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It’s All About Letting It In and Letting Go!
Joe Solowiejczyk, RN, MSW
Diabetes Nurse Educator, Family Therapist
Hi! My name is Joe Solowiejczyk and I’m a diabetes nurse educator and a family therapist. My area of expertise is helping families cope more effectively with living with diabetes. I also help families understand that how they communicate with each other, how they support each other or not, will have tremendous impact on how their children deal with living with diabetes – psychologically as well as behaviorally. My real specialty is dealing with difficult teenagers, but that’s not what I’d like to talk with you about today. Today I’d like to talk with you about the idea and experience of feeling powerless when your child gets diagnosed and about how that feeling/experience seems to be at the core of the whole thing. And I know that it’s difficult for the kids when they get diagnosed but I think it’s even harder for the parents in some ways when their child gets diagnosed. That’s what we’re going to talk about today. We’ll talk about that and about what parents can do to deal with this experience, to help them and their children, with and without diabetes, unfold into their lives in a wonderful and exciting way – full of life, love and adventure!
What do I mean by “powerless” or “powerlessness”? What I mean is that feeling that you got (which you most definitely remember!) when your child was diagnosed. That horrible, pervasive and deep feeling that despite your best efforts as a parent to protect your child from any harm, you were powerless to prevent them from getting diabetes. That’s why I think it’s harder for the parent some times. Because when you love someone, especially a “someone” whose life and well-being is in your hands, you believe that you would throw down your life in order to protect them from harm. When your child gets diabetes, you realize, perhaps for the first time, that there are some things that, despite your best effort, you can’t protect them from; that some things are out of your control and that despite your best effort at making sure that they get enough sleep, that they get healthy food for their nutrition, that you make sure that they get the love and support that they need in order to feel good about themselves, that despite all that and more, you COULD NOT PREVENT THEM FROM GETTING DIABETES!!! This is the feeling and experience that I’m talking about. And if that’s not bad enough, then there’s the additional feeling of powerlessness when you watch your child taking their injection or having a low or feeling grouchy because their blood sugar is high or watching them poke their fingers for their blood sugar checks – where you wish that you could just
take “it” from them. And despite all your wishing you face the reality that you can’t and it just pulls at your heart as you shed a few tears and push on because this is the morning and you’re all getting ready for work and school. This is what I mean by feeling powerless. That deep and profound feeling of bumping into the wall of reality and having to face a reality that you’d rather have it be different and that you’d rather not have to accept. Let’s talk about that.
Acceptance & Letting Go
As I mentioned at the beginning of our conversation, I’ve had diabetes for over 50 years. The following thoughts and comments about how to deal with the feelings of frustration, despair, hope, rage and exhaustion draw from my personal struggles with living with diabetes as well as my professional role as a diabetes nurse educator. I feel fortunate, in a way, that my personal experiences and struggles with diabetes have informed my professional approach. It makes what I do feel real and that my approach is based in daily experience as well as in book knowledge. For me, working in diabetes and having the ability and privilege to work with others, is like the St. Francis prayer coming to life, “…for it is in giving that we receive, it is in loving that we are loved…” and my own insert along those lines, “it is in healing that we are healed”.
In my years of working in the field of diabetes I think that the families that are dealing with their feelings with“eyes wide open”, acknowledging the feelings but not indulging them, are the ones that tend to do better. And that’s exactly what I mean by “acceptance and letting go” – embracing the feelings that come with the feeling of powerlessness but not indulging them. Letting them come up, feeling them and moving on, realizing that there’s no “fix” here, it’s not a wound that band aids and stitches can heal. What’s needed is courage and determination to embrace the feelings AND move on.
That’s at the core of acceptance. For only by acknowledging the feelings – anger, sadness, frustration, fear of the unknown, despair and exhaustion – and accepting the situation for what it is – with all the attendant difficult feelings and realities – is it possible to move on, to move forward into the unfolding of one’s life. For years I struggled with tremendous amounts of rage aimed against it because I felt it wasn’t “fair” that I had it and for having to take care of it all the time, frustration at not being able “to solve the puzzle” in a way that would make it go away. It sort of felt like I was trying to trying to punch my way out of a paper bag; frustrating and exhausting, but still being left with the feelings and having them organize my life. It wasn’t until years later that I finally had the wherewithal to stop fighting and start accepting. By really getting tired of feeling tired all the time, and sad and angry, by working with a skilled and compassionate therapist for years, by opening myself up to allowing others to help me and by talking about my diabetes with trusted friends and colleagues, I finally managed to stop fighting it all the time, started to open myself up to feeling the feelings and recognize them as guides, helpful rather than harmful, as to how I should proceed.
That’s why it’s so important for couples and parents and families and kids to talk about this stuff. It’s the opening up, expressing those feelings deep inside, to another person and, most importantly, feeling “heard” that allows for the healing to occur. And it’s not a thing that we deal with and then never have to deal with again. It’s an on-going dialogue, an on-going wrestling with, that we are engaged in when having to come to terms with the reality of living with a child with diabetes. And I think prayer really helps, especially in dealing with the powerlessness. My favorite one that helps me deal with the feelings and the realities of a high blood sugar, even though I’ve done everything to make sure it should be between 4.0 -8.0 but it isn’t, is the Serenity Prayer: “God grant me the serenity to accept the things I cannot change, the courage to change the things I can and the wisdom to know the difference.”
The benefit of a prayer like this is that it helps one to realize what they do have power over and to not have to wrestle with things that are out of our control. I do have the power to do my best at managing my diabetes, at balancing carbs with exercise, at taking what I think is the right correction bolus, etc. And, knowing that I’ve done my part, given it my best effort, to then let it go! Not to give in, just to realize that managing diabetes is difficult, and that getting numbers out of target zone doesn’t mean that I’m incompetent – it just means that I have diabetes! As a parent, it’s tremendously difficult to not beat yourself up when the numbers don’t come out right. Of course it’s important to try and keep your child’s numbers as close to target range as possible, without experiencing too many lows or too many highs. However, it’s also important to not beat ourselves up over the results – if we’ve put in our best effort.
And that, in my mind, is the most difficult part of living with diabetes – all the work that goes into the process of managing it on a daily basis. It’s totally exhausting! If you don’t live with it you don’t know how exhausting it is. That’s why it’s important to take breaks every so often and why it’s totally normal to break down every so often. If you’re having an occasional breakdown then it means that you’re working it! I think you’re nuts if you don’t have the occasional meltdown – crying, feelings of despair, sadness and frustration. Then we just pick ourselves up, pat ourselves on the back for being honest and courageous for facing up to the feelings, then move on.
That’s the great spiritual learning in living with diabetes – you don’t have to like it but you do have to do it. And that’s what parents need to teach their kids – that you can do it and not like it at the same time. Hating it and doing it are not mutually exclusive states! And facing the feelings, dealing with the daily challenges, and still being excited about being alive and all the wonder that goes along with that. The reality is that all of us are on our own “learning plans” provided to us by God or the Cosmos. Living with diabetes is one of the big learnings that we have to address as part of the plan. It takes courage and determination to stay engaged and provide our children with a sense that even though they have diabetes there’s nothing that they can’t hope for and do. But in order to be able to provide our kids with that sense of wonder and engagement about life, we, as parents and adults, have to be open and honest about our own feelings and challenges. Doing that will provide our kids – with and without diabetes- with the tools that they need to find and be themselves.
A Guide on the Journey
Learn more about how you/your family can chat (via Skype) with Joe Solowiejczyk (RN, MSW), world-renowned Diabetes Nurse Educator and Family Therapist.
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