I have recently launched in to a new way of doing things on my blog. I decided that from here onwards, I’m going to keep it real. Somehow, The Universe (or God, or The Almighty Power of The Internet) knew what I was up to, and a shoot which I had thought would take place in several weeks time was moved forward to this week.
The timing is impeccable.
Sunday14th to Saturday 20th June is DIABETES WEEK, and this photo shoot involves myself (a type 1 diabetic) capturing 2 energetic, beautiful and captivating little girls, both with type 1 diabetes.
below: The sisters and I compare insulin pumps. Further down, big sister has learned to check her own blood sugars and is just beginning to learn the skills needed to manage her own pump. It's a complicated task involving being able to estimate the weight of carbs in every meal, and then being able to translate that in to the amount of insulin required, taking in to account activity level, viruses, hormones, emotions, stress and other factors.
Rather than sharing with you my more usual portraits of the family, I’ve decided to give you a little ‘behind the scenes’ window in to the every day reality of the balancing act that this family faces. With all of the highs and the lows, the ‘swings and the roundabouts’, the daily ‘juggling act’ - whatever you want to call it - the mother of these girls deserves a medal. In fact, scratch that. She, and countless other parents like her deserve much more than a medal - they deserve to not have to deal with this monster. I want to be able to take their children’s diabetes away. If I were to personify diabetes, he would look like a slimy, angry little gremlin, hell-bent on taking our best laid plans and just messing with them, one by one. I want to stamp on it, scream at it, beat it in to the shape of a cricket ball and then launch it in to space with a bat.
Sounds a bit overwhelming, doesn’t it?
below: India (9 months) is having her blood glucose levels tested. The steep curve shown on her device indicates that her continuous glucose monitor has picked up a rapid drop. Her mother treats it with juice, but she just keeps dropping. 3 rounds of sugar later along with some fresh air to calm her down, and finally baby's levels are back within normal range.
India wears a Kaija sofia baby pump belt
All is not lost. We may not be able to stamp out the diabetes gremlin just yet, but the diabetic community are WINNING in many ways. Daily, I see so so many examples of diabetics (and parents of diabetics) who are giving the diabetes gremlin the finger, refusing to let him dictate what they can and can’t do. I see countless inspirational people living life to the full, in spite of the challenges that this disease brings. We can keep the monster subdued and tamed. We have incredible, invaluable support groups online. These two girls have a mother who is an absolute gem in the diabetes community. Parents support each other, people come together to share knowledge and offer peer support. We can take advantage of the services offered by our wonderful NHS (God, Save the NHS!) - my team have been a lifeline for me on many occasions. We can raise awareness, share our stories and help the general public to have a better understanding so that these beautiful kids grow up in a world where they are understood and accepted.
Below: This time, big sister Mackenzie's levels are dropping. Her best friend offers support while looking after her device to watch for her levels coming back up as she eats a packet of crisps. Support from friends and family is invaluable when managing type 1 diabetes. Further down: Baby rattles a little pot of glucose testing strips.
Some of the images I am sharing may be hard to look at (baby having the heel-prick test had me in tears), but this is just the daily actuality for families like the Emmersons. They have to keep blood sugars in a tight range; 'too high' leads to serious long term complications, and 'too low' can pose quite immediate risks. During this photoshoot we've seen mostly lows (even the photographer had to reach for the ribena!) but on another day the pictures could tell an entirely different story. Life for these guys is, in many ways, just like anyone’s life with 2 small kids. It can be busy and noisy, it can be wild and fun, or chaotic and non-stop. These two incredible little beings radiate so much love, warmth, energy, excitement, joy and an infectious passion for life. There is a big big difference though, as anyone managing a chronic condition will know. It’s all of those things I listed above PLUS having a part of your brain focused on managing sugar levels literally 24/7 - You can never switch off. You know those tantrums that your 4 year old has when he refuses to eat anything you put before him? Imagine that, but with the added risk that he will become dangerously unwell if he doesn’t finish his beans. That is just one example, I could give 500, but you get the idea.
Below: All sorts of things can contribute to low blood sugar in type 1 diabetes. Today was particularly warm, and that combined with using lots of energy running around the garden could have been what triggered the drop. Mackenzie's sensor (which can be seen on her arm) picked up the decrease. Sometimes, there is no rhyme or reason for the fluctuations - diabetes doesn't always play by the rules. Further down, Mackenzie's mum tests her levels and then treats the low with a sweet drink.
I’ll finish with a couple of the images from the main shoot.
These are happy, delightful children. They are faced with challenges but surrounded by love, total dedication and support.
Their Mum Anita finds it hard to think about the possibility of a cure. I’ve been there myself - hope can be painful when it is met with disappointment. When I was going through a phase of difficult illness, I remember telling my husband that I didn’t have the energy to hope because I was so scared of being let down. I asked him if he would hope on my behalf while I just focussed on surviving each day, until things became a little lighter again. Let’s hope for this family, and others like them. Let’s support JDRF who are involved in many avenues of research for a cure for type 1, and diabetes uk, who support and campaign people with all types of diabetes.
Dare to dream with me about the day when the only highs and lows these girls will have to think about will be on the swings!
Stay strong people,
And keep it real,