As my heart breaks that my son will deal with this for quite some time, I am motivated to make this a very positive empowering and supportive experience. I have a couple desires for him. Number one: live in freedom. Number 2: get good a1C reports. Any other thoughts?
That my son is accepted in society.
That he strives to acheive any dream and not to hold back because of diabetes
That he just enjoy a long life and that having diabetes is not a curse but just another challenge life has thrown "our" way.
I agree with you.... especially like your desire for it not to be a curse. It is a challenge, but everything in life is. No one gets off scot free. You are either the victim or the victor. I choose victor.
When we got the diagnosis for Kathy, I felt that she was probably one child that could definitely handle it. She is very strong-willed and once I explained the importance of things (like eating right, checking her sugar, doing injections), she has taken it on completely. I think my greatest desire right now (other than her continued good health and control) is that as she gets older and goes out on her own, she will take the responsibility seriously and know that her health is first and foremost. Right now she feels very special having this disease and it has become a part of all our lives. I hope that she can continue to keep it "out there" and not hide it from anyone. I know the more people know about diabetes (especially Type 1), the better it is for all involved.
I wish for them to be happy.....healthy......and someday cured!!!!! :)
My desire is for people to become educated and know the truths of what are children experience, for him to never have self pity and focus on his accomplishment and strive for more success. I want for him to feel like his brothers and sisters and to never feel left out. I want for him to never have to lay in my arms in fear because he is so low he can not feel his legs. I want him to be grateful for what he has and that he doesn't have cancer, turrets or autism, or some other horrible things that other people may be going through. I want him to go through life knowing that he is strong and he can do anything he sets his mind to. .... and to be cured would be one of the best thing, huh. I love my little man, I want, want, want, him to live long and healthy!
Freedom is an excellent word. I work so hard to make my 7 year old daughter feel like she has some independence. I find myself sneaking around corners and watching her out of the corner of my eye so that she doesn't catch me watching her and feel smothered. The pump has been a Godsend. My daughter tests her own fingersticks, enters her own blood sugars and carbohydrates and administers her own insulin. I give gentle reminders but she talks aloud everything that she's doing. She is my youngest of 6 children, the first 5 being boys. So you can only imagine how hard it is even without diabetes. Ha ha.
Another consideration of diabetics living in freedom is community awareness. The more society is aware, the less these kids will be ashamed or embarrassed of their diabetes. I've seen it in my practice (as a Nurse Practitioner) and in kids in my Type I support group that I started, as well as on the blogs. These kids cut their noses off despite their faces, choosing physical suffering over emotional suffering. I want my daughter to have the confidence and freedom to take charge of her diabetes publicly. And one day be a role model for other children.
I also want my daughter to have the freedom in school to be cared for and allowances made for her without making her feel entitled, angry or ashamed. I don't want her to think that she is owed anything but I want her to have the ability to act on diabetic needs independently without interference. She goes to a wonderful elementary school now, but the teachers need a lot of education. Every year. And even with my involvement, mistakes are made, and stereotypes are set.
More than good A1Cs....... I want a cure!
Here's one of my daughter's greatest desires: "I want to be normal."
It's ironic that normalcy could ever be considered a great desire. But that's what this disease does. It's disruptive to our entire family's lives, and destructive to our daughter's health. It takes us far from normal.
As we enter into her teenage years, we become acutely aware of how any differences can become magnified in a social sense. Everyone notices the new pocketbook...or jeans... or hair style. A pump on the hip, or a low blood sugar incident sometimes shatter the ability to easily fit in.
What we need to remember as parents is that "fitting in" is a state of mind. It's learning to become comfortable in your own skin. It's building confidence in yourself despite any setbacks. That's why we work hard to maintain control of the disease and support her growth in self-esteem. That way, until a cure comes, we can at least help to make her "feel normal."
The idea of feeling “normal” is certainly something we have dealt with. My son was diagnosed on Christmas Eve Day at the age of 11 almost 27 years ago. So we have now gone through all the different stages, first girlfriend, teen years, driving, college years/drinking, marriage, and building a career.
When Jeff was first diagnosed he didn’t want anyone to know, he wanted to be the same “normal” he was before Christmas break when he came back following the break. As you have undoubtedly experienced it is really difficult hiding diabetes from school mates. We had to establish a certain group of those who “must know,” but I did this because I wanted to honor his feelings.
It wasn’t until he turned 15, and we were transferred to another state and had the opportunity to put Jeff in a small, private Christian school that things changed dramatically. He was very active in all sports and fortunately he started opening up to his team mates and his first girlfriend and everything changed. In fact he began to feel almost “special” because his teammates really looked out for him, a couple of them even started carrying juice for him on bus trips.
So, in my experience once these kids open up, it becomes so much easier as a parent, and in Jeff’s experience they accepted him for who he was even though he still had to deal with everything diabetes throws at you, but he was no longer embarrassed about it in front of his friends. I do recognize not all of you will be fortunate enough to have this same experience…
So to you parents, hang in there…
Oh yeah, the "I want to be normal" statement. Tough discussion actually. Altering perceptions is the key, I agree 100%. All children feel "abnormal" at some point and parents and families should be there to support and praise each child's differences and talents and teach their children to do the same. Although our first thought of this conversation with a diabetic child may leave a pit in our stomach, we also need to bear in mind the old saying forewarned is forearmed and we can be ready for it. :o)
Another way of addressing this is that as a family we must establish a “new” norm. Now, I know not everyone will agree and that is OK. But quite frankly all the dynamics within the family must change, especially those of you who have other children, because what was “normal” to them has changed as well.