pm

    Thanks Helen. A great post! It is great to hear a T1 adults perspective. I have been very lucky to have had a few wonderful role models for my daughter so far (she is only 4).

    • Helen-Edwards on August 13, 2013 at 3:41 pm

      thanks Jackie, it is so nice to hear that from a mum at the beginning of her journey and it sounds like you have great people around you and your daughter, thanks for sharing 🙂

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