Prior to the 21/01/19, diabetes was a thing that never really crossed my mind. My husband and I always ate healthy and were bringing our 3 children up the same way. We are both active and our children are following in our footsteps. Diabetes only happened to old people or those that ate too much sugar and were unfit, right?
On 21 January 2019 my 8 year old son Harvey was diagnosed with Type 1 diabetes. To say we were shocked was an understatement. Fear of the unknown gripped us and initially, I started to blame myself for not being healthier. I soon learned that nothing we could have done would have prevented this. Harvey’s body was attacking his own pancreas and killing off his insulin producing cells. There is no known reason why this happened to him. It just did. We have no family history of Type 1 Diabetes.
In the month leading up to Harvey’s diagnosis, we noticed some changes in him, but nothing consistent, and these symptoms could also be attributed to something else. His thirst could be explained by the warmer weather. His tiredness and irritability could be explained by it being the end of term at school…most kids were tired at this time of year. It was also the Christmas period and we were having late nights. It was only when his thirst became unquenchable, the bed wetting started, the frequent toilet stops, having tantrums over the slightest thing (Harvey was the cool easy going one in the family), having to be carried to walk less than 1km, his hunger, and looking back at a photo I had taken of him the day before I noticed just how drawn and emaciated his face looked, that all these symptoms swirled around in my head, and I knew something serious was happening to my boy. I googled the symptoms and Diabetes kept coming up. I didn’t really know what this meant, or just how serious it is, but my heart was sinking. Being interstate on a family holiday at the time, I rushed him to the local Pharmacy, and requested a finger prick test. The test showed his blood glucose levels of 24, and that was even after 2 hours of fasting. We rushed him to Emergency and received this life changing diagnosis
What diabetes means to me now
Diabetes on the outside looks manageable, and yes, at times it is. Most people see a healthy, energetic boy running around. They don’t understand that for most part, diabetes sucks. It is a physical and emotional burden, that follows you around where ever you go, and constantly needs your attention…..like, when you are exhausted or sick, or just have a million and one things to do….as Harvey is about to do something fun…..at 2:00am……during class time….when I have to get my daughter to a party she has really been looking forward to, and I promised her she won’t be late.
Diabetes has shown me just how resilient and amazing Harvey is. It’s being amazed at Harvey’s strength and courage, even when he knows what’s coming. He is my little brave-heart and he makes my heart swell with pride at his maturity and just ‘get on with it’ attitude. In the last few months I have found myself riding on his strength, he has lifted me up when Diabetes has made me want to crumble.
Diabetes is hearing people say ‘he’s lucky he can still do everything’ or’ there are kids in worse positions’, like this is supposed to make us feel better. Diabetes is learning to be patient with these people and understand that they know nothing about the burden Harvey carries, that we all carry.
Diabetes is knowing it could be worse….but also knowing that Harvey was once better.
Diabetes means Harvey has lost the ability to eat freely and without thought…..and to a certain extent, so have his siblings. It is carb counting, and making Harvey eat when he is not hungry, and stopping him from eating certain foods when he wants to.
Diabetes means that Harvey has had to grow up a little more than most 8 year olds. It means that he can’t fully relax at play dates and parties and just be a carefree 8 year old, digging into party food as he wants and when he wants, without being finger pricked and having a needle. It’s Harvey going home from a party when everyone else is staying for a sleep over. It’s the frustration that follows which turns into anger. It’s the fear of having to have a finger prick and/or needle in front of his friends. Or having a hypo or high, when he just wants to play like everyone else. Diabetes has made him feel different.
Diabetes means looking into my sons beautiful big brown eyes and perfectly freckled face, and not being able to fix him. It means staying positive for him when he wants to give up. It means not crumbling when I hear my 8 year old son say he is giving up because the burden is starting to feel too much. It’s not giving up when I want to give up.
It’s hearing him say those words…’why me mum? Why did I have to get it’? (He doesn’t like to say Diabetes as I think saying it will make his disease accepted)
It’s the tears that escape down my cheek because I can’t fix him. It’s looking into my sons big brown eyes and feeling the tears well up because I now see a sadness in his eyes. It’s giving him 4 needles a day. It’s seeing the bruises and needle pricks on his stomach.
Diabetes is the conflict in my head, which at one minute is so thankful that those 4 needles each day (584 to date) are keeping him healthy so that he is not confined to a hospital bed…or worse. But the next minute wanting to cry out in anger and frustration that this has happened to my little boy. It’s with each finger prick, CGM insertion and needle, I have to hurt my beautiful boy, to keep him healthy and alive.
It’s being thankful for technology such as Continuous Glucose Monitors and insulin pumps which makes this disease a little easier to manage, but at the same time, makes my heart sink each time his CGM alarms or I catch a glimpse of the transmitter attached to his tummy. It makes his disease visual and have sound, and makes my little boy look like the bionic man.
Diabetes is seeing his blood glucose graph. The dramatic peaks and troughs, constantly reminding me that no matter how hard I try, I can’t control this disease. All I can do is try to manage it. Each blood high leaves me feeling deflated, and I often wonder, how many highs can his body endure over his life, before his kidneys, eyes, heart and limbs will be impacted. Diabetes is feeling helpless. Diabetes is predictably unpredictable.
It’s the waking in the middle of the night and checking his blood glucose levels on my phone, or giving him a finger prick to make sure he is not having a low. It’s the prayer I say as I lay in bed, pleading that his blood levels will remain stable enough for him to wake up in the morning, and drowsily walk into my bed for cuddles and ‘I love you’.
Diabetes is Harvey’s siblings seeing what he goes through and them feeling that helplessness. But diabetes has also brought them closer together. Despite Harvey needing more attention, it has brought them a deeper understanding about life, patience and empathy. They have had to grow up a little more too this year and be brave for their brother.
Diabetes has brought my husband and I closer together. It has brought our family closer together. I am forever grateful for our wonderful family and friends who just listen, and encourage and support. Diabetes has given me a greater appreciation of the wonderful diabetes educators, nurses, doctors and support groups. Harvey’s amazing teachers at school, who are so caring and accommodating to Harvey’s needs, which allows me to breathe a little easier.
Diabetes is not looking back. Looking back makes me ask ‘Why Harvey? What did he do? Why us? Why not me??? I can’t go there as my anger is overwhelming and I need to stay positive for my little brave-heart. I have to keep looking forward, not back. Diabetes is a restless feeling inside of me, telling me I am not doing enough for Harvey and at finding ways to help find a cure.
Diabetes is living in hope that one day a cure will be found.
Diabetes is seeing that look in Harvey’s eyes. The realisation that this, right now….is forever.
If you or a family member has been recently diagnosed, get in contact with us and we can assist with support and information.