Keeping it (not too) Sweet

It’s been a while since the last post. And it’s been an intense few months for our family.

When people ask us why we made aliyah, all sorts of reasons come up (the weather, one less seder night, some distance between us and a few stressful family members, option to live on a yeshuv…the usual stuff). Over the last 7.5 years I have not regretted our decision, but a few times I wondered – are we missing out on anything?

So far I havent come up with anything other than superficial nonsense ….. shopping opportunities, perhaps a few vegetables (havent seen a parsnip in 8 years), and perhaps a little more snow.

So it came as a huge surprise to me that, as it turns out, we’re also in a great place for healthcare.

Never saw that one coming. Until recently, I could safely say I had never really had a positive experience with doctors here. But now I have. Last August was a challenging month. Pregnancy & heat is a miserable combination. We stayed home a lot. My boys were eagerly awaiting the penultimate week of August, when daddy would be home and we could do some some fun trips. Only a couple of days into our staycation, whilst at a park in Haifa, we noticed 4 year old Raviv had the classic Israeli kid tummy affliction (which I wont share because it will shock your finer sensibilities if you don’t already live here) and since he had seemed to be a little tired for a while, I decided we should pop to the doctor on the way home.

This was a strange decision for me. I generally avoid doctors.

The surgery was deserted. Apparently in August people are too busy enjoying themselves to get ill. The doctor asked me a few questions about his state. When I mentioned he had woken up to pee for a few nights, she started to ask more questions and alarm bells started ringing in my head. They decided to do a blood test and found he had high blood sugar, and glycosuria. (Sugar in urine). A horrible sinking feeling spread through me. They asked if he had eaten anything sweet that afternoon. Since we had only eaten leftover mejeddera and salad with a bit of bread and dip at our picnic, I knew what this meant. Only diabetics (and drunks) get sugar in their pee.

We were sent straight to the emergency room at Rambam, but with 4 tired hungry kids and 1 tired hungry (getting cranky) pregnant woman, this wasnt an option. So we went home, fed everybody, and then Husband took him him off to the hospital. Meanwhile I stayed home, got everyone to bed, and willed the whole thing to be a mistake. My neighbour came over whilst I waited for news.

Within a few hours, Raviv was diagnosed with Type 1 diabetes, and our whole world changed. In Israel, this condition puts him in the “100% Disabled” category until age 6, basically because he needs constant supervision and he can’t administer his own insulin. But of course we didn’t know any of this stuff. We just knew our previously healthy 4 year old now had an autoimmune disease.

Rambam childrens hospital is actually a nice place, as hospitals go. Somebody had clearly put some thought into that building. Raviv was put on a ward with 2 other patients and after a sleepless night I went to see him in the morning. The hospital staff were friendly but we realised early on there is still a lot of conflict with this disease regarding management. Raviv was incredibly brave and compliant, not flinching at the sight of needles and lying still even when one doctor spent a painful few minutes searching for a vein.

The food they gave him was quite appalling under the circumstances, but they assured me it was healthier than the non diabetics! I was quite shocked. Raviv however was thrilled at being given diabetic yoghurts and puddings 3 times a day. And it was fantastic to see him with an appetite for the first time in months.

After two nights of being alone and very pregnant with 3 worried children, I decided that Husband actually had the easier option in the hospital so we swapped. I didnt care about the uncomfortbale hospital bed because I couldnt sleep anyhow what with the worry and a baby who kicked like a karate master. By now my older children were really missing Raviv and Jojo had taken to sleeping in his bed. They made him beautiful cards and pledged to temporarily give up sugar in solidarity until we knew how to control his illness. (They actually kept that up for a month!)

The hospital did have an art room staffed by Chabad girl volunteers who were very sweet. And there were toys and a play area, but the highlight of his stay was when his ganenet turned up to see him, laden with toys, a book, a mini whiteboard and a big balloon.  His whole face lit up. I nearly cried. She had thought of everything.

After 3 days they decided we had learned enough to manage on our own. By now it was Friday and we didn’t fancy spending a Shabbat in the hospital – especially as they generally run on skeleton staff anyhow.  Husband rolled up with the other 3 boys and we trundled home. The boys were incredibly protective over Raviv, and in my emotional pregnant state I found myself tearing up several times.

Bizarrely, another kid in Raviv’s gan (same age and built a house across the road from us) was diagnosed just a few months before. Type 1 diabetes has one of the strangest epidemiologies of all. No one really knows what causes it and it can strike any demographic. It’s generally diagnosed in childhood, but can lay dormant until 20, 30 +. It bears no connection to type 2 diabetes (which is generally preventable and reversible) and is filed under the title of autoimmune diseases. Until fairly recently, it was considered life threatening – and still is if you don’t have access to good medical care. Happily medical science is on our side and has come a long way since the days of long needles and winging how much insulin to take.

We started off by measuring his blood glucose regularly, and giving him injections before meals and snacks. Since then we have learned to moderate his diet, observed what other factors affect his glucose and have been given a pump and sensor. This has made a huge difference to his (and our) life, although it still has to be changed regularly (which does hurt him somewhat) but at least he doesnt have to inject before he eats anything. We are teaching him to be indepedent, to read his own BG, and to understand what foods are good for him and what he can eat without insulin if necessary. The biggest relief is the sensor, which beeps if he goes too high or too low. Previously, we lay awake at night (well I was already awake feeding a newborn, but Husband was awake worrying about the glucose…) and i’m hugely grateful we live in this country (wars and all). We have a lovely doctor although it’s a huge shlepp to get there for his clinic and the government does give some benefits (the pump is paid for by clalit but still ….. costs mount up especially if you choose to moderate the diet).

It’s a huge responsibility for us at this stage of his life and I am constantly trying to do what’s best for him without making it define who he is. Very challenging. Unlike allergies or cealiac there are no really good “dessert” options for a diabetic, unless you enter the world of fake sugar (which I am currently avoiding) and every sugar and carbohydrate has to be carefully accounted for. It’s all about balance. Weighing up his needs, everyone elses needs and making tradeoffs (potatoes with dinner or do we have dessert folks….?) Luckily for him he was a healthy eater before all this. But even healthy eaters can run into difficulties….. brown rice, sweet potatoes, polenta….. are only marginally better for him than trash. A concept I find it difficult to get my head around. A trashy choc bar or ice lolly can be easier to deal with than my homemade junkfree granola bars, since the trashy option has carb numbers on the packet.

With all this…. Raviv is managing brilliantly. Yes he has hard days and he’s not quite the carefree little boy he was, but he’s an unfailing optimist, a strong character and fantastically willing to try all the healthy snack alternatives I have thrown at him (some of which have been unquestionably dodgy). He has developed a love for coconut shavings and can artfully arrange a plate of salmon tartare (instant healthy diabetic food).

I have met children his age who live off pasta, white bread and junk. “Oh, that’s all she will eat” their parents say, as if they have no choice in the matter. All I can say is, their parents are very lucky people. And I hope their kids don’t get type 2.

After diagnosis and the start of his treatment his energy levels were instantly improved and he has gained some weight (he was getting very thin which was one of the things which led me to the doctor). He attends a sports chug once a week where he generally runs around enthusiastically for 45 minutes and is a very agile and sporty little boy.

Our family has made some changes on his behalf. Our brief stint as mostly-vegans has gone out of the window. Veganism and diabetes is a terrible combination (yes even if you eat chia and kale and avocados and all that stuff) so I shifted our diet once again (sorry animals, but I dont have the kindliness of Mrs Noah who incidentally must have been a real whizz with kitniyot). We were never big challa eaters to begin with (I think its a shame to fill kids up with crappy white flour when you have a nice meal planned) but now I have reduced it even more and we pretty much avoid shul – there are 2 men handing out sweets without limits not to mention kids guzzling snacks everywhere and its just too stressful.  We have family time involving games, cars and mountains of Lego and eat diabetic carrot cake for kiddush. Far more relaxing all round.

Nowadays type 1 diabetics can live normal lives and even compete in intense sports. But for a little kid the sugar swings can be huge – even when you are on top of them – and the one thing they really cant do is predict when they will be hungry – so I often find myself having to distract him whilst the insulin kicks in. He has a private carer at gan who monitors his glucose and administers insulin and until fairly recently we were in constant communication whilst we both learned the ropes. This effectively means I am caring for 3 highly dependent kids – as I also have a newborn and 2 year old (I now think of my 7 and 9 year old as independent) even when he is not home.

Its been very busy.

Due to the fact we only learned of his condition 2 months before I had baby number 5 the moatza (council) deemed me worthy of receiving a few hours help each week from when the baby turned up. Imagine cooking lunch whilst measuring blood glucose and injecting a 4 year old, and supervising a 1 year old on the potty all whilst breastfeeding at the same time and you will see what I mean….. (I actually managed this 2 days a week thanks to my wonderful 7 and 9 year old).  Husband found a friend to fill the position twice a week and I found a friend to come on another day through the organisation em la’em. Both ladies were excellent adopted grandmothers and were very kind to me and the kids.

After years of actively raising money for israeli charities, it’s very strange being on the other side.

But as I explained to my kids….. what goes around, comes around.