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A poem from a diabetes Mum: I lost a layer of skin

August 6, 2014 by Helen-Edwards Leave a Comment

One of our members has written this beautiful and moving poem about her child with diabetes – she has agreed to share it. We are sure many of you will identify.
thank you Maureen
xx

I lost a layer of skin
I lost a layer of skin as we entered the hospital on the day of the diagnosis.

I didn’t feel it fall off.
It certainly didn’t hurt.
It gently slipped off with less than a whisper, unnoticed, like a soft, satin scarf.
I wish I had noticed it leaving.

I imagine it floating gently over the roofs of nearby houses,
carrying with it the half formed dreams I alone held for my child,
leaving behind only rawness.

Over days, weeks and months a strange new layer has grown in its place.
It’s a bizarre contradiction – tough yet sensitive.

Watching the drops of intense ruby blood makes it want to shred itself
Glimpsing needles pierce the stomach where raspberries were once blown makes it ache.
seeing the sombre eyes of a child learning to cope leaves a hollowness.
Dragging a weary body through night times of wakefulness leaves it feeling prickly.

It’s certainly more careworn than the layer it replaces
but it’s strong and it needs to be.
It bears the brave scars of battles: some internal and silent, some of epic proportions.
Hiding the multitude of maternal fears which largely remain unshared has hardened the carapace.

It has to be tough for the times when it’s all too much for a child who just wants the old normal.
The old normal isn’t coming back.

I like to imagine
that I’ll find that layer of skin again some day and fashion a purpose for it in this new existence,
for there is hope.

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#Moments of #wonderful

March 28, 2014 by helwild 3 Comments

Yesterday my littlest sister flew from Melbourne to Adelaide to visit our mother, who is 91 & living with dementia in a Nursing Home. We were fortunate to be able to catch up for lunch, together with two of our other sisters, a gorgeous niece & a precious 3 yr old great niece. We actually took some photos which I will post on our Dine In for Diabetes page, when I get the time! There were 3 pwd’s at the table. LOL.That was an explosion of wonderful!

My morning had already held some good moments. I learned a long time ago that there is wonderful in the minutiae, the small details of life; a rose, a bright morning, a child putting his hand in mine spontaneously. Yesterday morning was very special. Before meeting my sisters etc for lunch, I was able to represent Diabetes Counselling Online as a Volunteer at a meeting with Channel 9 Telethon.

There were about 50 of us visiting Channel 9, representing 21 Charities. First we had a tour of the News studio, where we were treated to an “insiders’ view’ behind the scenes of how the News & Weather are put together . Then we were informed in a very professional way of all the exciting opportunities in the year ahead for Volunteering & raising funds for our own Charities. It helped that I was able to park my car in leafy North Adelaide, a large leafy square away from the studios, so that I walked across wet spongy grass, amongst roses in bright Autumn sunshine to my meeting.

I picked one of those roses, such a metaphor for life, the thorny stem, the explosion of soft scented colour at the apex. I added it to the brown paper bag that held my sister’s birthday gifts.

At lunch, one of my sisters gave us all a wonderful experience. Before Christmas, which was the first one for years where we had not held a large family gathering, we had each handed over gifts to be passed on to the children in the family. Three of those gifts had lodged at Vivienne’s home since then. They were Ruby’s gifts. Each had been bought with love. And Ruby was at lunch! So we 3 great Aunts got to give Ruby her gifts personally. Each gift was opened & appreciated with great solemnity, awe, & happiness. Her little face beamed with the unexpected delight of it all. For the rest of the day, the hearts of us old great Aunts, Ruby’s Grandma, & Ruby’s Mum were warmed by her childish sense of wonder & joy.

We said our goodbyes & headed off to our afternoons, work, driving home, & my littlest sister to the Nursing Home. We all knew there would be difficulty & sadness involved in her visit, & wished her well & thanked her.

In the early evening, I sent my littlest sister an SMS. I hoped she had a good flight, & that her visit had not been too hard. She responded: ‘There were moments of wonderful”. I knew exactly what she meant.

Two days before I had experienced some ‘moments of wonderful’ with Mum. I had rung before visiting, & Mum had spoken on the phone. She said she was fine, but was very annoyed about the weather, which was seasonably cool (it is autumn, after all). I said, yes, it is cool today, it might rain, & she replied, “I know, & I was going to play Tennis.” Mum uses a wheelchair &/or a wheelie walker to get around, her tennis days are at least 60 years behind her. But I loved her feisty response to the weather. I always dread speaking to Mum on the phone, she says, “I can’t hear you. I’m putting the phone down.” Which she does. Literally. Without hanging up. This phone call made me laugh out loud, although of course I sympathised about missing out on the Tennis, & said I’d be there to visit in half an hour.

My sister would have had some ‘moments of wonderful’ yesterday where Mum was affectionate & loving, where she appreciated that Kathryn was wheeling her about, trying to make her happy, & where she appreciated the long exhausting trip Kathryn was putting in just to visit Mum. There would also have been lots of difficult minutes & half hours, as Mum’s dementia means she can’t remember new things. Like being visited by her loving daughters. Or the conversation a moment ago where all her fears & concerns were explained & put to rest. That is a great sadness. So the metaphor of the rose fits a visit to Mum very well.

On two mornings this week I have had some tiny visitors to my garden, bringing me some tiny ‘moments of wonderful’. Little native birds, White Eyes, hanging upside down in the wild fennel I grow just for them. Apparently flowers & seeds are equally tasty. I can watch them through my bedroom window, lying in bed in the morning light.

Living with diabetes is never easy. We cannot forget about it, or ignore it: if we do so it is at our peril. The stress is very great. We have to be responsible, sensible, pro active. We can get so caught up in our problems, complexities, responsibilities that we forget to notice the ‘moments of wonderful’ that happen almost every day. It’s easy to focus on pain, on difficulty, on practicality; on guilt, on wanting; on dissatisfaction, anger, or resentment. The negatives clamour for our attention. By noticing the small ‘moments of wonderful’, we become intrinsically peaceful, more accepting, philosophical. We become Mindful, we remember to live in the moment. Those difficult things become easier to bear, to manage, to work through, to let go; or to change.

Helen Wilde

Helen is a Senior Counsellor with Diabetes Counselling Online, Teacher, and parent to someone living with Type 1 diabetes since 1979. She has been living with Type 2 diabetes herself since 2001.

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It’s not easy to be me- journeying to the #self: how #melancholy is part of #happiness

March 13, 2014 by helwild 2 Comments

Our inalienable rights are ‘Life, Liberty & the Pursuit of Happiness’- nothing in there about Health, or Wellness, right?

I was counselling someone today, someone who is actually older than I am, despite me having just had a birthday & feeling extremely ‘senior’ as a result. LOL! I had something of a ‘light bulb’ moment. I thought, it’s not depression that I live with, it’s melancholy. And is that such a bad thing? Once you realise your own mortality, which for many people is actually before the age of 10, isn’t melancholy part of the background to our lives? It’s not a word that is used or celebrated nowadays, it could even be called ‘unfashionable’ to acknowledge melancholy. It seems that you have to be always ‘happy’ to be considered ‘normal’: if you’re not obviously happy, then you must be ‘depressed’. I don’t believe that’s true.

Although melancholy gets a bad press sometimes, being equated with deep depression, it has also a more poetic & lighter side. Many poets, composers, artists, writers from various cultures have felt melancholy. ‘Melancholy is sadness that has taken on lightness’ by Italo Calvino ‘There is no such thing as happiness, only lesser shades of melancholy.’ Robert Burton. ‘Sweet bird, that shun the noise of folly, most musical, most melancholy!’ John Milton and ‘There is no coming to consciousness without pain.’ Carl Jung. When you can acknowledge that it’s actually OK to be sad, not permanently deliriously happy, to be in fact somewhat melancholy, you can accept your state of being & find that ‘happiness’ & ‘beauty’ can encompass melancholy. ‘I don’t want to get to the end of my life and find that I just lived the length of it. I want to have lived the width of it as well.’ Dianne Ackerman

Of course that melancholy can be a spiderweb, it can creep into everything, it still takes work to maintain calm in the midst of chaos: to maintain serenity, joy. The tools of mental wellness remain the same. We are all living with diabetes. Now that’s just not fair. It basically sucks. At the same time, many of us are trying so hard to ‘live our lives to the full’, whatever that may mean. Whether it’s helping others, striving for a physical ‘high’ that will reward us, striving to be successful in a career, or in love, earning more money to purchase whatever it seems we want; our time is busy busy busy. Multi tasking is a way of life. We are attached to screens for much of our waking time. We are ‘communicating’ with more people than ever before in the history of the world. We need to take ‘down time’, & to use that time to be present in the real world. This might be as simple as exchanging our gym session for exercise outdoors, appreciating the world as it passes us by. It might be turning off screens for a 2 hour waking period every day: or for an entire day a week, & focussing on the people we are with & the world around us. Or to be alone. It might be remembering we have more than 3 senses: more than our eyes, ears & fingers. It might be reminding ourselves that we are more than our diabetes, or our child’s diabetes, that we still have other interests, & other people in our lives. It might be focussing on Breathing, on silence, on music: on watching your child sleep. It might be preparing and eating a meal with pleasure, not guilt, sharing our pleasure with others, not with self judgement or self criticism. It might be that we need to give ourselves a break, to celebrate how hard we are trying, to let go of guilt or shame. We need to use that wise voice in our head to counsel ourselves as we would another, to be kind to ourselves as to another, to say, ‘It’s OK, nobody’s perfect, you’re doing OK’.

It can be hard being Superman, or Superwoman. Even Superman feels melancholy sometimes.

Helen Wilde

Helen is a Senior Counsellor with Diabetes Counselling Online, Teacher, parent of a person living with Type 1 diabetes since 1979, & living with Type 2 diabetes herself since 2002.

You may find it helpful to talk with one of our team by visiting http://www.diabetescounselling.com.au/welcome/our-team-counsellors-ambassadors/

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#Control: to Major Tom: take your protein pills & put your helmet on..

February 13, 2014 by helwild 2 Comments

Control: as diabetics this is a word that can rule our every waking minute. It can be the word our health care professional(s) use to ‘scare’ us into ‘compliance. It can be the grinding slog that makes us feel, “When do I get a break!”

If we do let go of ‘control’, even for a day, we can feel as though every dire prediction that has ever been pointed our way will immediately come crashing down on us. All those fears that we hold inside, or that spill out if we ever get the chance to share with someone who ‘gets’ us, will come to pass if we just for even a short time ‘take our eyes off the ball’.

Yes, micro management of our diabetes is useful in managing our overall health. Yet there are times when it’s actually OK to let our BGL run a little high for half a day, or even a day. If we’re not pregnant, & we plan to do some vigorous exercise, it even makes sense to! It’s also OK to eat occasionally as though we do not have diabetes, although personally I prefer to eat the healthy foods that are also beneficial for ‘control’ of my type 2 diabetes! LOL! I am not a ‘jar of Nutella’ kind of girl. But I do enjoy the occasional Morning coffee treat, or lush dessert.

As the Mum of a teen with Type 1 diabetes, I had to learn to let go of Control. Not that I ever really had it, it was always my illusion, monitoring what was visible to me, managing my responsibility to buy & prepare food for the whole family. I know now that my teen made up logbooks of bgl’s, ate food away from home that I would not have ‘approved’, & didn’t always inject insulin nor check bgl’s when the HCP’s had instructed her to. Life got in the way. Yet she is doing just fine now, & I’m glad that she ‘normalised’ her adolescence to some extent. Why should we miss out totally on life’s rich tapestry because of a health condition?

Being truly ‘in control’ means being in charge of our own life, being in the Drivers’ seat: & ALSO that diabetes is not front & centre in our every waking moment. There are other things in life that are more interesting, more enjoyable, more beneficial. How can we reach that stage, which in a way is part of ‘acceptance’? It can be as simple as setting up routines that work for us, & following them in a way that is comfortable with our lifestyle. That might include having our Health Care team appointments slotted in & sorted for the year, rather than having a constant nagging thought that ‘I must make that appointment’. In getting groceries home delivered, instead of takeaway meals. In storing & managing our insulin, test strips, oral medications so that we never run out or have any go ‘out of date’. Importantly though, in ‘not sweating the small stuff’,& in not regretting decisions & behaviours that are in the past & can’t be undone. No shame, no Guilt.

happiness comes from letting go of guilt

Remember that as David Bowie sang “Planet Earth is Blue & There’s nothing I can do”

If you prefer Life with a strong dose of Reality, check out this more recent video version of Major Tom.Humanity can soar, you don’t have to give up your shot at the Moon just because you have diabetes. Happiness, a good life, smelling the roses. Enjoy the journey, & Open up the Sky- I know we’ll be just fine..when we Learn to Love the ride.

Helen Wilde

Helen is a long term Senior Counsellor with Diabetes Counselling Online, Teacher, mother of a Type 1 diabetic since 1979, Type 2 herself since 2001. Talking with one of our team may help you to work out whether your focus on control represents your fear & help you to learn strategies for letting go of some of that fear.

Try this link: http://www.diabetescounselling.com.au/counselling-request/

Helen is a long term Senior Counsellor with Diabetes Counselling Online, Teacher, mother of a type 1 diabetic for 34 years and a type 2 diabetic herself for 12 years.Talking with one of our team may help you work out what your barriers are and how to develop a plan of action to work through, over or under the barriers! – See more at: http://www.diabetescounselling.com.au/diabetes-and-weight-management/the-way-you-move/#sthash.77Hq1QSm.dpuf

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An empty nest or a full one?

January 22, 2014 by Helen-Edwards 2 Comments

Are you a parent? And have any of your children grown up? The age at which kids grow up these days is questionable and very different to when my generation were young (MY generation, does that make me sound old?!). I moved out of home at 18 as I had to go to the city to study. It is not unusual for young adults to stay at home well into their 20′s now. Do you think the old “empty nest” syndrome hits no matter when they move out? Or are parents throwing parties of celebration when their not so young children leave the nest? What is your experience?

I am very lucky. I have three beautiful sons. My oldest, Cameron, turned 20 on 28th October last year. My youngest, Maxwell, is only 5 and my middle son James, turns 15 in March this year. I was told I would never have healthy babies when I was diagnosed with type 1 diabetes. That if I dared to try they would be deformed or stillborn…..I was a pretty mixed up, screwed up teenager for a long time after that. No wonder.

But as I am apt to do, I got on with life. I decided I was going to have babies. And they would be fine. And, they were. I did spend 6 weeks straight and numerous other times in hospital with my first and second pregnancies. They both had some issues of low blood glucose from my diabetes after birth requiring extra help. But they were both fine after a few days, except for serious reflux (the second baby requiring surgery to tie his stomach up at 20 months and a nightmare few years, but that is another post!).

Amazingly my last pregnancy, despite taking 9 years to come and being told I could not have any more children, and coming just after suffering a miscarriage, (totally devastating after a 9 year attempt) thanks to being armed with the new information through my diabetes work, an Insulin Pump, and bloody hard work, required no hospital admissions during the pregnancy and no special care for baby after delivery. A true miracle and I was 40 by that stage.

Did you have trouble with a pregnancy? If so you will know how hard it is to want something so and not be able to get it. To yearn. To grieve. And if you have done so and then had this miracle child, you will know how powerful and amazing and lasting this experience is too. They are all special, all amazing, each and every one of them.

I have had 20 years of busy boy life with many more to come. My oldest has not been home much the past 6 months or so. He has a girlfriend and she is lovely and as people in love are apt to do, he stays with her most of the time. He announced to us a couple of weeks ago, that he was making the big move out. Yep, going “defacto”. Funny, we had been discussing it ourselves and what we would do with the extra room when he eventually did move out, dreaming about room makeovers and second lounge areas and guest rooms. Part of me wanted that space, part of me wanted my little boy to stay home forever… My first born.

He is the one who showed me what true love really is, the love that overwhelmed me, (once I got over the 24 hours of vomiting from the c section drugs), as I held him in my arms the next morning, just the two of us in the quietness of the early hours. “This is really my baby” I thought as I stared into his eyes. And there it began. He is the one who I spent nearly 2 years as a single mum with after his dad and I broke up when he was just 9 months old (that’s another whole other post!). The one who held me to the ground when I suffered post natal depression. The one who shared a bedroom with me in our little flat and I would wake up in the morning to see him silently waiting, standing up in his cot, the sunshine on his golden curls, smiling at me, waiting for me, willing me to wake up. The one who made us laugh and laugh, who loved Ballroom Blitz so much when he was 5 my husband made him a special “tape for 5 year olds” where it was on every second track! The one who had to go back and forth between parents, leaving me as a very small child, a baby really, to go off to his dad. The one who took everything on the chin and stood tall.

This child is a real “oldest” child. He is such a gracious young man. So steady, so generous, so easy going. He is considerate and caring. He loves deeply and he has picked well in his partner. Why would he have done anything else.

So, today we moved him out. All of us with the trailer and my 5 year old trying to carry furniture and bits and pieces, making a cape out of the sheet holding the stuff down in the trailer. I drove behind in his car, while he got a lesson from trailer towing from my Hubby, all alone and spent most of the trip thinking, this is the first of my children leaving home. This is where I start to feel the start of empty nest. How am I meant to feel here? I remember the feeling when everyone used to be at home, all of my boys, the cats tucked up in their beds too, all safe inside the house, sleeping. I would lie there and feel happy and secure knowing all of my little ones were safe under my watch. And now I can not do that for this child. Now he must make his own way.

Yes my nest is anything but empty. And even when all of my children have moved on, it will still not be empty. Not really. There may be a piece missing from the picture, but he is not really missing, just shifted.

My oldest son moved out today. I did have a tear. I did feel a little bit like someone had died as I started to clean out the “pit” as we affectionately call it, in readiness for another renovation (more on that soon!). But my nest is full. Definitely full. Full of memories and laughter and card games and walks in the park. Road trips and beach holidays and Christmas Days and cuddles. Full of tears and arguments and trying to pull teenagers out of bed. Homework and kindy and pictures and dreams.

My nest is full of love. Life. Living.

I have done well. That is how I feel. I have grown a young man. And a damn fine one. And in fact as my husband remarked at Christmas this year, our nest will in fact be growing larger, as we welcome partners and perhaps grandchildren into our lives over the years to come. I like that a lot.

Here is a poem I wrote when I was pregnant with Cameron after already being in hospital for 6 weeks straight. I did not know the sex of the baby. Waiting was very hard when it felt like I had waited my whole life for him to arrive. I wrote a lot of poetry that year. I even turned this one into a song.

Waiting – Helen Edwards 21/10/1993

Waiting

It seems like I’ve been waiting for you

since I have known about your existence

and long before.

I have imagined your face

your hands, your smile.

Since feeling you grow

and move within me,

I have become more impatient

to know you fully.

I am anticipating you –

your potential

to discover your world

and for the world to discover you.

I want to show you beauty

and to teach you about how wonderful

your life can be.

I am anxious to touch you,

hold you and give you all my love.

I am waiting to meet you

my beautiful child,

the most important thing

I have waited for in my life.

Have you had any children leave home? What was it like for you? I would love to hear

Helen

Helen Edwards

Founder and Director Diabetes Counselling Online, person with type 1 diabetes for 35 years,mum of 3 and blogger at www.recycledinteriors.org

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