#Parenting a child with #diabetes #struggles & #rewards: owning your own #lifetime

This is a blog I have wanted to write for some time. As the parent of a now grown up child with diabetes, I feel a ‘special’ bond with other parents. Because of this, I am one of the moderators of the Facebook Closed group Parents of kids with diabetes. Almost every day I read  & respond to heroic, wonderful, ordinary, or desperate stories of parents, ordinary people, most of them with no prior knowledge or experience of life with diabetes. Some are the parents of newly diagnosed infants. Those of us diagnosed as adults, no matter what type of diabetes, we know the emotional rollercoaster that diagnosis brings. Imagine that diagnosis being pronounced on your baby or your child.

A child's trust

A child’s trust

The journey of acceptance of the diagnosis of diabetes is often described as the journey of loss, a journey through the stages of mourning. Some people diagnosed, or some partners of people who are diagnosed, get ‘stuck’ in one of the very earliest of stages, Disbelief & or Denial. They may delay or refuse the suggested treatment or advice for management. They may hide their diagnosis from those around them. That stage is bypassed in a Blink for the parent whose child is diagnosed. From lasting perhaps years, this stage is reduced to a few moments, a few hours, a day, a couple of days. From then on, ‘Disbelief’ & ‘Denial’ do not exist. We leap straight to fear, panic, guilt; into anger, blame, shame. We also leap straight into fierce Warrior protector mode. For most of us, our fear has to be submerged into Action, Compliance, & Learning, all embedded in a fierce protective mode that overrides everything else. Our own sadness, mourning, self blame must be submerged under the need to be the responsible Parent, the one who will manage the journey of our precious child into adulthood with lifelong chronic disease. I imagine the journey is similar to that of any parent whose child is diagnosed with a chronic disease or condition.

One of the differences lies in the management. Daily, a parent must monitor & restrict or ‘manage’ the food intake of their child. When birthday parties or celebratory occasions come up, the decisions about how to manage party food become an obsession. We handle insulin, a powerful hormone with great responsibilities attached, several times a day. We check glucose levels, ketones. We must ensure that we never run out of any supplies. We make & keep appointments with a range of HCP’s. We keep records, or trust our children to. We learn jargon. We FB, we Tweet, we SoMe. We must budget to afford all this, & although thankfully in Australia parents do receive some government assistance with costs whilst their children are under 16, in some countries this is a crushing, unsustainable burden. Our sleep is interrupted, sometimes many times a night, for the duration of the time our child with diabetes lives under our roof; and in the case of our daughters, possibly again when (if) (joyfully; & scarily) pregnancy occurs. We become master mathematicians & pseudo nurses & endocrinologists, calculating complex equations several times a day, carbs, insulin, bgl ratios. measurements & the needle

Another difference between being diagnosed yourself & having your child diagnosed is the type & level of Guilt & Self Blame that occurs. For ourselves, it becomes tied up in not talking about our diabetes, in hiding it so that we check our bgl’s or inject our insulin or take our oral medication very privately. We may even not do these things at all if a social occasion comes up. When it’s your child, ‘compliance’ is not an issue. We follow our instructions to the letter, to the minute. We advocate, we speak out, we question, we seek knowledge, advice, support. We talk to teachers, schools, principals, classrooms full of children. For many parents, their Guilt & Self Blame becomes lifelong, but is submerged into supporting a search for a cure. This is absolutely normal. It gives Hope, which is so wonderful. However, for some people supporting a cause such as this can become obsessive, preventing Acceptance, & interfering with normal life, & just getting on with managing the diabetes as best as possible.

It can seem impossible to set aside time for managing to care for ourselves. We can feel as though we are too tired, too busy, too responsible to take some time out just to be ourselves, just to breathe & enjoy our lives. We feel driven to Act, to do. The younger the child, & the more young siblings there are, the more difficult this becomes. Many parents are fortunate in having the practical support of a partner, grandparents, their own siblings. Others have friends in the ‘real’ world as well as in the virtual world. You may have access to good Child Care, where people are already trained or are open to be trained in managing your child’s health condition. It is hard to accept that it is not selfish to use such practical help to simply ‘take a sanity break’. However, doing so can actually be a wise management strategy. By allowing someone else to take care of our child with diabetes for a half a day, a day, a ‘sleepover’, a weekend; we are teaching everyone concerned that if for some reason we are unavailable, they can manage, & manage well. We’re teaching our child that there are safe people & places in the world, & as they get older, that they are clever, brave, strong; and normal. They can be away from us, & we can be away from them. We will come back, & we will all be OK. And we’re teaching ourselves that our lives exist outside our Parenting role, a role which changes over time for everyone, regardless of any health condition of their child.

What activities do you currently do that are solely for yourself? Do you walk, run, climb, meet a friend, visit a library, play a sport, go to the gym, sew, go to the cinema, study, paint, garden, play with animals, swim, do yoga, ski, ride a motorbike or bicycle, box, write a diary or blog? What have you stopped doing that you would like to go back to? What have you always wanted to do or try that you have not yet tried? Do you know how to practice relaxation, controlled breathing, or any stress relief practices?

Always remember, you are a Parent of a child, & you are a Person. These roles do not exclude or preclude each other. Your life is yours, you own it. We have a short time on this earth, & our time is Now.

Remain in Light. Talking Heads

carpe diem

Helen Wilde

Helen is a Senior Counsellor with Diabetes Counselling online, a Teacher, & the Parent of a person living with Type 1 diabetes since 1979. She has lived with Type 2 diabetes herself since 2001.

10 Comments

  1. helwild on March 20, 2014 at 7:07 pm

    Just recording some of the responses from the Facebook group.

    Kelly: Helene Wild….you are so right I read your blog through tears. Thank you

    Margaret: Helene, that really sums it up for us as parents.

    Jihan: That is such an accurate description of what we go through. It did make me teary. It’s good to know that everyone is experiencing the same emotional roller coaster

    • helwild on March 20, 2014 at 7:08 pm

      Thank you so much for responding. 🙂

  2. helwild on March 20, 2014 at 7:50 pm

    FB comment: POK group: Kelly B: Could not have said it better myself

    Thanks Kelly.:-)

  3. mel on March 20, 2014 at 10:57 pm

    Spot on – this is our life parenting a child with T1D! Thank you!

  4. Helen Edwards on March 21, 2014 at 11:01 am

    brilliant post, made me cry, here’s to all the parents out there xx

  5. helwild on March 21, 2014 at 4:26 pm

    Thanks so much, Mel & Helen. I am glad my words and thoughts connected with you. 🙂

  6. Imagine_David on March 21, 2014 at 6:42 pm

    Thanks Helen for this wonderful post. Shaing the experience certainly helps parents not to feel so alone with this Horrible D

    • helwild on March 21, 2014 at 7:27 pm

      🙂 thanks David. I think I had something of a head start in my journey because my first cousin in England is living with type 1, she was even younger than my daughter at diagnosis. When we visited their home, just as part of our 5 month European vacation, my cousin was a little girl still, & my own daughter was still 4 years away from her own diagnosis. My aunt was a Nurse, a strong, brisk woman, years older than me. Her approach was so calm and sensible. We were interested of course, but had no thought that it could happen to us. Although we were back in Australia 4 years later when the diagnosis came, I think it did help that my cousin in England had been so calm in showing us how she managed, & had learned so much from such a calm, steady mother. I try to follow Aunt Dorothy’s example.

  7. Kerrie on March 23, 2014 at 4:24 pm

    Only a parent with a child with the diagnosis of Type 1 Diabetes could write such true words – many may have Type1 whom are decision makers in the big Diabetes Picture but not many are parents to children….they dont walk our same path – lets hope they all read your Blog – Thank you 🙂 Type1 has been part of our families life since aug 2009 –

    • helwild on March 24, 2014 at 10:48 am

      Oh thanks Kerrie! I’m so glad you could relate. I hope my blog gave you some ideas about how you can manage the daily stress of caring for your child, & ideas about taking a little time for yourself too. We are all warriors for our children, & we are people too. It’s hard sometimes to give ourselves a little space.
      I’m also a big believer in the power of advocacy, & although I would love all Australian children diagnosed with Type 1 diabetes to be granted a Health Care card for life, I also am acutely aware that in some countries there are children diagnosed who have no or limited access to insulin. I hope the day will come when all children across the world will have daily access to reliable, safe supplies.
      Thanks again,
      Helen

Share your thoughts