Coping With A Child’s Illness

Hello Janet,

I have a 3 year old daughter (going on 4 in March) named Julia. Two weeks ago, she was diagnosed with Type 1 Diabetes. She was hospitalized for a few days. We are all having a very hard time here at home.

The hospital stay was traumatic. Julia was being poked and prodded almost every hour, she cried each time. At one point she cried out, “I never even hurt anyone. Please don’t hurt me. It’s not fair.” Now here we are at home and we continue to poke her, give her shots.

I have been following your articles for some time now and I have always tried to be a respectful mom, working with my daughter, listening to her feelings, letting her do things when she is ready.

What we now have to do to keep her alive and healthy, I feel, affects our relationship. Waking her up during the night to check her and give her a shot. We do this about 6 times a day, twice at night. She often says, “Please don’t hurt me.” or “I’m not going to eat today.” Trying to get her to eat is stressful, whereas before all this, if she wasn’t hungry, I wouldn’t push her to eat. Now, she has to eat at a somewhat timely manner, especially if we have given her insulin for the food she is about to eat.

We are all tired. I feel worried and stressed all the time and I keep struggling with ways to explain things to her in a way that she will understand, but not scare her. She cries each time we have to check her blood sugar and give her a shot.

Do you have any advice for me as to how to deal with ALL of this? How can I still be respectful of her and her feelings even though there are so MANY things that she now has no control over? Do you have any thoughts on how to explain illness to a young child?

Any thoughts would be appreciated.

Kindly,
Elizabeth

Hi Elizabeth,

Your letter overflows with sensitivity, respect and passionate love for your daughter. I can’t express in words how sorry I am for the pain and suffering your family is going through. My heart goes out to you. But it sounds to me like Julia is in very good hands.

Julia is being forced to face one of life’s truths earlier and more harshly than most of us do…life isn’t fair. Unfortunately, you can’t shield her from that truth, so the best thing to do, I believe, is to acknowledge it. “Yes, this hurts and it’s uncomfortable and it’s not fair at all, and we don’t know why this illness has happened to you, but we love you so much and we will all get through this.”

When you must do things like shots and feedings, acknowledge her feelings, but come from a platform of strength… “I know you’re upset about the shot and I’m sorry you have to have it. You are our wonderful, beautiful, lovable daughter and we must take the best possible care of you and keep doing everything we can to help you get better.”

This situation is stressful for you and for Julia, but I don’t believe it will negatively impact your relationship at all. Not if you continue being honest. In fact, I think this experience will bring you even closer.

The challenge is to acknowledge all of her uncomfortable feelings and allow her to have them to the hilt without letting them crumble you. We all have this challenge with toddlers — with any intimate relationship, actually — allowing the other person to have his or her feelings without “taking the feelings on” and absorbing them. Let yourself break down as much as you need to when you are alone with your husband or friends, but try to distance yourself emotionally when Ava is crying about shots and discomfort. I know it’s hard to do, but she needs to bounce her feelings off of you, express them freely without it worrying, panicking or upsetting you. And when Julia senses you are upset and worried, the shots, the eating, everything will be much, much harder for her.

“How can I still be respectful of her and her feelings even though there are so MANY things that she now has no control over?”

You can be respectful of Julia and her feelings if you allow her feelings to be her feelings and let them be all over the place while you assure her, “You are the most special girl and therefore we must do the most excellent job caring for you.”  Tell her this and say it to yourself. It will keep you focused and give you strength when doing an excellent job means doing lots of things she doesn’t like or want. All parents deal with this dynamic to some extent. Take a deep breath, calm yourself, and tell her that you know she’s not hungry, but that she must eat a bite or two. Stay confident. This is being the best possible parent, the strong, brave, loving leader every child needs.

To help give her a sense of control, keep thinking of care she can do for herself and choices she can make about the food, the insulin checking, the shots, etc. There may be things she can do or choose that haven’t occurred to you.

Honestly, when I first read your email, I felt a little overwhelmed and unequipped to advise you. I had planned to ask you first if you’d like me to forward your note to a RIE mom/therapist friend of mine. Once I started writing, I had more to say than I had thought! But I am happy to send this to my friend to give you more support. Please let me know if you would like that.

And PLEASE keep in contact with me… You’ll be in my thoughts and prayers.

With Love,                                                                                                                                                                                          Janet

I took the liberty of forwarding Elizabeth’s note to my friend and associate, Marriage and Family Therapist Miven Trageser who kindly shared her insights and advice, the gist of which (I was relieved to see) was in sync with mine…

Miven wrote: “If possible, your ability to say, ‘I know it hurts and I’m here,’ will be validating and empowering…”  Also: “I would recommend keeping it very simple with explanation for her, keeping it very matter of fact, and conveying a calm sense of authority around what needs to be done. Getting your own feelings out elsewhere will probably help support you in doing this and being this bastion of strength and certainty for her, like acknowledging the pain that she feels from the shots, but reminding her that it is fleeting.”  (Thank you, Miven!) 

A few days later, Elizabeth responded:

Janet,

I want to thank you so very much for all that you wrote.  For being so thoughtful and understanding.

I am sorry I did not respond sooner, but on top of everything else going on, Julia has been sick this week with a bad cold and now I am sick!  Ahhhh….  fun.  🙂

I so, so, so appreciate the support that I have gotten from you and your friend Miven.  I can use all the support I can get right now.

I was blown away by your email.  Thank you so much for your wonderful thinking.  I originally wrote to you because I respect you and I know that you truly get children.  I read your articles every day.  

One of the things that you talked about that is very important for me right now, is not to take on Julia’s feelings. It is so hard to see your child suffer.  And because of the hospital stay and the shock of finding out she has diabetes; I think I just felt so overwhelmed.  So, that is something I need to remember, that she can cry about the shots, etc and that I can just listen to her.  And then have my feelings about it later on (which I haven’t done much up to this point!).

I will write again and keep you posted.  For now I just wanted to say, THANK YOU!

Kindly,                                                                                                                                                                                            Elizabeth

 P.S. We are being seen by an endocrinologist and have help from the medical side of all this. What I found lacking was the emotional side, which was why I contacted you!  Every day it gets a little bit easier.   

(Photo “Mummy will make it better” is by gemsling on Flickr.)

20 Comments

Please share your comments and questions. I read them all and respond to as many as time will allow.

  1. Elizabeth,

    It has been a little over 3 years since my son, Richard, was diagnosed with Type 1 diabetes just 2 weeks after his 1st birthday. I have been where you have been, and you’re right — it’s overwhelming in every sense of the word.

    My best advice for you: go just one BG number at a time. Focus on what’s directly in front of you. There is a lot to learn, and it’s easy to burn out from information overload.

    As for your relationship with your little girl, there is tremendous power in giving her choices over the little things in her diabetes care: which finger do you want to test? Do you want to have your shot in your arm or in your tummy? Would you like apple juice or grape juice to treat your low blood sugar? She has to know, though, that no matter what, you will follow through and do what needs to be done to keep her safe and healthy — even though it might hurt for a little while.

    Try to be as businesslike as possible when it’s time to do the tough stuff. When Richard was first diagnosed, we only gave shots in the bathroom, so he would feel safe in his room and other parts of the house.

    Also, it is REALLY helpful to talk to other parents of T1 kids, especially when you need emotional support. I found that my girlfriends just couldn’t really understand the enormity of what I was facing as a parent — it was only when I stumbled across http://www.type1parents.org that I found my first real support group.

    I hope the blog author will pass my email address on to you — I would be more than happy to talk with you further, about D care in little ones (and how to cope with that eating issue — I have advice for you!) or just a shoulder to cry on.

    Hang in there. Day by day, it gets more manageable, but the beginning is so, so hard.

    Love,
    Katie

    1. Katie, how wonderful of you to leave this comment and share so much wisdom. I will definitely pass your email address on to Elizabeth. What a lovely person you are! Thanks a million!

  2. Hi Elizabeth,

    I am so sorry about Julia’s diabetes. I can only understand a bit since i had insulin dependent gestational diabetes and those shots and finger pricks are very painful. While it’s no where near what you are going through, a few months ago my 2 yr old son was diagnosed with multiple food allergies. After an allergic reaction to penicillin we had him tested and turned out he was allergic to soy, egg, treenuts, and peanuts. We always ate soy foods and with no incident (we did a food test later and turns out it was a false positive for soy) but suddenly i had to take away all his favorite foods. I’m japanese so we eat a lot of soy sauce based foods and suddenly i was serving salmon with a lemon sauce and he kept asking for teriyaki. i tried to explain why we were eating differently but clearly to a 2 year old it wasn’t clear and he didn’t like it one bit. we also started to take all our own foods to parties and that’s been a challenge as well. i know it makes him feel bad and asks why he has to eat differently than the other kids. it’s been a struggle.

    Certainly giving insulin shots is quite different from taking away favorite regular foods but both situations are probably very confusing. what’s helped us so far was getting children’s books about food allergies. i find that for my son, a book or a puppet show dealing with a “situation” seems to drive a point much better than me and husband just trying to talk and explain what it all means with words. i’ve also joined some online groups for support and still searching (unsuccessfully) for a play group in our part of town with kids with allergies. i think i’ll find it someday as i think my son grows older finding other kids in the same situations may help him understand his disease a bit better. good luck!

  3. Elizabeth,

    Miven Trageser (a dear friend of mine), sent me this posting. My daughter Ava was diagnosed with Type 1 Diabetes 2 years ago at the same age as your daughter. She was diagnosed in December and turned 4 in March.

    I agree with all that was said above. This is the most challenging time- diagnosis. You will soon feel a new normal, with periods of sadness and self pity which don’t last long when they visit.

    After about a year of getting poked and injected, my daughter cried after an injection and yelled at me ” you always hurt me mommy!”. I was a bit startled because it seemed like she was so ‘brave’ and no longer was crying with each injection. So, I tried to comfort her (and myself) with ‘You barely cry anymore, I just thought it doesn’t hurt’. And, her reply really hit me hard, she said “Mommy, diabetes always hurts!”. I was so upset. And, realized that I couldn’t stand that I ‘hurt’ her daily with needles and prickers. But, it was liberating, too, because I had been stuffing all my feelings and wanting all of us to be okay with diabetes. I realized that this is her life experience unless a cure is found. When I fight it and want life to be different, I suffer.

    So, Diabetes really stinks. But, because of it, Ava has become so mature and developed a lot of empathy for others. She has an awareness of her body. And, we have made a lot of friends in the Diabetes community where we live (Berkeley, CA). (camps, etc.). We have surrounded her with diabetic babysitters and others who take care of themselves (positive role models). She was also diagnosed with hypothyroid (which is common for type 1 diabetics). I now feel so blessed that she has a diagnosis with management. And, community. There are a lot of diagnosis out there that have no hope and a lot of uncertainty. But, I wouldn’t bother looking at the bright side until you get there. And comparing is not helpful. The first months are boot camp. And, I bet you never thought you would be trained as a ‘nurse’. Make sure to take time for yourself and allow others to help out as much as possible. And, although we use injections, many people swear by the pump. So, whatever works for your daughter and family is what is best. I wish you a lot of healing.

    Best,
    Terri

  4. My daughter’s best friend was seven when she received her diagnosis of Type 1 diabetes. Her mother is a childhood friend of mine and also has Type 1. She had always been told it skips a generation and the diagnosis was crushing on many levels. But she is a great mom. One thing she did was to be open with me and a few other moms and THE KIDS. Since our girls were at school together, my daughter became her biggest and most willing ally. We gave my daughter the choice to take this one on or not, and she did. She went with her friend for pokes and testing in the nurses office and stayed with her when her numbers were low or high. While not our first choice as parents, both us moms agree it was an important part of “the new normal” that her friend lives with. It isn’t taboo.

  5. Hi Elizabeth! As an adult with Type 1, I can still remember the feelings of helplessness when I was first diagnosed (though I wasn’t as young as your sweet girl). It can be so overwhelming – for parent AND child – if you don’t have support in a variety of ways.

    I encourage you to look into the message boards on the American Diabetes Association website. There are groups there for parents of diabetics, and those parents can share their trials and successes with you. Also, talk to your hospital to see if there is a support group for newly diagnosed children/families. When I was diagnosed as a young teen, I joined a group and my parents also attended their own group. I remember my “pre-teen” group met right after a children’s playgroup – there may be something for your daughter. Sometimes having a meal with another child who has to do what she does can make it seem a little less frightening.

    I loved all of Janet’s suggestions. I especially want to echo the idea of giving Julia choices when possible. Are you carb counting? If so, at meal times, try offering two different choices – a snack of 15 grams of these crackers or this fruit, for example. Perhaps if she feels a bit of control in what she’s eating, she will feel a little better about eating it.

    Above all else, remember that this is still so, so new to both of you. She WILL grow to love and respect the gentle care you’ve taken of her over the years. Allowing her to FEEL what she feels and own those feelings is the biggest gift you can give to her.

    Don’t lose heart! You’re doing an amazing job! If you’d like to contact me about anything, please feel free! You can reach me at karajketter@gmail.com

  6. @Katie, @Michi, @Terri, @Dawn and @Kara,

    I don’t know if Elizabeth has had the opportunity to read your supportive comments yet, but I just want to tell you how touched I am by your kindness and thoughtfulness. Thank you!

  7. Everyone has had such great advice. My experience is much less as I have not had an ill child myself. But I thought of the Magic Glove technique that I have heard is very helpful when children need to repeatedly endure painful medical procedures. It’s not a RIE technique, but with your sensitivity to your child you could probably adapt it to give her more control and make it more RIE-friendly. Here is a .pdf explaining: http://www.childlife.org/files/MagicGlove.pdf

    Take care, everyone.

  8. avatar Marilyn S says:

    Such heartbreak… Please read Wheat Belly by Dr. William Davis. He is seeing great success in reversal of diabetes by eliminating wheat and grains from one’s diet, including his own diabetes. It’s worth a try.

    1. Type 1 diabetes is not at all the same as type 2. Type 2 is typically diagnosed in adults and is usually reversible or manageable through diet. Type 2 is caused by diet and lifestyle factors and is a result of insulin resistance -the pancreas is still producing insulin but the cells don’t use it properly… Type 1 is usually diagnosed in children and it is a result of the pancreas not producing insulin or not enough insulin. It is not reversible. Please be careful. Thanks!

  9. My heart is hurting for all of you with sick children.

    Elizabeth, I wonder if it might help your daughter to feel more powerful if you provided her with syringes (no needles of course) and similar items used for her medical treatment and let her use them with her dolls? Perhaps even go through the process of ‘injecting’ the dolls and letting Julia ‘speak for them’ or be the doctor? Play is a very powerful tool in these situations.

    Also I would encourage you to give her plenty of opportunities to draw, and read children’s stories about hospitals and illnesses. Play will help her to process the experience.

    All the very best to you all.

  10. avatar andrea.king@ says:

    Dear Elizabeth,

    Your letter moved me.

    My son was diagnosed five months ago, on his second birthday. He went into DKA, collapsed and was airlifted, via helicopter to Children’s hospital. We spent a week in the hospital and I DID NOT want to leave. I could not imagine ever learning all I had to learn and getting through it, day after day.

    But I did. And you will, too. I have had five months of getting used to this “New Normal.” It is not easy. No one, but another parent going through this will ever understand the fear, the stress, the constant vigilance, the loneliness, the exhaustion. People don’t even know what Type 1 is. They think that it’s diabetes like their grandmother had…”just don’t give him sugar.” etc. I didn’t know either, until our diagnosis.

    Order this book ASAP: EverythingParent’s guide for Children with Juvenile Diabetes. This book really made me feel so much better about so much.

    http://www.amazon.com/Everything-Parents-Children-Juvenile-Diabetes/dp/1598692461/ref=sr_1_1?s=books&ie=UTF8&qid=1328676498&sr=1-1

    You need to get support from other parents. That has been my saving grace. I am here. Please contact me at andrea.king@mac.com. Anytime. Day or night. I’m only five months in, but I’ve sadly become an expert. And five months from now, though it doesn’t seem that way now, you will be helping another mom get through this.

    When my son was diagnosed, many people reached out to me with phone numbers of people to call. It was a bit overwhelming at first. But when I DID reach out, when I needed help. Other mothers and fathers were there to advise me.

    I suggest getting on the JDRF LA support group on Yahoo! It has helped me numerous times. Just post a question and immediately there are posts. If you don’t live in LA, contact the JDRF office nearest to you. Also JDRF will send you a kit with books and a diabetes bear for your daughter. All for free. JDRF has been great. I am now on the board in LA and can connect you if you are here.

    One thing I do with my son was that works, is that I involve him in the entire process. I let him pick the finger that he wants to be pricked. Lately I’ve taught him to spin his hand around and let the finger pop out. I let him open the alcohol packet and wipe the insulin bottle. I let him put the little plastic lancet in the tester and I let him “Twist” off the cap. I let him hold the monitor, I let him put the strip in the monitor. He waits for the “Beep.” I did this from day one, and I think it’s made it much easier for him to feel a part of this process. Sometimes he shows his friends. I feel doing this has given him power in the process. He asks “What my number is?” I bet letting your daughter help will make her feel more in control during the difficult times.

    I bought my son a doctor’s kit immediately after we got out of the hospital. He still had a memory of the doctors taking his blood pressure, listening to his heart etc. so with the kit he was able to pretend. He takes the kit with him to the doctors sometimes. It also gives him power.

    Do you have support via Children’s Hospital or your doctor with a nurse that has been assigned to you? Our nurse, Mary, has been amazing. I wouldn’t have gotten through it without our daily phone calls.

    A friend recommended a great therapist to me. Beth Braun. She is a Type 1 Diabetic and she works with families, and kids to deal with every aspect of this disease. She is kind and generous and I only met with her once so far but she gave me great insight that was truly invaluable. She told me what a low feels like for my son. She told me that he wasn’t going to die, which was my great fear.

    (310) 413-1760.Beth Braun PhD

    I just started giving my son insulin after he eats. We were having a difficult time giving him insulin before the meal. It is only temporary, but I am doing it so that we remove the pressure he was feeling to eat every carb that we had bloused him for. It is working very well. But we made the change with our nurse’s approval and guidance.

    Again, please email me and we can talk on the phone.

    Stay strong. You are doing great. This is hard. Crazy hard. It will get easier. But stay connected to other Moms. We are here for you. andrea.king@ mac.com

    Andrea

    1. I’m so sorry you and your daughter are dealing with this, Elizabeth. I have type 1 myself, and worry about my kids getting it – I think that would be harder to manage emotionally.

      I know you need emotional support right now, for you and your little girl, but I wanted to second the suggestion of insulin after food. The pressure of having to eat is awful! Insulin later means you can cover what’s been eaten. Much less stressful for all. Of course, you need to talk to your healthcare providers first, particularly in the early days, but know that eventually you and your daughter will know more about this disease and, importantly, how it plays out in your child, than any medical professional! You will work it out.

      With very best wishes to you and your sweetheart.

  11. One more thing that might help…when we were in the hospital and they first started testing his blood, I made up a little rhyme which I’d recite as they tested him:’ “quick prick so you don’t get sick!!” he then started saying it, and tbe doctor there said she was going to start using it with her toung rype 1 patients there..we kept saying it for a shile after we went home.

  12. I really love your website and your posts… I’ve learned so much. I did want to reply to this because I think what you said is exactly right. Validation, compassion, and empowerment are the keys to parenting in general but for a child with medical needs, these things are absolutely vital. Our older son had significant medical issues (more than I could ever type in a little note)… but we did our best to train him on his own equipment, give him choices about when he could do treatments (before or after certain things), let him have control over as much as he could in his life, and worked hard on helping him express his feelings, thoughts and ideas. It’s not easy, but it’s so very important.

  13. My own experiences with one of my children, who was very sick and in the hospital near death many times between the ages of 10 months and 3 years, came pouring back as I read this letter. I remember being in the ER with my son (yet again) at age 1 and struggling just to get him to keep his nasal canula in his nose. Without it, he wasn’t getting enough oxygen to his blood, so it was critical that he keep it in. I remember feeling the most empathy I have ever felt in my entire life as I looked into his horrified, big blue crying eyes. At that moment I said, “A, it’s OKAY to be mad. I’d be mad too! But you HAVE to keep this in.” At that moment he quit struggling and just cried, and in his little one-year-old voice said, “I’m maaaaa!” Those where the first words he ever spoke.

    What that taught me was that empathy and validation are so critical for our children. They need to know that they are allowed to feel the way they feel, and that it’s okay to feel that way, regardless of the things going on around them and in them that they can’t control.

    Much luck and love to this mama and all of you mamas with sick kiddos.

  14. Some hospitals have child life specialists that are awesome at helping with the emotional part of a diagnosis

  15. I wonder if Janet would agree to allowing your daughter to help with her glucose checks? For example, you can ask her to retrieve the glucometer kit, choose which finger she will get pricked, open the alcohol packet and wipe her finger. Maybe if you allow her to help and have her direct her attention to preparing her finger then she is not watching you do it and waiting for the pain.

  16. I’ve been an avid reader of your posts, Janet, but this one particularly resonated with me. I’ve had type 1 diabetes for 28 years, and am intimately familiar with the emotional rollercoaster of living with this invisible disease. What I can offer to Elizabeth is hope and support. Hope that a cure will happen in Julia’s lifetime (hopefully before she goes to college, if that’s where she’s headed), and support through a wonderful non-profit I’m a part of called Beyond Type 1. Julia might like “Jerry the Bear” (https://beyondtype1.org/meet-jerry-bear/) that gives a young child a “bestie” who understands type 1. They are handed out in hospitals to newly-diagnosed kids.

    Best of luck, Elizabeth, and take good care of you too,

    Lisa
    lisa@voxpopfilms.tv

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