Blindsided...twice


(bsteingard) #21

Hi @ryanandjenn
24 years ago I was that terrified daughter that had to be physically restrained for insulin injections. I hid under a chair at my first endocrinologist visit and hid before every meal for weeks after. Do your best to explain what’s going on and your kids will thank you for it all later. There are some really good resources out there for children. The Care Kit that Dennis mentioned is great, but I think the Bag of Hope would be more appropriate (http://typeonenation.org/resources/newly-diagnosed/bag-of-hope/). I also had a computer game called “Starbright Life Adventure Series: Diabetes” that was really helpful. It’s available used on Amazon, but I’m not a Windows user, so I’m not sure if it would still work on most computers. In any case, if there’s any way that you can make a game out of being diabetic it might make things easier for your children. The diabetic Teddy Bear that comes in the Bag of Hope would also be great for that. One last thing that helped me was being given some control over the process. If I cooperated I got to decide where the shot was given and I devised a whole evaluation process to pick the spot that would hurt the least. My parents had to pick a spot, tell me how far it was from a bruise or bandaid, and then poke the spot they had picked so I could tell if it was already sore from a previous injection. If I didn’t like the spot we started over. Then once we’d agreed on a spot they couldn’t actually give me the shot until I said I was ready. Oh! And if the shots are painful, I’ve heard good things about the bionix Shot Blocker (https://www.bionix.com/healthathome/product/shotblocker/ - might be cheaper on Amazon, or maybe your doctor can get you a sample one), though I didn’t have one myself.


(Bruce Johnson) #22

Ryan,
Our family also had two children with T1D, my sister and I. My sister was diagnosed first at the age of 18 months. I found out in later years and from experiencing living with a T1D how difficult it was for my parents at that time. Luckily both of our grandparents lived in the same city so myself along with 3 other siblings were farmed out for a few months while my parents spent the majority of their time at the hospital with my sister and learning about caring for a diabetic child. This was in the 1950’s and diabetes was pretty rare in our city at that time. My sister was in the hospital for about 5 or 6 months back then. Once our family was reunited I remember my Dad being in charge of sterilizing the insulin syringes and needles and then administering my sisters shots. My parents tried to keep the process private but as kids we naturally were curious and eventually were sometimes called upon to be with my sister while my Dad gave her her injections which also helped to distract her a bit because it was often painful with those old thick needles. I also remember my older sister, trying to be in charge,and be with my youngest sister most of the time while she had her shots. This didn’t last very long because my Dad had problems with my older sister fainting all the time while she was watching him give the injections. Being the only boy in the family I eventually sat with my little sister when ever she wanted me to be there and try to tell her funny stories and jokes to keep her mind off of the injections. Often she would grab my hand or fingers and squeeze them so hard I almost lost my macho big brother image and cried out from the pain she was inflicting on me. LOL. As time passed my Dad got better and faster at giving my sister her shots and things ran a lot more smoothly. Also, back in those days our family doctor came to the house when you were ill and I know my Mom relied on his help a lot. I was diagnosed at the age of 13 and though I did not like having to be in the hospital for about 7 weeks I adapted to giving myself my insulin very quickly because of my experience with my sister. It wasn’t until I got discharged from the hospital and back at home that the whole family was interested in watching me sterilize my needles and syringes, draw up my insulin and give myself my injections. Up until that time my Dad was still giving my sister her daily injections but that was about to change. I don’t know exactly how it started, whether it was a dare.or a bet or some kind of childish game but suddenly my sister wanted to give her own injections and at first did not want my Dad or Mom to even watch except for when she was drawing up her dosages. I was always watching over her and my parents put a lot of trust in me. It was not very long before she was doing her daily injections with little help at all. I was usually always with her and would give my injections at the same time. We even dared each other to give our injections to each other. It was just part of growing up to us but I know my Dad sure appreciated it because after my parents witnessed my sister and I giving each other our injections my Mom finally lost her fear of giving my sister her injections and we let her learn how to do it on both of us. I am sure this really helped her confidence in raising two T1D children.
I am sorry for rambling Ryan but your post brought back a lot of memories for me and thoughts I have always had about how it must have been for my parents. They were both very quiet people and never complained about hardly anything. If you can, try to get involved with others who currently have or have previously raised diabetic children. The support you may feel after talking about diabetes issues. diets. BS testing, babysitters etc. can be enormously rewarding. If you ever need someone to listen please do not hesitate to contact me.
Regards,
Bruce


(Ryan) #23

I just wanted to sincerely thank every one of you for your replies, suggestions, concern, and support!!! I want you to know that although I can’t reply to each post, I have read and re-read them all multiple times, and I can’t tell you how much comfort and “calmness” they’ve brought me in this storm!

As a father, I think you always have a sort of image in your mind of how you’d like to see your child’s life turn out, and momentarily, this diagnosis shattered all of those images. I’ve always typically been calm, cool, and collected, and it’s served me well in a lot of areas. When this all happened, it was something I couldn’t reason or “manage” my way out of, and I felt completely vulnerable. It was life smacking me square in the face, and I had no answers. When I made my original post, I was in a very low place emotionally. And while I still (and will probably continue to have) moments of fear, anger, sadness, etc. reading all of your replies gave a much needed sense of optimism. From young adults and teens, who have to deal with the pressures of school and social status while managing diabetes, to those who’ve thrived in life while fighting this disease for decades, to parents who’ve shared the same fears as me, you’ve all offered me a sense of hope that my children’s life doesn’t end with this diagnosis, it’s more of a slight detour.

While my family continues to adjust to our new “normal”, I have taken steps that have helped me feel more active in this fight-many thanks to your suggestions and advice. I’ve reached out to our local JDRF chapter and plan on being very active in that area. I would love to find families with children around the same age as mine to connect with and build long-lasting friendships. I’ve spoke numerous times to our medical care team about options that are available (pumps, CGM’s, etc), and they are very much on the same page as us. Our next steps will be dealing with our insurance company, to make sure they’re holding up their end of the deal. I know it can be a fight at times dealing with insurance, but it’s a fight I’m more than willing to undertake on my kids behalf.

As for my kids themselves, they’re adjusting to this life change as best they can. There are still tears at times (mine and theirs), and the questioning of why do I need to get a shot if I don’t feel sick? We’ve tried to be very open with both of them, and explain as simply as we can what is happening in their bodies, and why they need the medicine; not because you are sick, but to keep you strong so you don’t get sick. Coming home from the hospital, I think my natural thought after seeing them with tubes and iv’s etc, was to see them as sick. But in reality, they’re the same, bouncing off the walls, getting into everything, kids they were before. Probably even more so now that they are feeling better. I’ve had to tell myself a few times that they are not “sick”, and they can still do everything they did before they were diagnosed. We just have to be more aware, as parents, and make sure we are keeping their glucose levels on point. As mentioned in a reply above, kids are resilient. I admire how they tend to live in the moment. They can be crying and scared when they get their shots, but 5 minutes later they’re laughing and asking if they can go ride their bikes, or go to the park across the street, after they finish lunch. The shot seems to be the furthest thing from their minds, and they aren’t dwelling on when their next one’s going to be; like I can tend to do. My daughter amazes me almost daily with her progress. She is now doing her own “finger pokes”, with her parents supervision, and getting a little braver/tougher with each injection. Her little brother seems to be picking up on that, and is making little strides of his own. He isn’t on board with the shots yet, but he now will pick which finger we poke. Before he would curl his hands into little fists to try to keep us from getting to his fingers. Small victories, but these are what keep me going.

I still have times of sadness and fear, when I think that we’re just beginning this journey. I fear for what the future might hold for them. Are they going to use this as a means of control as they get older, and not take their insulin as a defiant teenager? Are they going to be teased and made to feel different when they get further in to school? But for now, I’m just trying to focus on the here and now, and do my best to make them comfortable with who they are and what they need to do.

I apologize again for the long rambling reply, but so many of you took time to help a complete stranger, I wanted to make sure I thanked all of you, and let you know where things were at. I fully plan on staying active on these forums, as it has been a godsend for me and my family just feeling like we’re not alone in this. I may not be posting a lot, since right now I probably don’t have much to offer in terms of advice, but I will most definitely be browsing through the forums and cherry picking tips and suggestions I come across.

Thank you all again!
Ryan


(sonata) #24

Ryan, I CAN HELP YOU. I know some tricks that will make a HUGE improvement in your child’s experience. I tried to find a way to send you a private message, but it appears this site doesn’t allow it.

Please send me an email to the username of jan.a and the domain of sbcglobal-dot-net. I promise that I’ve been there and I can help. Hope to hear from you soon. :slight_smile: Jana


(SuperSam101) #25

I’m not old enough to have children or anything…yet, but it sure as hell doesn’t help me. Knowing that I might bestow this relentless disease on my beloved child. If I gave my child diabetes at a young age or at a old age I would literally break down and cry. I love people (usually) and for me to hurt someone like that. Giving them the disease would hurt them for a long time. I would know that it was my fault they are suffering. The fact that you have the ability to bring this topic up in this forum is amazing. Stay cool @ryana djenn


(joe) #26

@supersam101 the odds of passing down t1 to a child is less than 10:1, if you consider the genetic crap-shoot of having kids, it’s hardly an issue and absolutely not fait accompli.

when we had our son, I did wonder (euphemism for a nervous breakdown) if he would be okay, all I can say now is who better would understand him, and who better could take care of him than I? I would put my back against his and take on the entire world if it were necessary, and it is this feeling that binds you to your kids. You can’t protect them from everything, heck with the madness in today’s headlines i’d say you can’t protect them from anything… all you can ever hope to do is prepare them.


(Ryan) #27

A big part of why were so shocked by their diagnosis, is there isn’t anyone else in our close relatives that has diabetes, including my wife and I. The closest we could find when we started digging, was one of my moms aunts who developed type 2 late in her life.

We were admittedly very naive when it came to diabetes. We always assumed if we took care of ourselves and watched what we ate, excercised, etc that we didn’t have to worry about diabetes. We’ve always been a very active family, and diabetes never really crossed our minds. Obviously we’ve been educated about the reality of it now.

So no, I feel no guilt about “giving” them this disease, since there was no real way of knowing. And honestly it wouldn’t matter anyway. The guilt, if you want to call it that, is the fact that I can’t take this burden from them onto myself, which I would do in a second. To Joe’s point, I would go to battle for my kids anywhere/anytime regardless of the odds. Unfortunately, with this disease I can’t fight for them, only along side them.


(Dennis J. Dacey, PWD) #28

Ryan @ryanandjenn you are right about fighting along side your kids with their diabetes. Although I cant say that I noticed this 60 years ago my siblings [I was one of eight] and parents fought the battle behind the scenes. Just recently at a three day party, one of my sisters said something to the effect ‘we just wanted you to live and to have a real life so you were just like one of the bunch’; she was the one who would take the needle [that to me looked like a 10d nail ] out of my hand on a school morning when she saw the tears in my eyes while I struggled getting the nerve to shove it in. I didn’t realize, until two months ago, that she was scared silly giving me a shot in the arm.

As for heredity, your kids didn’t need to have any close relative with diabetes - I certainly didn’t. And I didn’t hesitate having children - after making due diligence inquiry; our children now late 40’s and 50’s don’t show signs of diabetes and none of the grandchildren either.


(pamcklein) #29

Hi Ryan (and Jenn),
I know you posted this a while ago, but I just wanted to let you know you are not alone. I was diagnosed a diabetic at the age of 2 1/2. I am now 56 years old with no complications. So, you see, your children can have a long, healthy life even with diabetes! I remember fighting with my parents when it was time for my shots when I was young. I would run and hide and kick and scream. They would have to hold me down, sometimes with the help of my older siblings (I’m the youngest of 4 and the only diabetic in the group!). So, you are not the only ones dealing with this.
I don’t know if you have joined the American Diabetes Association along with JDRF or not, but in their most recent issue of Diabetes Forecast they had their annual review of diabetes products. In it there are several items designed to help lessen the pain and fear of injections for both children and adults. You might find this useful. You can probably find it on the ADA website, or if not call your local chapter and see if you can get a copy of the magazine. I wish they had some of these when I was younger!
As for explaining to your children why they need the shots, I know my parents simply told me that my pancreas (with an explanation that this was an organ in my body and its approximate location) did not make insulin like most people’s and so I had to get insulin in my needle to keep me alive. As I got older they explained more of how insulin works in the body, etc. They kept it simple so I could understand.
I remember explaining it to my friends and how impressed their parents were with my understanding. When I started school I explained to my classmates and as I got older and would go to friend’s houses after school to play I would politely decline the cookies their parents often offered with an explanation as to why I could not have any (keep in mind that in those days no sweets were allowed other than a rare treat). Again, my friend’s parents were always impressed and would let my parents know when they picked me up.
So, I would say that talking to your kids and explaining things at an age appropriate level is key. Even if they are still fighting over the shots, they are listening and gaining the knowledge they need to live a healthy life!
I hope this is helpful to you. Like others have noted, needles today are much smaller and less painful than when I was diagnosed. There are also insulin pumps available now. Your son might be a little young for one of these, but your daughter would probably be able to use one. I have used a pump for the past 4 years (I didn’t trust them and held out). It has freed me from the multiple daily injections (MDI) and I have gotten use to wearing the gear. Still I feel I actually had better control on the MDI. I know of others who feel their control is better with the pump. So, I think it really depends on the person. I don’t know which is better for children. You’d need to speak to your children’s endocrine about that.
Diabetes camp is also a wonderful thing. I did not go to camp until I was 11 yrs old. I wish my parents had been able to send me sooner. At camp, all of the campers and most of the staff are diabetic. It really does help to realize you’re not the only one with this disease. There are now “family camps” as well, where you could both attend with your children. I believe these are just a long weekend, or perhaps a week long. I met someone not long ago whose son was diagnosed at 3 yrs old. She told me that her family had gone and it was great. There were activities for the parents as well as for any siblings and of course for the kids who are diabetic. I believe these camps are all run by the ADA. I would contact them to find out more.
Well, I’ve rambled long enough here. I hope things have calmed down at least a little for you and that your family is falling into a routine with all of this. As others have said, please feel free to come back out here with any questions as they arise - - and I know they will! We are all here to help eachother!

Pam
T1D 53+ yrs and counting!