Until 3 weeks ago, life had been plodding along fairly nicely. Like everyone, there were a few niggles that had to be endured or overcome but nothing too major or that warranted a vast amount of brain-airtime. I’d been thinking about what I’d do when my youngest starts nursery in Sept 2017 and was well on my way to a 5 year plan (which no Mother, does not include anymore children). Then BANG! Everything changed in 5 seconds.
Two weeks before we’d been on holiday. I use the term “holiday” loosely. We renamed it prison camp. We’d been to a family holiday park in Wales and had the joy of staying in an “apartment” (think council flat) above a family of chain-smokers. The weather was glorious but the windows had to be shut to stop us passively inhaling more smoke than Popeye did in his fictional lifetime. Our view on every side was sadly not Costa del Wales but of more “apartments” and the only possible reason we can think of for the almighty noise of barking dogs must have been a residential trip for Battersea Dogs Home. I had an ear infection and sinusitis and the toddler was miserable, for the entire time.
Shortly after, as a monumental treat and therapy for the hideous Wales trip, husband and I had decided I would bob off on a trip to Spain, without him, or the kids for 3 (ENTIRE) days to spend some time with some very lovely friends of ours. Last minute holiday prep ensued and another dear friend offered to look after the still grumpy toddler so I could go and try on unflattering beach attire in peace. It was Friday afternoon and this was my only time to go to the shops before leaving on the Monday morning. Predictably it was a disaster so I did what all sensible women do and bought a pair of ‘suck it all in’ jeans (ideal for 35° heat) and went to Starbucks to drown my sorrows in an overpriced latte.
That evening my husband delivered on a promise he made to our eldest daughter. All year she’d been waiting for a weekend evening warm enough for them to sleep in the shed for the night (shlamping: shed-glamping. You should try it!). After far longer than it should have taken, a puncture free airbed was finally found, sleeping bags de-mothed, toilet trips taken, a bag of snacks prepared and off they tottered down the garden path.
After a couple of hours indulging in back-to-back property programmes I lay my head on the pillow. The words of my friend earlier in the day came back to me. “She’s been really thirsty and I’ve had to change her twice in two hours”. Hmm. I have Type 1 diabetes. Although it can be passed down, the chances aren’t huge by any stretch so I’d never given it much thought. But thirst is a sign so I hopped out of bed to take a precautionary blood test. I’d done this before on my older daughter who has had a number of health issues over the years. It had always been fine so I just thought it’d be the same. The result should have been between 4-7mmol. I pricked her finger while she was sleeping and waited the 5 long seconds for the result.
24.9mmol. “Oh s**t!”
With a blood sugar that high and having the condition myself I knew immediately that she had Type 1 diabetes. I ran to the garden to wake up Dave who was asleep, in the shed, wearing headphones. (Of all the nights!!) Although Nia’s blood sugar was through the roof, we woke her up and she was OK. Persistent high sugars can lead to a potentially life threatening illness called ketoacidosis. Many children who are diagnosed with diabetes end up on high dependency or intensive care but because I’d recognised the symptoms early she wasn’t seriously poorly. To be honest, she was the most healthy looking child in A&E that night and there were puzzled expressions from other parents as to why she was receiving so much medical attention.
She was taken straight to the ward which was a hive of activity with kids crying, machines beeping and lots of people coming to see us, poking, prodding and asking questions. They needed a urine sample from Nia but she wasn’t cooperating. They then needed to fit a cannula in her hand and we decided the shock might make her wet herself. So she’s sat on my knee with a little tray under her bottom to catch the wee. I had to restrain her while she had the needle in and blood taken. She obviously hated every second, blood went all over me, she wriggled and started to wee so that went all over me too. Brilliant. The only saving grace was that it was so traumatic she fell asleep.
In the chaos I’d remembered to pack everything that Nia might need for a month but had packed NOTHING for myself.So there I am, Nia soundly asleep, me covered in blood and wee with no pyjamas, no change of clothes, no wash bag, toothbrush, nothing. A student nurse took pity on me and gave me a theatre gown to wear as pyjamas. Just one. Just one very revealing, backless, itchy theatre gown. Let’s just say the nurses doing hourly checks on Nia would have got more than they bargained for. I brushed my teeth with Nia’s toothbrush and put my head on the pillow. I sobbed.
*The next 4 paragraphs are diabetes focused but it helps to paint a picture so please do read them.
Diabetes is a strange condition.From the outside, diabetics appear completely normal. The only clue I give of my diabetes is my insulin pump. A small mobile phone sized device that clips onto my clothes which is basically a mini drip which delivers insulin 24/7. But what’s going on within is a different story. In Type 1 diabetes your body mistakes the cells in your pancreas (the organ which produces insulin) as harmful and attacks them. In turn insulin production stops. Insulin makes sure that any sugar in your body is used for good. If there is no or too little insulin to deal with the sugar it can have serious short and long term damage on the body. If you have too much insulin then you won’t have enough sugar, or energy. Extremes of both can be very serious. So it’s like walking on a tightrope, all the time. But there are dozens of variants that can affect the balance.
As a diabetic, every time you eat you have to calculate the carbohydrates to deliver the correct amount of insulin. Exercise, sickness, stress, sleeping patterns, the type of food you eat, the time you eat and more can all change the level of insulin needed. In a non-diabetic person the pancreas is like any other major organ. It works around the clock to ensure you stay healthy. It doesn’t matter what you do, it is on, 24/7. It’s like a tracking device which keeps you walking on the tightrope no matter what you do. Even if you run a marathon or eat and entire tub of Ben and Jerry’s the pancreas keeps you on track. In the diabetic body, there is no tracking device. The default is that you fall off. With routine, regular eating and good habits you can learn how to best stay on the tightrope but you have to focus on it. Take your eyes off the game and you fall off.
When I was young diabetes was treated very differently. The science was less precise. Diabetics were given a much wider tightrope to walk on and blood sugars were accepted to be far wider ranging. The problem with this is that it causes long term damage. Sight loss, nerve damage, amputations, heart failure and more. So rightly so, the aim now is to keep diabetics on a very similar tightrope to a non-diabetic.But without a pancreas doing the thinking, calculating and hard work, we have to.
Advances in technology are incredible. I have a pump which helps me to work out precise insulin requirements which vary depending on the time of day. But it doesn’t know what I’m eating or doing. I have to tell it. I have to tell it when I eat, or drink, or am ill, or am doing exercise, or am having a bath. If I go on holiday, it stays with me. When I sleep, when I’m on a date with my husband, when we go to the zoo. You cannot switch off the diabetic part of your brain. Ever. In return I will hopefully live a full, healthy life. Nia will hopefully live a full, healthy life, have children, be whatever she wants to be and go wherever she wants to go. But currently she will have to keep her diabetes brain switched on and her medical equipment with her for the rest of her life. While she is so young there are so many more variants that can affect the balance and the speed at which it can all go wrong is frighteningly fast. So she has blood tests every 2 hours, round the clock. We have to be her pancreas, day and night. It gives her normality now and the best chance for the future, but it’s hard.
So back to that night in hospital. There I am, unwittingly flashing the nurses on a pull out parent bed and sobbing silent tears into the pillow. I know this beast only too well and now I am watching it attack my precious, tiny, 22 month old, beautiful daughter. I feel overwhelming guilt because although I know this is not my fault, I feel responsible. I have passed on this toxic baton that I never wanted my kids to have to hold. But in a strange way I’m grateful that it’s not worse. I know she can live a relatively normal life. I have watched as dear friends have had far worse hands dealt. Terminal news, news which drastically alters every aspect of life. At 18 I sat by the hospital bedside of my best friend who had battled cystic fibrosis her whole life. The next morning the phone rang with the worst possible news. Diabetes isn’t the worst news you can get, but it’s life altering and big and horrible. And it’s constant. There’s no respite, no holiday, no remission. It’s there, all the time. It’s misunderstood. It’s under-sympathised and It’s not fair.
While in hospital a friend sent a message that hit the nail on the head. It read “I am sure you are climbing a huge b*****d of a mountain….” and I thought YES! We are at the bottom of a giant mountain. And we’re not the only ones. From my friends who are grieving the loss their beautiful children, to the family learning how to live life to the full with their precious severely disabled son, the friend who can’t conceive, the friend who desperately wants to get married, the friend engulfed by debt, the friend who lost their job, the friend who lost their parents, the friend who might get deported. It’s not just my friends. You only have to turn on the news to see millions around the world, suffering pain and terror far worse than we can imagine. There are so many mountains.
But why? Why us? Why this mountain. Why you? Why your mountain? Why that tragedy that happened or that difficulty you’re going through? In all honesty I don’t fully know.
I believe there is a vast spiritual world that we cannot begin to fathom. Like an iceberg we can see the tiny tip of it but under the water it is vast, huge, unimaginable and often misunderstood. Many people try to get a deeper understanding of what’s under the water by seeking help from clairvoyants or spiritualists or other religions. But I believe that God made the huge spiritual world so I’d rather go straight to him to get an understanding of it.
What I need to make clear at this point is that God does not instigate pain, suffering and death. He completely and utterly did not cause this. He sent Jesus to take all the punishment so that we could live in freedom. But I believe there is a very evil force at power in the world that as the bible says seeks to “steal, kill and destroy”. That power thrives on sadness and hate and terror. NONE of that is from God. But what God can do is to transform it for good.I know him personally and he is good, so good, so kind, always faithful and always loving. But for reasons, often unknown to me and even though he did not cause it, God won’t necessarily intervene at first request when hardship comes.
I think there is huge significance in the way we chose to live and behave and respond to the mountains above. I believe that to respond by seeking God, trusting in him and following him will impact what lies beneath so drastically that we will only know the power of it when we get to heaven. I look at the bible and see story after story of the way that people faithfully (as in they have no idea what’s happening or what good can come of it) trust God through horrendous hardship. Sometimes for decades or generations. But each time there is ultimate victory for those that love him.
So I am fully trusting that although this mountain feels huge and although it will be tougher at times and easier at others, that although other hardship will inevitably come, if we have to climb any mountain, it will not be in vain. It will not just be one of those things. It will not be because “s**t happens, then you die”. No way. Not on my watch. If we’re climbing this mountain then it will be for a purpose. We gave Nia her name because it means ‘brightness, radiance and purpose’. Never has there been a more fitting name meaning for a child. She carries a glow with her. She is a little ray of sunshine. Her middle name is Hope and she carries that too. Her life is one of purpose and diabetes will have a purpose in her eternal story. Even if we never find out what that is in this life, we have an eternal hope that God will use this for our good and his glory.
And come what may I will (try at all times to) continue to say “God is good all the time and it is well with my soul”. Eternity is in his hand and in our weakness, he is strong.
Mountains can be harsh, lonely, dark, bleak and frightening places. I know there will be times when it is foggy and I won’t be able to see the view. When I have to put on my crampons and cling on for dear life. Climbing mountains requires supplies and encouragement. Cheer people on who you know are climbing at the moment. Send food parcels, costa vouchers, cards, flowers. Our friends have paid for a cleaner for a couple of months. WOW. One less bag for me to carry while the path is really steep…THANK YOU!
As I set out on this long journey I have decided to try my very best at the following:
- Mountain climbing comes with great views. I will remember to pause and be grateful that I can see beyond the superficial and the every day. That I can see God from a different perspective. He is everywhere but I feel closer to him up here.
- That (as it says in Psalm 37:23) The Lord makes firm my steps when I delight in him. I might stumble but I won’t fall because he holds me. I will praise and worship. In my car we will blast out gospel music and sing like I am a nun in Sister Act. I’ll let him be the ultimate guide up the mountain.
- That I will not compare my mountain. I’ll shout over encouragement and send supplies to other mountaineers. When disaster strikes I will drop and run to help carry someone.
- That I will always look up. To know that I will be lead down the mountain (healing) or be lifted off it and promoted to glory (death). And because they are my only options then I will tread fearlessly.
- That I will be grateful for people I meet because I am on the mountain. I will encourage them and cheer them on, just as they will me when I am feeling weak.
- That when I am no longer needed as a sherpa on Nia’s mountain, I will be useful on someone else’s.
I am sorry if you are on a mountain. I pray you will see incredible views, that you will be encouraged and supported and put your trust in Jesus, who even on the tricky paths will guide your every step.