How do you deal with the emotional toll Diabetes takes on you?

[Meadow]

I am a mom to a 23 month old little boy with diabetes. He was diagnosed with type 1 diabetes 6 months ago.

My husband and I are really having a hard time dealing with this disease. Because our son is a toddler, and unpredictable with his eating and activity patterns, he frequently goes through lows/highs. We feel that diabetes has taken over our lives. I feel that I can't sleep, as I am worried about my son going in to a low (he tends to drop fast, so even if I check at night, it is no guarantee that within a half hour he will be fine).

How do you deal with the emotional/physical toll that this disease places on you?

I am feeling so hopeless right now.

Anyone else have any experiences that they would like to share.

[Red (aus)]

Hi
I'm not sure that I can say much about dealing with the pressure of d, I guess it's something we just do, go with the flow and hope it all works out in the end.
What I can say though is that what you are feeling is so very very normal. Many families struggle under the extra weight placed on their relationships by d, many parents feel hopeless and helpless, and this feeling can be made worse when the children are quite young. Diabetes is a huge responsibility for anyone, but when you have a child of 23 months that responsibility can be daunting and overwhelming.

One important thing for your husband and yourself is to try to make some 'US' time.
My husband and I made some specific "US" times. We would have a half hour each afternoon where we could vent to each other about d, how we felt, what had happened, or not happened etc. Once that was done we were generally able to put a lot of that day's issues behind us and move on. Then a bit later on, once the kids were in bed, we made another time of varying lengths where we talked about ourselves without bringing d into the conversation. We talked about our friends and things we had done or wanted to do, funny things we'd read etc. Anything, so long as it didn't involve d in any way.

I also made times with my friends like this, we made times when we couldn't moan about anything, positive times where we just laughed. These times didn't have to be long periods, but enough to recharge the batteries.
As time went on, we learned more about diabetes, Taylor learned more about her body and we were able to relax a little, and those sessions have now all but gone by the wayside. Now we make full days or evenings every month or two for our time out.

Do know, that your feelings right now are normal. Also know that those feelings will change with time. I can't say that diabetes gets easier, but I can say that as we learn more about it, we learn to deal with it a little better and this helps our coping skills.

Your son has been dxd for 6 months now. Try thinking back to when he was dxd and how you felt then. Then look at how things are now. Have your thoughts and feelings changed much? I would be willing to bet that they have, although in the hustle and bustle of day to day life it's very difficult to see or feel those changes.

I read a study once that showed that parents of children dxd with diabetes before 5 yo often took a full 12 months before they started to feel somewhat in control of their lives again. This 12 months increased as the childrens ages decreased, so it could be another 6 or 12 months before you feel somewhat normal, so it's important for now to look at the small changes and small improvements. Finding one small improvement helps to keep us going from one small thing to another to another and soon the time has passed and all of those small improvements add up to something big and great.
Another tool that you could use is a journal either on paper at home for you personally, or even an online one to share your thoughts and feelings with others. Journals can help us reflect on where we were at a set point in time and be able to easily see the changes between then and now. Being able to visibly see these changes is generally a positive experience.
I'll stop there as I feel this is turning into a novel and I don't think you need that right now:)

[hartpukas]

Oh, Meadow, I feel what you are saying! Our daughter is 15 months old and was just diagnosed in August 2005. It is crazy how much our lives have changed since the diagnosis. However, after being in the hospital because she went into diabetic ketoacidosis and was in the icu for four days – we had a strange sense of security knowing that has much has the diagnosis stunk we were given something that, as a family, we could manage and hope to deal with.

Well, that is how we felt in the hospital when we were sent home to take care of her a whole other group of feelings set in. I truly went through a grieving process – depression, grief, loss, anger, etc… My husband put it best when he said he felt like the “innocence” of being new parents had been taken away from us. And then I was feeling so envious of other parents that could just up and go with a diaper bag and their baby in their arms, feeding their babies has they pleased with no concern of the number of carbs. The diabetes bag that I was first toting around was a hospital issued backpack that was bigger that my diaper bag, ugh!

Things have definitely improved – my diabetes bag has even graduated to a rather cute looking purple flower diabetes travel kit that fits conveniently inside my diaper bag (I found it online at a diabetes store)! Yet we struggle, daily – not so much every day but sometimes it seems like it. The range of her highs and lows is scary as it sounds like your son’s is as well. I often long to hear the ranges of other type 1 youngsters to make myself know that it is so hard to manage/ control the levels at their precious age.

I look to this board for ideas, inspiration and encouragement from other more experienced parents and still find serenity in reading posts like yours knowing that I am not alone. I hope that things continue to evolve for those of us that are new to type 1 diabetes and that we can, somehow, retain our senses about us as we struggle to take care of our dear sweet children. Good luck as I know what you are going through and keep the faith that each day offers.

[Meadow]

Thank you so much ladies for your kind and heartfelt words. It is so nice to be validated by other parents. This disease seems to be very isolating, so it is comforting to know that other families are going through the same things.

I am sure that in time things will seem easier, and as my son grows he will be able to tell us when he going in to a low, or not feeling well...and we can reason with him, which I am sure is a key thing when dealing with the eating.

Right now I am in a difficult place, but hopefully with time things will seem easier.

My thoughts and prayers are with all our lovely children and parents dealing with this disease.

[mischloss]

Hi Meadow,

My son although 10 was diagnosed in Sept and we as parents are all scared to death about living up to taking care of a diabetic child, day in and day out. It has been a very stressful period in our lives as a couple and as parents. And yes, nothing will be the same again. But with that said, your child will be growing up during a time that medical advancement for this disease is estounding and happening at a quick rate. I was just commenting that in the 3 months or so of diagnosis, I have already seen new instruments and devices coming out on the market.

The highs and lows of toddlers are (as I have been told) quiet normal, if you can believe it. There is a 2 year old at our son's daycare with Type 1 and the daycare givers give him his shots and check his BG. He is doing great and most toddlers don't even notice that much of a change. In a way, emotionally it is much easier for them to adapt to this new lifestyle than for the parents. They won't know any better as they get older. My son being 10 when diagnosed had plenty of time being a "normal" kid eating what he wanted not dealing with anything medical and along with dealing with our grieving and stress, we had to be "upbeat" in front of him and try to minimize our depression since he himself was going through now "being different" than the other kids in his class and his age.

As far as all the stuff you have to lug around. I had to buy a bigger "tote" bag for his monitor and insulin pen needle to take along everywhere, along with snacks and drinks. Yes, it does feel like I am packing for a baby again. Gone are the days when I could just use a nice small shoulder bag. And with boys it's harder, since they won't ever have a purse to put their stuff in.

Another thing down the rode you might consider for your toddler's BG levels is to put them on an insulin pump. I am sure your endo will inform you when it is the right time for this. But in reading these boards, I have seen a lot of BG's be in stricter control when children are on the pump. Again with your son's age though there could be issues with him being too active and the fear of it being dis-lodged. But I wish you well. We are all in the same boat and can totally relate to your stressing. Don't be afraid to vent on this forum, there is always someone to jump in and give you advise and a "cyber hug." : )

[nantomsuethom]

Our son was diagnosed a little more than 2 years ago. It was very diff. for all of us. I have quite a few gray hairs from the constant worry of his going low at night. I know it has to be way harder with a toddler! I bought a baby monitor for his room shortly after he was diagnosed.

Just as Red said the more you learn the easier it is to deal with it.
When Thomas was first diagnosed I was determined to get his bgs in normal range and keep them there. I/we don't even stress about it now unless they are consistently above 200. We allow him to have and do whatever his friends have and do. If there is a birthday party or a game he wants to go to we don't stress about it anymore, we just fix things when he comes home.

He has learned to do everything for himself now. He has been on a pump for 2 years. He started pumping after 3 months.

Do you know other parents that have children with d? I am fortunate (if you can call it that) to have 2 friends (parents of 2 kindergarten students) to talk to. We sit and talk almost every morning at school. It's hard to talk to other friends about it, they just don't understand.

Try to keep your chin up. Though it may not seem so, there is a light at the end of the tunnel.

Enjoy the holiday season.

[Mik's Mom]

My daughter was diagnosed 6 months ago. She is 7 years old and I totaly understand how you feel. No matter what age your child is when they are diagnosed, life as you knew it is gone and you are faced with a whole knew challange of living and coping with diabetes. I'd like to say it gets easier, but it dosen't really, at least not yet.. It dose become less frightening the more you learn and understand and it does get easier to cope with..but easier, I'm not to that point yet. What you are feeling is very normal and understandable.

[ann-lolly]

You may want to also check with your family doctor and tell them what is going on and maybe they can help you with an rx for you to cope with everything. My daughter is actually very newly diagnosed but I think that is helping me. Also, these websites and educating yourself, helps a bit....not to mention a big support from yourfamily andfriends. everyone around us is so helpful,,,even doing the smallest thing, makes them feel better and leave me and my husband more focused on my daughter. Good luck.

[E~Chic]

I completely understand you, and it is very difficult with a baby, cause babies do not always want to eat. I too, have a really hard time with this, my sleep time is hindered too, my daughter was just diagnosed 4 months ago. She is 10 years old, she is really dependent on me all the time, I know this must be so hard for you. Well if you ever need to just scream or cry or laugh, just know you are not alone. :o

[bbdebs]

My 13 month old son has been diagnosed for 2 months and I'm finding it very difficult practically and emotionally.
I have 2 older children aged 5 and 3 so I was a confident, experienced mum but diabetes is very tough to adjust to. I feel and act just like I did when I brought my first child home from the hospital. I'm not sure of what I'm doing and I don't go out alone with Tom unless I really have to!
It is getting better but slowly. I can now 'forget' about diabetes for an hour whereas for the first weeks it was on my mind constantly. I've worked out the times and routine to avoid most hypos and I don't panic when he has a hypo now. I still avoid going out alone for any length of time between 10am and 2pm as this is Tom's main hypo time (nph is awful) but I'm allowing myself to gain confidence slowly.
Tom was in DKA on admission but not noticeably ill beforehand so it was an immense shock. We have no other diabetics in the family so it's been a huge learning process. I'm not being tough on myself and I'm getting used to asking for and accepting help from family and friends. I've found other parents on this site a great source of advice and support too.

[Dreamweaver]

I just got done reading all of your posting’s. I can’t begin to explain how I feel, but it does help me have a better insight to my daughter and what is going on in her head. I am not a diabetic, I will never know what it is like. I know that it is terrible, I know that it is life altering, I know it is a Royal Pain In The Ass. But I only know this from living with my daughter, she has been diabetic for 13 years. I also know how dangerous it is, I know it can kill. Does anyone out there know a “succesful diabetic”? If so, how do you do it? What is the turning point? How can I help my daughter? It is very painful being a diabetic, it is also very painful being a parent and watching your child slowly destory themselves. I cannot be a diabetic for her, if I could, I would in a heart beat. I do not want to outlive my child, I do not want to see her suffer in the years to come. But what can I do, I have done all I know how over the last 7 years, but in reality, I know it has to be her who makes the decision to take care og herself. I just feel so helpless, a Mother is supposed to protect her child, keep them healthy and safe. I can do neither, I just sit and watch it happen day after day. I know how hard it is for her, I really do. The pricking the finger, checking the keytones, no sugar, no pop, no cake, no candy, always having the insulin pump attached to her like a leach, knowing that she is f’ing up her organs but not knowing how to stop herself. I know she just wants to lead a normal life and be like a regular person, like all her friends. I know how badly she wants to be a good diabetic, with all her heart. I know how terribly impossible it is for her to be a good diabetic and how damn frustrated she is with herself for being a bad one. I have seen all the **** she has gone through in her many hospital visits with DKA, her highs her lows, her puking her pain. But still…....she is my child…..I love her so much….she is killing herself. What am I to do?? Thanks for listening…it helps to get it out. I searched for a sight of Parents of Diabetic Children, but could not find one. So thanks for letting me vent. God Bless You All.

[Jana]

Hi Meadow,

My two-year-old was just dx'd 7 months ago. He has terrible highs and lows no matter what we do, and my husband and I are still having a hard time coping with things as well. We're actually getting ready to start him on the pump soon because we just can't handle the extra stress of extreme numbers and unpredictability. I'm constantly scared and worried about our son's health and safety, and I always feel like I'm being graded on how well I take care of him...even though his endo team has been incredibly supportive. I think it's just going to take more time, but I also think everything I'm thinking and feeling is normal...and you seem to be reacting normal too. Who wants to have a child with health problems? It's hard...and it's time consuming...and it changes every aspect of your life. Just hang in there and keep talking to people. Feel free to email me anytime...to talk...or just to vent.