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.
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:
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!
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.)