Living with a Diabetic Husband and Daughter

Posted on January 3, 2012

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Meet Kerry. An amazing woman who lives in Singapore with her 5 year old diabetic daughter and her diabetic husband. We met via the diabetic online community, and I wanted to share her experiences and insights. Teaching us that diabetes is a part of life for some. But it is no reason to stop living. Enjoy!

1.
MICHELE: Give us a bit of background information about yourself and your family? Your daughter and husband are both Type 1 diabetics? How long have they been T1s? Are you from Singapore? If not, where are you from and how did you end up in Singapore?

KERRY: We are British, and have been in Singapore for nearly 6 years now. Before that we were in India for a couple of years. We emigrated to India for Bob’s job, and from there to Singapore when the India assignment was finished. My husband, Bob, and our 5 year old daughter, Isabel, both have T1 and our 6 year old son, Joshua, doesn’t have it. I’m 39 years old, a keen runner and wannabe triathlete, and I work pretty much full time (from home) as a freelance translator. Bob is in sales, in the financial industry. Ummmm, what else? Joshua was born in India, Isabel in Singapore. No plans to go back to the UK at the moment – we love living abroad!

2.
MICHELE: Tell us about how diabetes became part of your family’s life. Please provide a bit of background info: your husband’s diagnosis with Type 1 diabetes; your daughter’s diagnosis; family history of diabetes. Your reactions/responses to diabetes entering your lives.

KERRY: Bob was diagnosed in October 2001, aged 31. That was a very frightening experience as we knew nothing about diabetes. It turns out there is a family history on his side, but way back. What happened was…. He had a bad case of flu and just got sicker and sicker instead of better. He was craving cold chocolate milk and water, but lost a lot of weight very quickly. When he threw up one evening after eating a few spoonfuls of soup and literally couldn’t get out of bed, I took him to the hospital the next day, on the advice of my Mum. She was a nurse before retiring, and said that it sounded to her like diabetes. I told her not to be so silly….you get that when you’re 4 or something, don’t you? Not necessarily, she said. She asked me if he smelled of pear drops and I said no, but he does smell funny. “Is it nail varnish remover”, she said…. “YES”! “That’s it”, I said. “Well, there you go”, she said. “Get to the hospital”.

So off we went to the hospital, the next morning. Their first thought was that it was early-onset Type 2, but on doing an HBA1C test they confirmed Type 1. Bob’s first reaction was relief that it wasn’t something worse, and then he asked if he could still have his stag night (we were engaged at the time, due to get married the following March!). He has always held to the belief that it could be worse, and just knuckled down and got on with it. I was also relieved – I thought I was going to lose him, 4 months before our wedding. We’d been together more than 10 years and I had never seen him so sick.

And he DID have his stag night, and hasn’t really changed his life all that much. He has never let diabetes stop him from do anything. He was on shots at first (Novorapid for meals and Lantus for his basal) and got his pump in November 2009, at the same time as Isabel, our daugher.

Isabel was diagnosed with diabetes at age 2, in February 2009. We caught it very early, with her, so she wasn’t anywhere near DKA. She had bronchitis the previous weekend and was on antibiotics….had got better but then started craving water and crying a lot. I let it go for a couple of days. But after she drank 3 big bottles of water in the space of an hour, I tested her blood glucose with Bob’s meter and got a 33 (that’s over 500 in US numbers, I think). So we went straight to the doctor and were referred to the local children’s hospital.

3.
MICHELE: The crying and drinking lots were symptoms of diabetes. Did Isabel display any other symptoms? Did you suspect diabetes?

KERRY: Lethargy, craving drinks, weeing a lot, crying a lot, bad temper (most unlike her!)

4.
MICHELE: When you first heard that your daughter had diabetes, what was your first reaction? Response?

KERRY: I was upset – we knew there was a risk, of course, with Bob having it, but you always hope it won’t happen, don’t you?! But after I got my head round it, it was OK. There was a kid in the next door room, in hospital, who was hooked up to tubes, bald head, obviously on steroids….I kept thinking, well, it could be worse. Then I found out that one of Bob’s colleague’s had a 2 year old who’d just been diagnosed with muscular dystrophy. That family will lose their child – we won’t, necessarily. As I said, it could be worse.

6.
MICHELE: Do you think it was easier or more difficult learning your child had diabetes since your husband, also, has diabetes?

KERRY: It was definitely easier. Diabetes was already a part of my life, and I’d come to terms with that. It’s different when it’s your child than when it’s your husband, obviously (more responsibility, etc.) but definitely easier than when it happens to your child out of nowhere, like many Mums I know via the diabetes online community (DOC).

7.
MICHELE: As a mother of a newly diagnosed child, what feelings and emotions did you experience? How did you deal with them?

KERRY: Initially, relief that it wasn’t something worse. Then, when my Mum left to go back to the UK (she had been staying with us on holiday at the time, thankfully!) I panicked a bit about how I was going to cope, and what would happen if I got something terribly wrong, like gave her too much insulin, or something! But then that subsided pretty quickly, because you just have to get on with it, don’t you. I think if I let the fear and worry get to me, I am more likely to make a mistake. I deal with my fears and emotions about diabetes (the same as with anything that is stressful in my life) by looking for the silver lining, staying positive, listening to good music, and going for long runs!

Diabetes is here to stay, for the moment, and we have to live with it. But it is here on OUR terms, and we are in control. Isabel is just a kid, like all her friends and classmates. She can (and does) do everything they do, and eats what they eat. She knows she has to test first, and have insulin, and do her site changes, and she deals with it all with confidence and bravery, for the most part. Well, we always get the odd bad site change or tears when she has to test and she wants to run off and play, but it never lasts. I never, ever, EVER say I hate diabetes. That would be like saying I hate Isabel or Bob, to me. It’s my job (and Bob’s) to help her grow up and learn how to manage her condition confidently, graciously and maturely at the same time as functioning in a society that doesn’t always ‘get it’.

8.
MICHELE: Initially, what was your biggest fear?

KERRY: As I said above, that I would get it wrong – give her too much insulin, or too little, or something like that.

9.
MICHELE: Did you get the support and resources you needed in the beginning? What tips, advice, etc were most useful?

KERRY: Not when Bob was diagnosed, really. We had one meeting with the consultant, were given insulin pens and a meter, a repeat prescription for insulin and sent home to get on with it. We learned it all ourselves. That was in London. Bob then saw a good consultant in India and got good care there. Here in Singapore, we have an excellent endo and get a lot of support from him. But for the most part I manage Isabel’s diabetes and Bob manages his own, pretty well. We don’t see the team of diabetes nurses and dieticians – there is one, but we don’t really need it. There are another two or three kids here (expats, I mean) with T1 and I have coffee with their Mums, occasionally. Everyone is very busy though and generally we don’t manage to find time for all of us to meet up! There is no JDRF chapter here, only a very small local support group which is mostly for adults with diabetes, so we don’t get much out of them. Bob doesn’t want to join a support group – he’d rather just get on with it! Actually it’s not such a bad thing – it means that diabetes isn’t a constant part of our lives, only a very small part. Which, for me, is how it should be.

10.
MICHELE: Based on your knowledge, is the healthcare and treatment for diabetes different in Singapore vs. other countries? If so, how?

KERRY: There is better care here, but it’s expensive. The care Bob got in London was patchy, to say the least. I know of many Mums in the UK who struggle to get proper care in school for their kids, or who have consultant endos who really don’t seem to give a *** about the family’s needs or the kid’s emotional needs, and prescribe insulin and throw numbers about….etc. Our endo is great – he is very laid-back, very clever and very open to my input. He ‘gets it’ that I am in tune with Isabel and discusses her emotional needs with me as well as her basal tweaks, etc. I don’t know much about the care in the US but it seems to me it depends on your insurance company. Which is wrong. We are very lucky to be here, I think – it’s all out of pocket, no insurance, but we are able to choose our endo, get Isabel on a pump (and Bob) without going through lengthy funding and application processes, use as many test strips as we feel necessary, etc.

11.
MICHELE: Describe your first day/night home from the hospital (assuming your daughter was hospitalized during her diagnosis and initial regulation of diabetes)?

KERRY: It was OK, really. We were advised to check her once in the night – she was on very low doses at first until they got the measure of her and whether she would have a honeymoon (she didn’t). I don’t really remember it, to be honest, so it can’t have been that bad!

12.
MICHELE: Describe what having a diabetic daughter was like in the beginning?

KERRY: Same as having a non-diabetic daughter, just with extra shots. Same tantrums, same food fads, same love of drawing, same tendency to jump in the swimming pool fully-clothed…..nothing much changed apart from having to test her BG and give her shots!

13.
MICHELE: And what about now?

KERRY: Same but with an added pump  She’s a lot better since going on the pump. Yes, obviously I do worry about her in a different way to how I worry about Joshua, and to how other Mums worry about their 5 year old daughters, and sometimes the future looms large and I wonder what will happen. But….doesn’t every Mum do that? I don’t let fear be a part of my life. I don’t focus on what might happen. I don’t read negative blogs, any more – too much negativity in so many D-Mum blogs online. I focus on my daughter’s happiness, her energy, her strength and her bravery, and the fact that she is my little ray of sunshine who simply cannot stop talking or moving, not for one second!

14.
MICHELE: What have you learned since your Isabel’s diagnosis (highlight what is the most important to you)?

KERRY: The biggest thing I have learned is how to be positive. I used to be a real worrier, actually. Now, I have learned how to focus on what is good…how to be thankful…how to look for the silver lining and the shining stars that can light up a bad, dark place. I won’t let myself wallow in dark places, like I used to (I went through a very bad patch when my Dad died in 1999 and I won’t go there again). I have learned that love, and positive energy, can get us through anything. And this is what I’m trying to teach Isabel, and Joshua, of course. Also, I have learned to be more tolerant of the effect it has on others, since I found the DOC last summer. Not everyone has the same experience of T1 diabetes in their kids, and not everyone copes in the same way. My coping mechanism is my way – but that doesn’t work for others. I have had to learn to bite my tongue and back off, sometimes! And to offer support, unconditionally and wholeheartedly, without preaching. Not always easy!

15.
MICHELE: Share the effect diabetes has had on your family (brief description of your family and effect)?

KERRY: The biggest thing is that it has taught us all how to be positive in the face of adversity, and it has brought us together. After Bob was diagnosed we did a lot of talking about it, and it made us a stronger couple. When we got married, a few months later, the words “in sickness and in health” really meant a lot, more than they would have done, otherwise. Then, when Isabel was diagnosed, I changed a LOT and learned a LOT, and I believe that has made us a much stronger family unit. Joshua has also learned how to take care of Isabel, and he has to live with the possibility that one day he might get diabetes, so it’s a big part of his life, too. It’s changed us all, but I believe it has changed us for the better. Also, it’s taught us about healthy eating, activity, a healthy lifestyle as a family – Bob and I learned a lot about that when he was diagnosed (although I was already running a lot and reading about sports nutrition, and eating healthily, so we were halfway there….) and we are teaching the kids about a healthy lifestyle and nutrition, and what you put in your body and the effect it has on you.

16.
MICHELE: What has diabetes taught you about your daughter? About your husband? About yourself?

KERRY: Well, I think I’ve probably covered all that, above. It’s made me stronger, more tolerant, more compassionate and more positive. It’s taught me that Isabel has inner strength, bravery and positivity that you wouldn’t think possible, in a toddler. It’s taught me how to deal with Joshua’s fears and concerns as an older sibling who 1) has to live with the threat of diabetes hanging over him and 2) has to stand back and watch Isabel getting a lot of attention, sometimes! I don’t know really what it hastaught me about Bob – he deals with it (and always has done) very pragmatically, and that is exactly what I would have expected of him. I am incredibly, unbelievably proud of him, and of Isabel, and of Joshua.

17.
MICHELE:
How can mom’s of newly diagnosed diabetics help their children? Themselves?

KERRY: I think the biggest things I would say to a Mum of a newly diagnosed child are 1) Remember you are not alone! There is support out there, and it does get easier to cope, as you go along; 2) Time heals – the shock and grief WILL wear off, with time; 3) Don’t read blogs! Or, be very selective about which ones you read. Many out there are very negative and graphic about the possibilities of death or serious complications, or the pressures and worries about dealing with diabetes in the family – not good, when you’re dealing with it as a newbie. Pick out the positive ones and be selective about who you ‘friend’ on FB – again, there are a lot of negative influences out there, which can really scare you and bring you down. Believe me – I’ve been there, and had to ‘delete’ a lot of people! 4) Be very pragmatic about it, in front of the children. It’s part of life, now – you have to get on with it. Recognise and acknowledge their own emotions about it, but then help them and encourage them to look on the bright side and move on, without belittling their fears or concerns, of course. 5) Let them just be a kid. Don’t let diabetes rule their life. They must learn to respect the condition, of course, but it needn’t take over.

18.
MICHELE: Prior to having a diabetic husband and child, what was your perception of diabetes? How has it changed?

KERRY: That’s an easy one – I had no perception of diabetes! My grandfather had T2 but I had no idea really what that meant – we weren’t close.

19.
MICHELE: Tell us the hardest part of having a child with diabetes. How do you handle that?

KERRY: The hardest part has got to be the lack of sleep! I guess I just handle that by sleeping when I can, and celebrate the nights when I do get to sleep through. We don’t do night checks as a matter of course, only when patterns are changing or if she is sick, or if she’s had a high evening and I’ve had to correct a lot.

20.
MICHELE: What has been the biggest surprise about diabetes?

KERRY: I hope this doesn’t come across the wrong way, but the biggest surprise has been the extent to which it really takes over some people’s lives. We have never let it, and initially when I found the DOC I was amazed at some of the stuff people are posting. Really shocked. It did bring me down for a while, last year. Now, I am more tolerant and a bit tougher – I don’t let it get to me.

21.
MICHELE: The biggest challenge of having a daughter with diabetes?

KERRY: Faddy food issues, currently. We did start off with doing all boluses before the meal but we got into such huge fights and ended up spoon-feeding her and eventually Bob put his foot down and told her that diabetes was not going to be an excuse for bad behaviour!!! So now we are dealing with that in the same way as we dealt with it when Joshua went through it – now we bolus after the meal and then if she kicks up and doesn’t eat, she goes hungry. No drama, no negotiation. She gets an hour to eat, she has to show good manners and if she doesn’t eat, she doesn’t eat. Our endo has been super-supportive on that front and we have had lengthy discussions about eating disorders in the future, so we are trying to make it as small an issue as possible. In the future, I can see puberty being a problem – especially as our Isabel is a little drama queen already and is 5 going on 15!!! We’ll cross that bridge when we come to it and maybe there will be a cure, by then 

22.
MICHELE: Do you ever wonder why? Why my child? Why my husband? Why us?

KERRY: No. Everyone has their challenges in their life. We are lucky that we don’t have anything worse to cope with.

23.
MICHELE: Have you ever blamed yourself for your daughter’s diabetes? Blamed your husband? Why or why not?

KERRY: No, never. Why should we blame ourselves? There’s nothing we could have done to prevent it, in him or in her. Other than not had kids, and that was never an option.

24.
MICHELE: Do you worry about how other children will treat Isabel now that she has diabetes? How do you address this? What do you tell other children/friends?

KERRY: Right now it’s not an issue. Her friends at pre-school were fascinated, and learned a lot about diabetes themselves. They accepted it and just treated her as one of them, from the word go. Some of them have gone up to ‘big’ school with her, so that level of acceptance is still there. At 5 they are just really interested, and we don’t make a big drama out of itor single her out in any way, so it hasn’t become an issue. I am aware that it might, as she gets older, but part of our job as parents is to teach her how to take that on board, and deal with it confidently and with grace. Anyway, kids will always find something to single other kids out, won’t they. I was bullied mercilessly at school for having thick glasses and being the first girl in my year to get a bra. I hated it, but I got through it with love and support from my Mum. Isabel will do the same, as long as we love and support her throughout.

25.
MICHELE: Readers will want to know the good that has come out of your daughter’s diagnosis. Your husband’s diabetes?

KERRY: As I said in other answers, it has taught us a lot about being positive, being thankful, being compassionate….and it has given me strength that I really never knew I had. I think Isabel will be a stronger, more compassionate young woman for it, and Joshua will be a more understanding and compassionate young man. As a family we are stronger and more loving (although I do shout at the kids too much, still – I have a way to go on that front!!!)And it has taught us about living a healthy life, eating properly, keeping fit, etc.

26.
MICHELE: What is positive about diabetes?

KERRY: That’s a difficult question. I wouldn’t say there is anything positive about diabetes ITSELF. But there are many positive things about LIVING WITH diabetes. It teaches you to be strong, organized, positive, and to keep on going when you feel like you want to give up. Because you can’t – you have to keep going. And on a practical level, it teaches you about healthy eating, exercise and the benefits of a healthy lifestyle, which we all need, not just those with T1 diabetes.

27.
MICHELE: What do you want for daughter? Your husband? Yourself? Your family?

KERRY: The same as any Mum wants for her kids – I want them to be happy, healthy and loved. I want them to do what makes them happy and I will support them wholeheartedly in whatever they choose to do. I want my husband to be happy, too, and to stay healthy as long as possible. I want my family to stay close, emotionally, and to keep supporting each other with love. I want the kids to grow up into strong, well-rounded, balanced, happy, positive, loving adults. I know….”I want, doesn’t get” – so here’s the magic word….PLEASE!

28.
MICHELE: In one sentence, what words of advice would you give a mom who has a newly diagnosed diabetic child?

KERRY: Remember you are not alone, and don’t let it take over your life or theirs.

29.
MICHELE: What words of advice would you give someone who has a spouse with diabetes?

KERRY: I can only answer this from the point of view of someone who’s spouse/partner was diagnosed after they got together. Bob didn’t have diabetes when we met and fell in love. So my answer would be – Just love them as much as you always did. They are the same person. But they may need your help and unconditional understanding, and you may have to bite your tongue sometimes – they need to deal with it in their own way! One thing I will say is that sometimes it’s harder being a D-wife than being a D-mum – at least as a Mum, I am (right now, anyway) in control! Sometimes with Bob I have to pick up the pieces when he gets it wrong and just let him get on with it without recriminations, and accept that I can’t do it for him.

30.
MICHELE: How do you help your daughter embrace her diabetes?

KERRY: We just deal with it; we embrace life and love rather than embracing diabetes. That’s the plan, anyway – that’s what we try to achieve. We as parents don’t let it take over our family’s life. We treat it with as little fuss and drama as possible, but we tell Isabel very often (all the time!) how brave she is and how it’s making her stronger and more healthy. We allow her to just be a kid, but insist that she follows the rules when it comes to testing before eating, doing her site changes, etc. We never threaten her with “you might die” or anything like that. We never openly talk about our fears in front of her. Bob has a special bond with her because of their condition and he is very gentle with her, but on the other hand he is very firm if she tries to use it as an excuse for bad behaviour (which does happen!) That’s it, really – I hope that’s enough for her to grow up with a generous amount of respect for it, such that she keeps herself healthy, at the same time as not letting it stop her from doing what she wants to do.

THANKS SO MUCH KERRY…YOU ARE AN AMAZING WOMAN, WIFE, AND MUM. KEEP UP THE GREAT WORK! LIVE LIFE!

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