Do you sometimes feel like you get so focused on keeping your child healthy that your relationship with them is suffering? I wrote this this morning because I was feeling so sad and out of balance with William.
I've always tried to give the boys as much freedom and choice in their lives as possible, while still maintaining some level of order and peace in our family life. The stakes just feel so high with William, but I know that forcing compliance when he's had enough is just going to make it worse for him.
I'm not really looking for answers. I'm just tired and sad, and my heart hurts. I know tomorrow will be better, especially if I can get a good night's sleep.
Thanks for listening, and for being there.
I totally get you. I try really hard to keep my child healthy - balance is lost with other kids. I loved the box thoughts you had. I so relate. I have learned so much about diabetes so much so that I could get my son on the best things and best program to make my son feel as normal as he can. Ah its heart wrenching.
I feel more like a drill sargeant/task master. Don't get me wrong- I am not mean or anything- it just feels that way.
I have felt like I have to make sure a-b-c - ect... are done,then lets cont, on with life. Many times before we are about to go about things,my mind is steady thinking about d stuff.It is there,we try to take care of it-then have fun. Mo,I like your blog,and I think you are one caring and wonderful mom.
Thanks, meme. I'm trying to keep our life as "normal" as possible. Some days are still tough, but we're having more "better" days than not :)
"Tired and sad and my heart hurts". Wow, do I relate. My 16yo daughter was diagnosed last December. Before her illness, we were very close. There wasn't anyone I would rather spend time with and laugh with. We were blessed with an amazing relationship where she shared her feelings, thoughts, opinions , etc with me. Absolutely the delight of my life. Since her diagnosis, I have watched her wilt. She doesn't talk to me. She resents my involvement in her health management. I have a bachelor's in nursing and she now tells me that my credentials of BSN, stands for Blood Sugar Nazi. The nurse in me wants for us to manage her sugar completely by the book. We did pretty good at this for a couple of months. Her A1C came down to 5.3 after three months. She was 13.0 at diagnosis. But she is tired of being a diabetic. I think that she is depressed. Everyday I balance in my mind which is going to be more important, helping her keep her bloodsugar in range, or letting her blow off taking care of herself and not engage in the battle. I am also tired and sad and my heart hurts.
Michelle, BSN, Blood Sugar Nazi
Wow, can I relate! I am a nurse and torn between just being the parent and then nurse in me seeps out! It is just such a challenging disease from every aspect. We try let them just be, but it just isn't so easy. We try because we know what it is like to be a teenager and we knew everything at their age and now they know it all, too!
It is hard not to "motivate" my daughter to care for herself by "educating" her on the ramifications of not taking care of herself. All my depressed daughter needs to hear is that in addition to this relentless responsibility, she could go blind, loose a kidney or leg. But these are the things that scream through my head when I check her monitor and there are no blood sugar values logged since the night before. I want to throttle her and hold her close all at once.
new to the group- actually hunting for a good site that a 15 yo girl teen can get some other teen connections that is not considered by her 'boring' or whatever they call it these days ( I guess lame?) She needs to connect with others . Your post of course caught my eye and I started not to respond cause I can't say anything uplifting about this situation -myself being in it. My Title as a friend tonce called me is her Armoured Guard and that is why she hates me so much. I too am a nurse and I came to realize quickly that is a disadvantage in a lot of ways. The day she was dx slow hot tears just kept streaming down my face and endo said "you are so quiet" I told him I was a nurse and he said " yes the "mom's who are nurses or who have medical background take this dx so hard because you know so much already about the long term". Tt only makes us be the armoured guard even more. My daughter also hates me, resents me and our wonderful realationship is now non exsistent. I too would hate an armoured guard. My daughter feels so different and alienated for the last several years by insentive comment by boys are the car pool telling people she is contaigous or that is so disgusting when you check your bs. She now has a tendancy to try to start the beginnings of the emo look. It is killing me and I am hiding all the black tops . ( She was only doing it a few times a week but now I see she is trying to dress that way more) Depression is definitly an issue with her . ) More to say but I'm sure you have been right there. we tried a counselor but she said she doesn't want to go back. We went on the pump 16 months ago and it was about to kill her so we came off 2-3 months ago. (Absent over 70 days with ketosis) Checked out abut another 40 or more times. Then we got the lot 8 medtronic notice and all that accusing and yelling at her and what she went through was probably not anything she was doing wrong. I couldn't figure it out because i was the armoured guard and made sure was it was getting done correctly. Me and the school nurse . Anyway so now i am ready to sue these people. More stuff to try to deal with.
I am glad that you decided to post. Sounds like we are living similar existances. I wish that Rebecca was able to find some connections as well. I am afraid that I have probably ruined the chance that she will visit Juvenation because she knows that I frequent the site often and just assumes it must be for all the mothers of diabetics that can't stop crying. Our family has dealt with chronic illness for a long time. My son is bipolar. Rebecca has always watched me be the strong one and now I can't hide from her the complete defeat this disease feels like to me. I want to be able to help her manage her health for now and so that she will have good habits when she is on her own. I feel like if she gets sloppy when she is living in a house full of medical personnel and can neglect her health, how will she be when she is at college or moves on to her first home? I can't win. If I try to protect her physical health, I end up harming an already precarious relationship. One that I treasure. If I back off and give her the opportunity to manage this independently, she ends up in ketosis. She says she wants to be trusted and that I don't need to "nag" her but when I take my hands off of it for a time, she really doesn't follow what the endo has told her/us to do. People will tell me not to worry because we will find our middle ground but I am not sure. It feels as if this relationship cannot handle much more conflict.
Becca started her first job this summer as a lifeguard at our local water park. She struggled with where to clip her pump and not feel like, her words, "a complete freakish robot". I told her that I understood that it was going to be something she would have to explain to people but that it wouldn't take long before her coworkers understood what it was and then it wouldn't be any big deal. I gave way to much credit to supervising staff at her job. Everyday she was told to go put her "phone" or "MP3" player away or she would be written up. Not allowed to have pagers. Even people she explained it to would forget and make the same comment the next week. Seriously, give the kid a break. Rebecca lasted five weeks at her new job and decided a job where you had to stand in your swimsuit for hours, was not going to work. Now she is spending her summer hiding in the house, depressed.
We have finally found a counselor Rebecca will return to. It took three tries. Ironically, the counselor that Becca will attend is a cousin of my husbands that he doesn't know very well but learned she had moved to our city. They grew up on opposites sides of the country. I get the feeling Rebecca will talk to her because she thinks of her as family. Hello, I am family!!! Try talking to me!!! Maybe that will come. I mourn the loss of my sweet, trusting, fun loving, giggling, confident baby. I hope she will be back.
I had a patient last week that I think may actually have been an angel. I work in the Recovery Room and her blood pressures were to low to transfer her to her postop room. She ended up being with me for hours, but she was comfortable, stable, but crazy hypotensive. I had been sitting along side her stretcher, watching the monitors, when she opened her eyes and told me this. She said two things. First, our kids may hate us but we love them enough to deal with it. Wow. She hit that one on the nail. Second thing she mumbled was that when our kids are acting out it is rarely because they are intentionally trying to hurt us. They are trying to test out their independence and experience life for themselves, but because they are young and have not seen the consequences of their experiments, they don't know that they can bring negative consequences. It is because we parents (nurses) are on the other side of these experiences that we see their dangers. Much scarier for us than for them. Frustrating as a parent to watch them. One of the revalations I have had is that it makes me angry when Becca doesn't take care of testing or bolusing. I have realized that when she doesn't take care of my most treasured, adored blessing I am angry at her for putting that treasure in jeopardy. Would be nice if they could love themselves in practical ways as much as we love them.
Sorry this is so long. I am told by veterans in this disease that we will overcome this dark hour. That it will get better. I understood your response to "starting not to post because you couldn't offer anything uplifting about the situation". I hope that it helps to know someone understands your feelings. That is what your post did for me. I wish your family best of luck. I am told we will get through this.
Thank you all for being willing to post and talk about your own struggles and doubts. As supportive as my own circle of friends and family is, they don't really understand what it takes EVERY DAY to simply manage this disease in a child. Or how difficult it is to be a good parent AND caretaker, while at the same time struggling through one of the most emotionally painful and difficult times of your own life. Knowing there are other parents "out there" who have and/or are going through the same thing with their children is immensely comforting.
For those with older kids, I wonder if it would help them reach out to others on the Juvenation site if they knew there was one "group" that was reserved only for young adults with T1...no parents allowed. Perhaps reach out to Gina and see if that is a possibility? I know I certainly wouldn't want my own mother reading many of the messages I post to the various groups I belong to, not because I have something to hide, but because I know she and I are operating in different "worlds". I can understand our kids, especially the young adults, wanting the same level of freedom and privacy.
I'm glad this conversation has opened up, even if there are only a handful of us struggling through the same quagmire together :)
First I want to say my heart is with all the moms---Now Mo,I had to laugh when I read what you just said about young adults,and parents.That's why I'm on here hiding ha ! I tried when I first found Juvenation to talk my daughter into looking it over.Nope-no luck with that. So now that we have the 2nd computer in the house,I have been leaving this site on the screen at times.Nope-not making progress....so,in she came in here and I said LOOK at all these young people,they have type1 too! They all share their stories,why won't you take a look sometime.--ok mom,and off she goes-she has company...I still have a few tricks up my sleeve,ha.As for me,I have found this site and the people on it haved helped me more than they will ever know.If my teen ever--comes on here,like I said way back,I plan to exit stage right !!!HA
Mo,me again,I woke up and thought about what you said.I will have to look,but I think there is a group for young adults.Maybe a group could be started for moms of teens and young adults.Teens years can be hard.The teens with type1 are going through all the things teens go throuh-and dealing with type1 in the process.We are their moms and it is hard dealing with their emotions,trying to give them space,and the worry for thier health.Hard stuff...I wonder if you get type1 earlier in life-does it make it any less stressful in the teen years.I only know I cry when I see her stuggle.When she is doing good-my life is brightened.
Ladies - I so agree with all of you. I find myself crying all the time (not in front of Mikey). I feel that being a teen is hard enough (have two other sons, 21 and 19) and this is just one more thing! I agree that even though my support structure is wonderful, they just don't understand?? How can they?
It also appears that as newly dxd families (June 21, 2009), they give you a little information at a time.... I'm not complaining, we are seen by a wonderful team at Children's Hospital in Boston - his endo is also a T1! His DNE is a mother of a T1! So they also speak from their own personal experience.
Mikey is running wicked low these days - the honeymoon period - what a terrible name, in my opinion! He seems to be hungry ALL the time too :( I have been reading everything I can on diabetes. I found this site during the two nights in ICU and I'm so thankful to know that I am not alone as a mother and there are others that affirm my every fear and wish for my child. Let's band together! I don't any of you but I feel like I do!!
My prayers are with each and everyone of you and your beloved children.....off to cry some more and back to wearing a "happy face". Work awaits
Thank you Nancy,you are in my prayers.
You're not alone with the crying thing, and I think that depression can be a normal response to a child's dx. I certainly have been battling depression for the past two months, which makes it more difficult to manage...well, everything else :) Be sure you're getting a breather when you need it, even if it's five minutes in the bathroom, or a hot bath after everyone's in bed. It will get better. Never hesitate to post when you're having a tough time...there's always someone ready to jump in and respond!
If Mikey is running lows consistently or frequently, you may want to talk to your endo about adjusting his insulin/carb ratio. Are you reporting his BG regularly to the endo? Have they been adjusting his ratios, or do they have him on fixed amounts of insulin? Don't be afraid to call and say "this doesn't seem to be working quite right yet". I was faxing BG to our doc every day for a few weeks, then twice a week, and we're now down to once a week. There's be a lot of "tweeking" of numbers, but he's been pretty stable for the past few weeks (whew!). It may take a little while, but you and your team will figure out what works.
wolf wrote something today that reminded me again-of what a poor job I did of wording something here. That is why I wanted to come back and say I am sorry.Having d at any age is hard on the person with type1,and the parents.But the little ones having this has got to be the hardest ever.That's why I cry when I see them on youtube for JDRF.So,I am sorry again if I sounded uncaring,because I do care.
your daughter neads you to be strong for her right now .also first your her mom not her nurce dont make her feel like shes in a hospital 24/7 also remind her shes still the same girl yes she has a little more responsability but still the same .also do get her help if you think shes depressed its comend with kids with medical conditions to feel frustated and hate diabetes .dont force her to be perfect in her blood sugar because i can tell you now it will never happen yes the first few months you might get it right but the same army sargent routine will make your daughter feel pressured and tired were she will end up neglecting her diabetes .also your her mom if you want to cry doit but make sure your daughter wont see you i now your tired scared but the more time passes it will get better just remember diabetes its ment to be managed not to be perfect it will never be perfect ones you get that youl be ok shes got diabetes shes not goin to die sow treat her like you always have dont pressure her in anyway treat her just like you did before but keep a detective eye on her care from far make her feel like you trust her ....good luck
I just joined this site because I have had it, I am so angry, frustrated, sad, etc. I read your comment and realized thru blurry eyes that there are many other parents out there who are in the same spot. I have been the "BSN" (thanks Michelle) for the last 5 years with our 13 year old son. I have finally gotten to the point that I do not know what else to do or try. I am an ICU RN, Certified insulin pump trainer and a future CDE as soon as I take the test. My husband is a PA and we move to Southern Colorado 2 years ago to work in the Rural Health Clinics. We were mortified with the way DM was being treated in this area and the huge lack of knowledge on Diabetes Management, Standards of care and Guidelines. We have been able to help so many people in this area with starting pumps, basal/bolus insulin, education, support, etc. But we are heart broken because we can not reach nor help our own son. After having lunch with a T1 young adult that works for Minimed I decided to stop asking my son and doing it all for him (because he won't). I decided to give my son full responsibility for his DM every day and that we will review it every Sunday on the computer with Carelink. I am having a very hard time not asking him what his bs is and if he wants help with his site change, but for the most part I am surviving. He asked for brownies this am and I told him he has to have a normal bs before he eats them, he said "why, my eye doctor says my eyes are fine right now". I just looked at him and gave him that mom look (bleeding heart) and walked away. We have tried everything to keep him in charge and involved with his DM. I hold on to the fact that I just met a T1 young adult who had a hairy childhood with T1 and is now an adult with no complications and taking great care of herself. I will continue to check my sons bs every am like I have forever but will be faced with taking him off the pump and back on lantus if he continues to not check nor give himself insulin. This is a very small area (800 sq miles and 20,000 people) and i am worried that our son,( Mark and Connie's son) is going to end up in DKA and in the hospital. How can we be so good with our patients but not our own son? I know teenagers have a difficult time with DM, but there has to be someway to stay in control and not drive our kids crazy. My 19 year old daughter just came up to me last month and said "thanks mom for never giving up on me when I was going thru my ETOH and Drug issues in high school"," as crazy as you were, you did save my life and I am glad for that". I hope this is something I will hear from my son also and that he does not turn completely away from his DM management. As a nurse I know what he is doing to his body and that kills me. Thanks for listening, I know that we all get so fatigued of this 24/7 job (keeping our T1 kids alive), and you are right tomorrow will be better.