My Emotions

Parents
1

We are just over 4 months into this whole new diabetic world. My son turned 4 on last Monday (9/28) which was also his 4 month D anniversary. What a wild ride. He is doing great - he's got a great honeymoon going on so I don't know how we are going to feel when he starts to come out of it.

It has been a struggle to deal with all the emotions I have about this disease: grief over losing my child's good health, anger over such a crappy disease, anger at people who tell me to look on the bright side that 'hey he doesn't have cancer', frustration with people who think that "You're handling this all so well" when they have absolutely no idea how I'm not. Frustration with my son that sometimes he just acts like a four year old and has a tantrum or is defiant, and I have to first think "Hey is he low? high?" Sadness to hear other peoples stories of struggles and loss because of diabetes.

Most days I love coming on Juvenation. Some days though, I can't stand it because I feel like I learn about some new complication or future struggle that I feel compelled to worry about. I have usually been such a positive and optimistic person, but since D, I feel like it is really hard to see the good and I just see all the scary monsters that are leaning out on our future. I am working on getting my positve mojo back, but it is hard. I can't think of another time in my life when I've had such 'negative' raw emotions that I have to deal with for such an extended period of time.

What are other people feeling? I would love to hear about others experiences with their emotions following diagnosis or how you deal with them even many years after dx.

2

Dear JDVs mom,

It is a rollercoaster ride with the emotions - sometimes all you can do is hang on.  My son Lucas, was dx right after he turned 3 - it has been 3 1/2 years now.  The first year was the hardest.  I also am the type of person who starts each day and new thing with a smile.  Diabetes in a little guy is really tough though and it is still hard to maintain the positive attitude when you are stressed because he has a cold and his numbers are off - or if the stomach flu is going around (the dread is much worse than the inevitable end of just hanging out in the hospital for the day on an iv).   I find it hard to separate my self worth as a mother from his bg#'s and A1c.   In many ways, I think it would be easier to have the disease than to see him have it - I think the worry and the stress would be less.

All this being said, you know who makes me feel better about the disease?  Lucas.  He is fine and does not let it stop him from doing anything!  His birthday wish when he blows out his candles is not for a cure (like mine is) it is for the same little boy things his brothers wish for on theirs.  When he gets candy from someone he excitedly stashes it in his diabetes bag for his lows.  His friends think his pump is cool and he thinks he is pretty cool too...with diabetes.

So, go ahead and feel sad and worry for him, that's part of the job of a mom right?  But take joy that he won't feel the same burden.

 

Christine

3

I totally understand everything you are feeling.  My son was diagnosed about 4 months before his 4th birthday as well....his 1 year is coming up right before Halloween.  It has been such a rollercoaster of emotions for sure.  Many days I am optimistic...I think my friends' children with food allergies have it much worse.  I feel like we can do this, no big deal.  Then we have days were his numbers just don't make sense.  It is so tiring, so frustrating...and people that don't deal with diabetes have NO clue.  It helps to have other parents of T1 to talk to.  That has been my biggest help...to know I am not alone in this battle.  To know that no matter what you do and how well you do it, diabetes has a mind of it's own and it is not your fault.  All we can do is do the best for our kids so that they can lead as close to normal a life as possible.   Of course, that leaves us counting carbs and making insulin adjustments and trying to decipher if that tantrum is due to a low, a high, or just being 4!  Our lives are changed because of D but they are not over.  It does get easier.  Our son has been on a pump for 6 months now and that has helped with letting him at least eat like a normal 4 year old.  Best of luck!

4

I had to read your post because the truth of the matter is that I have been super emotional about this disease too lately.  Actually, I was holding it in and it is now starting to pour out. 

First, reading your post I can totally relate to what you are saying.  First there are feelings of shock, numbness followed by grief.  Then there is resilience to tackle this disease and not let it get to you- sometimes fear pops up.  After 3 years of my daughter having it, I find myself now going in and out of all of those emotions. 

 Lately, I have had a bit of sadness about it- really too much sadness and trying to hide it from her- She is probably doing better than me!  Actually, it is strange; she has always been really good about testing and being compliant, but lately she has been angry at times and sometimes refuses to test (we make though)  She is 8 years old.   

My daughter is 8 and got it at 5.  I hate it- I really do.

But it is weird because I am reading this post, thinking about it and thinking about my own circumstances and thinking, well I never let diabetes stop me so what am I being so depressed about.  Now, let me say this;  I am 44 and got T1 too at age 17- so I have had type 1 diabetes for 27 years!  and let me tell you this

I have zero complications!

I have three children that I birthed- and did a super job controlling my diabetes while pregnant (yes it was a lot of work- but worth it)

I have had a successful career- top in my position.

I exercise all the time- I never let diabetes stop me.

I have a great husband.

I am rarely sick.

I am not one to brag, but had to take a step back and when I read your post- thought- I never let diabetes stop me from doing what I wanted to do- whether it be going to college, having kids, a career-  Diabetes NEVER once stopped me from pursuing my dreams.

So why have I been so emotional?????? I guess I have been letting it get to me.  Yes, I feel crappy sometimes and I have always had to work through it like going to work when I had been ketoning and feeling like I had the biggest hangover ever when I didn't even drink anything- all the while working through it and not letting on to my co-workers because admitting it or dwelling on it would be giving in to this disease.

But truthfully, it is soooo much harder to see your little ones suffer with it.  That is what has been getting to me, plus truthfully, I have been compromising on my care a little bit because after taking her bloodsugar about 9-10 times aday- I am so tired of taking sugars I might skip mine (ok that is my excuse).

But the truth is as I can testify it is harder to see your kids have it than having it myself.  

Diabetes doesn't scare me when I think about it for myself because I know how to live with it, but then why do I get so worried and scared about my daughter???  I guess it is amazing how thinking about all the "What ifs" can wreak havoc on your mind.

I guess the encouraging thing I can tell you is that I know I have lead a great healthy life thus far (I didn't say it wasn't easy and a lot of work!!) so I know diabetes is not the end all!!- but worrying about our kids- well, I have some work to do. 

Laura

5

You can't discount your emotions. The feelings of loss are real, they're sharp and they affect everything.

Our daughter's diagnosis of diabetes marked the death of her perfect health. A diagnosis of T1 diabetes warrants mourning. Bottling it up for another day just makes it percolate and bubble over unexpectedly at a later time. Let yourself mourn, and allow yourself to heal.

Unfortunately, as parents, we don't have the luxury of denial- we need to treat our kids' ugly disease right away and keep working through the sad news. We need to stay hopeful and proactive not only for our sake, but for theirs. We need to lead them by example and to show them the proper way to live with a chronic disease. Our outlook keeps getting better. We sometimes need to put on the blinders with future complications and focus on the positive steps we can make today.

Being positive takes work. This is what I wrote about in my blog about it: http://parentsguidetodiabetes.blogspot.com/2009/09/being-positive-takes-work.html

I hope this helps.

6

When I read these above-my heart breaks and I cry-our children are meant to live carefree lives-D is a burden-heavy on the emotions.I come to Juvenation almost daily--my spirits are lifted by the members here.I find hope and am encouraged for the future of my daughter and everyone here.I am thankful once again for Juvenation for all of us.

7

My son is four and was diagnosed ten months ago.  I too ride the emotional roller coaster daily or more.   I long for him to do things just like his classmates instead of leaving the room to be tested or eat carrots instead of what they are all eating for snack. 

Truly, the one thing that has helped me most was a chance meeting of another mother whose son was diagnosed just before mine.  We have found it invaluable to talk to someone who truly "gets it".  My family and other friends try to understand but until you go through it day in and day out you just cant' truly understand.

I also typically don't read things that are about "scary complications".  I don't have my head in the sand, I know they are out there but I am doing everything I can to prevent them and that is all I can do.

Hang in there and remember you are not alone!

 

Brenda

8

I read this will heartfelt emotions, you truly hit everything My husband and I have been feeling! We are just shy of our 4 month D anniversary.  It has been a roller coaster ride and so many emotions.  I am so blessed to have you all who really understand, because no matter what unless you live it you don't get it.

 My favorite line from well meaning people is "Oh well thank goodness his mom is a nurse."  I am a Mom and he is my baby, not my patient.  I know they mean well but this is a relentless disease that doesn't give you any time off!

Thank you to my support family!  You all make it easier.

9

It's unfair to call diabetes an emotional rollercoaster without mentioning the highs that go with it.

It has been so uplifting to encounter so many caring individuals - strangers and friends- who have reached out to our family over the years to lend their support. One of the most moving moments of our diabetes life was at our first JDRF Walk to Cure Diabetes event. There were thousands there to raise money for a cure  and to show that they care. Cassie looked up at me when she saw the crowd and asked, "Daddy, are they all here for me?"

Needless to say, we haven't missed a walk since.

10

We are 6 months post-diagnosis and I am doing far better than I was those first few weeks, but I still break down probably once every couple weeks. There are little things that hit you -- like telling her volunteer dad volleyball coach about her having Type 1 and him getting that "deer in the headlights" look on his face. And there are big things -- like the comment on Grey's Anatomy the other night about treating someone's diabetic ulcer on their leg and Maya looking at me and asking what an ulcer is. But no matter what is going on, this diagnosis never goes away. And it kinda sucks! That being said, there are definitely bright moments and I appreciate so much the positive ways it has changed both my children and their compassion for other people. And the way it has motivated Maya about there being a cure someday. And the bravery I see in her EVERY single day -- that I'm not sure she would have ever found otherwise.

Grief abounds though... I hope it hurts a little less as time goes on, but I am certain it will stick around in some form. YOUR FEELINGS ARE NORMAL!

11

Wow, you really hit the nail on the head for me with this post--everything you are going through right now--I went through a year and a half ago when my son was diagnosed at 4.5 years old.  And you really put it so eloquently... I really wish none of these wonderful, innocent children should have to go through this--but as I have told myself time and time again...It is what it is and we just have to take care of our child to the best of our ability and life goes on....

 

I know it sounds cliche already, but it does get easier...You just fall into a new "norm" and then you wont even remember what it was like pre dx--sad to say... 

 

Lets just hope and pray for a miracle and a cure--boy do these kids and their parents need a break!!!

12

Cool!! We are going to walk on Oct 25th for the first time and my son is really looking foward to it b/c he wants to meet other kids with diabetes(I guess he kinda feels all alone right now)

13

I am brand new to juvenation and had to reply to this post- we are 9 months post diagnosis and it really hit home.  My Murphy was diagnosed at 16 months old the day after being diagnosed with multiple ear infections.  He went into severe DKA and spent two nights in PICU it was the worst week of my life hands down and I have been  through a lot in my 32 years.  I keep hoping to snap out of it and I still fear that it hasn't sunk in yet even after this long. 

On the other hand I do feel truly blessed I have four amazing children a warm home, a great husband and a crazy dog who all love me- but I just sometimes look into his big brown eyes and am overwhelmed with sadness.  I wish that I could take the five shots a day and the endless finger pokes.

My only distraction from being sad is to tackle it head on and do the best that I possibly can to manage it and to teach him to manage it and be a healthy happy little boy.I guess thats really all I can ask for.  My question to those who replied-Will is numbers ever be more predictable?  I feed him healthy meals and snacks monitor his bs constantly but he still seems to be all over the place after 9 months- what am i doing wrong?  He still has daytime highs and scary nightime lows-

Thanks,

Monica

 

14

Monica,

 

I am sorry for your Murphy - poor little guy to be dx so young.  Lucas was 37 mo...he is 6 1/2 yrs  now.

I am also sorry to say that you are doing nothing wrong.  I hate to say when I check his sugars at 9:30pm I have no idea whether he will be 42, 108 or 324.   It could be a simple 1/3 cup rice with veggie and lean chicken dinner that I feed him a couple x a week and one day he could be low and the next high.  The stress does get better though.  Your heart does not race as fast when you see the 300 and you do not feel quite as much overwhelming guilt when you see the 40.  I just check him every couple of hours so he does not run too high or too low for very long.  Our endo says the ups and downs are typ. for little guys and some level out eventually and others do not.

Keep doing your best - Murphy is lucky to have a mother that will give him that.

 

Christine

15

Monica - you aren't doing anything wrong - you are doing great!

A couple ideas to ask your endo about regarding his numbers - if he is on Levemir/Lantus 1x/day - could it be split to a morning and evening dose? (This could be a possible way to help the night time lows).  Also, I have read that when kids are doing a lot of growing, that numbers are really unpredictable and that is why you just keep checking and correcting. - There are no bad numbers - the numbers just tell you what you need to do next. 

16

My 7 year old daughter, Jessica, was just diagnosed last Wednesday.  Your feelings mirror so many of my own.  The loss, the devastation, the anger, the fear.  Already Jessica has become my strength and hero.  It is nice to have a place to come and see others have been through this too.  I, too, am sick of all the insensitive comments people don't realize they say.  I know they mean well, and yes, cancer is worse.  But, type 1 diabetes still stinks.  I, too, have always been a hopeful, optimistic person, and hope that I am again soon.

17

You will be again soon. It's been 6 months now since my now 10-year-old daughter was diagnosed and i still fee like I'm on a rollercoaster, but there are more good days than bad days. We just went to pump class yesterday and she got home and plopped the sample OmniPod on her like she owned the world. When she got ready to go to school todayk, she put on a short-sleeved tee-shirt with the plastic pod on the back of her right arm. I told her there would be a million questions. She smiled at me and said, "I know... that's why I wore short sleeves!" They are really amazing. And it makes all the ignorant comments and crazy suggestions seem that much less important.

p.s. the technology of the pumps is INCREDIBLE! Seems like if they can get this far, they will certainly be able to find a cure someday... keep the faith.

 

18

The three months after our son's diagnosis (5/13/09) were probably the worst of my life.  I suffered severe depression, my heart was breaking, and some days I felt like I could barely function well enough to care for our son, much less the rest of our family.  Some days I just cried as I went about my daily tasks.  But, I knew that the acute pain and distress had to work itself out before I could get better, and stronger.  And I have.  A book that really helped me (I actually listed to the audiobook while I did housework) was "Dark Nights of the Soul" by Thomas Moore.  It helped me relax and let the grieving process play out, while assuring me that my "dark night" would pass in time, and that, if I did it in a concious manner, I would come out the other side being closer to the person I was meant to be.  There are still really bad days, and really bad moments, but I'm through the worst of it, and moving forward.

As silly as it sounds, another thing that really helped me was blogging.  I focus on the "normal" and "good" parts of our family life, and of William's progress.  It's not that I am denying the bad parts, but that I am using our family blog as a tool to actively LOOK FOR and report on the positive stuff.  As others have said, it is a rollercoaster, and I'm making efforts to acknowledge and commemorate the highs.  I gotta tell ya, I just about turned cartwheels in the endo's office when William's first A1c came back 6.5; I was high for days after that, and THAT is worth sharing with the world (okay, just the nine or so people who read my blog :)  When I am hitting a low, I reach out privately to friends who know and understand what I'm dealing with.  The rest of the time, we all go about our business.  And, as tiny and insignificant as my blog is, it has proven to be a good tool for educating others, giving them a glimpse into the daily lives of families living with T1 that they would not otherwise have.

It has also helped me to adjust my expectations about managing William's BS (this, coming from a recovering perfectionist).  If his BS is in his "target range" 70-80% of the time, that is GOOD control.  That is WAAAAAY better than the control that was possible only ten years ago, and way better than the control achieved by adult diabetics on less tightly managed programs (my MIL and neighbor are both T2 and have a terrible time with BS control).  In my T1 class, they emphasized that "tight control" exponentially decreases the incidence of complications, and control for our kids is far more do-able than it has been in the past. 

I know much of this may sound as though I'm trying to bury the difficult emotions and take a Pollyanna approach, only focusing on the positive.  But I really am not.  It has taken a lot of HARD work for me to dig through, process, and move out of one of the darkest times of my life.  But, I did it., and continue to do it every day.  And you all can do it too.  I knew that the longer I allowed myself to dwell in the darkness, the more precious time with my son I was losing.  I had to get back on my feet so we, as a family, could move forward into normalcy again.  We still have struggles and difficulties, but the stronger I am, the better it is for everyone else, including me.

I really encourage anyone who is struggling to reach out for help.  If you are having difficulty managing daily, if you are suffering deep depression and difficulty adjusting, please contact your endo and get a referral for counseling or other services by folks who have experience helping families through this.  If you need medication to help get severe depression under control, please get it.  If you need someone to wail at for an hour each week, please find that someone.  At the very least, please be sure you've got a couple of strong, understanding friends you can turn to when you need a little support, and CALL THEM.  PLEASE do not try to do this on your own.

Blessings,

Mo