Too sad tonight

So we're six months into this.  The new normal is normal now.  But tonight I'm just sooo sad and crying.  My whole family has been away today and won't be back for another hour.  I feel like I have such a short amount of time to get myself together.  How do I make my eyes not red?  I'm okay.  I just want to hear from some other parents.  I feel stupid in some ways for feeling this way when my son is 15 and so many of you are parents of little ones with this disease.

I think I just don't have enough time to myself.  Today TODAY I finally cleaned up piles of stuff that has accumulated in my bedroom since the day before my son got sick six months ago.  He and I had just returned from a trip to Rome with other Latin students over spring break.  We'd been back 24 hours when he violently got sick.  I'm wondering if I'll ever be able to look at the receipts in Italian or other keepsakes without feeling sick in my heart.  And then all the diabetes literature we got in the hospital.  The useful stuff I've used.  The non-useful stuff (material too young for my son, for example) just piled on top of the stuff from Rome.

So my son was off in one direction today and my husband and other son off in another.  I was glad for the time alone and I got a lot done.  Maybe I knew I needed to be alone to get this stuff cleaned up.  But now, I feel like my heart is broken all over again.

My son is great.  He's never been the most organized kid in the world and that carries over to all his diabetes junk.  But he takes care of himself.  I think he stresses more about schoolwork than he does about diabetes.  He's blessed to be one of those people who doesn't worry too much and is generally happy.  He was like that before diabetes, and diabetes hasn't changed that.  I wish I was like that.

What is my point?  I don't go around crying on a regular basis.  I think the last time I can remember being really upset was July 4th--the first time he was gone a whole day with friends and really screwed up his numbers.  We texted and talked on the cell so many times that night, because he was spending the night with a friend but was had a low low followed by highs that wouldn't stop.  This morning when I dropped him off at school to meet up with some friends, he asked if he should call for any highs or lows.  I told him only if it was something he didn't feel he could handle.  So we've texted several times tonight----about college football scores that he wanted to know!  And I did doublecheck that he'd done his Lantus because he's out so late and usually does that at home.  So life is good.  And I'm still crying that he's got this stupid disease!!

I think I just spend so much time dealing with life and the day-to-day that I haven't finished emotionally dealing with the diagnosis.  When will I be done?  I was hoping that a clean room would be a clean start.  And instead I'm just falling apart.

Okay, 50 minutes till I have to go pick him up.  Guess I should go find a distraction.

My son was diagnosed 2 1/2 years ago and I still cry for him sometimes when I'm alone, which is usually bedtime. Brandan is only 3, but I know that I will always be sad for him no matter what age he is. It usually happens to me when he's having one of those days when I can't keep his sugar in range or I feel his diabetes is interrupting something or especially when he is sick. It takes all my inner strength to hold back my sadness until he goes to bed. He doesn't get sad because of his disease, but he gets sad when mama is.


I don't yet know what it feels like to have him run off with friends or to leave him at school, but it seems that you and your son have a close relationship and that he communicates with you and that is a very good thing.


I get stressed because I never actually have time off from managing his diabetes. My husband and my mom are the only 2 people I can leave him with because nobody else is willing to give him insulin. When he is with one of them I still don't get a break because they have to call me so I can tell them how much insulin to give him, etc. But, Brandan doesn't get a break from it EVER so I don't feel sorry for myself at all. To be completely honest, if they didn't have to call me, I would still call them to check on everything. I wish he could spend a day with his aunt and uncle or with a playmate's parents, but he can't and it's not his fault and my heart breaks everytime I have to tell him no.

You see? We all have those days, those moments. We're human, we're parents. It's how we deal with these moments that matters and it seems that you are doing just fine. :)

Hi Angie,

Sometimes we get so busy with the day to day management of life with diabetes, we don't have time to become fully overwhelmed by the sheer magnitude of everything until we hava few quiet moments to finally let it sink in. But I can tell from your post that you're addressing everything that you and your son CAN control. That's the best thing you can do, and all those little busy day things to keep him in normal BG ranges pays off in a very big way by staving off long term complications.

Stay busy, stay positive and know that there are others here on juvenation that share your worries. Together we can all push for the best possible lives for our kids --- and keep pushing for a cure.

Maybe there's something "special" about the 6-month mark. I'm 6 months in with my 10-year-old daughter and for some reason, I had a really rough time of it a couple weeks back. This site usually helps me (as long as I don't read about some of the teenagers and young adults who are having a difficult time managing). And it helps to cry... I really believe that. Our kids have lost some innocence, some freedom, and some of their childhood. Our educator the other day made a great comment though -- we are doing pump trials to see if and what pump she might like to use. The infusion set was scary, but she pushed through her fear (like with the initial testing and shots) and ended up with a smile on her face. The educator pointed out that our kids have something that other kids will take years to develop -- they find their own coping skills, they find a mental toughness, and they figure out how to deal with the stuff that "sucks" in a way that can still keep them healthy and happy. They are AMAZING kids! And we are lucky to have them.

Hang in there. I think the rollercoaster will never actually be over, we will just become more accustomed to it -- and we will find our own new coping strategies too.

Good luck!

Our son was dianosed two-and-a-half years ago, when he was 5.  We still have crying nights too (why is it always at night?), but they are much less frequent than they used to be.  We can't offer any better advice than the good words others have already posted, but please know you and your family aren't alone.  It sounds like you and your son are doing everything right.

Angie,

When I read your post it broke my heart.  I can understand why the keepsakes from Rome would bring up such sad memories.  However, your son is going to be okay, and so are you.  There are still times I break into tears and ask why us???  However, there are days that I just look at my daughter and KNOW why us!!  The other day we were talking (she is 6) and I told her how she is different from the rest of us but that just makes her super special.  She looked at me and said she wished I had diabetes like her so that we could be the same.  I told her that I wished I could take hers away so that she could be like the rest of us.  She told me "Mom, I don't mind having diabetes.  It's not so bad."  That is why God chose her.  Because "it's not so bad"

Your son is young and has a long future ahead of him.  You are a great mom who obviously loves her son very much!  One day you will look at those Rome keepsakes and be able to smile about your trip.  Until then, hold them tight and cry when you need to.  We all still do it!

Angie - I've probably read your post everyday this week and I keep wanting to reply but knew that I would not be able to keep from crying while I wrote a response. I decided I had to reply anyway because that is what we do here - support each other.

I can only share some of what I have learned in the 5 months since John was diagnosed. As I look back, I have a lot of pride for the growth I have made as a mother and as a person. I would not be the same person if we had not received this diagnosis. I have learned that is part of life to become stronger in the broken places after a loss. It is part of healing. There will always be feelings of loss and sadness, but as others have written, I have come to understand that it is part of the new D normal to cry now and then. Some days or weeks will have lots of crying and pain and others will have none. But I am stronger than I was.

I have learned there are no stupid feelings. There are just feelings. Our culture has ingrained in us that we should not share 'negative' feelings: sadness, anger, grief. Somehow we are to just bury these and get on with life. I have learned this is not healthy! You need to share these feelings and it is also OK to be sad in front of your kids. How will they learn to deal with these feelings if they never see their parents deal with them? Avoiding them does not make them go away. It is hard as hell to deal with them, but in the end, you become stronger for dealing with them and better equipped for the next challenge that life will throw your way. (I'm not advocating dumping all your feelings out on your kids, just saying it is OK to have 'red eyes' in front of them and be honest if they notice them.)

I understand about looking at mementos from right before diagnosis. That must have been hard. I have a photo of John taken 5 days before his dx that makes me want to cry everytime I look at it. It is of him with a big rock bass that he caught with help from his grandpa - it is one of those 'idyllic' moments that you'd put in the mental slideshow of his life. However, he looks terrible - eyes sunken and dark, super thin, and with a smile, but a certain sadness in his eyes. It was because he was so sick, but I didn't know. How I could have looked at him and not said, "Something is terribly wrong." is still beyond me. I remember how I was so frustrated with John for all the accidents he had that weekend, and wondering why he was so thirsty. Someone in my family even said, "Do you think he could have diabetes?" to which we all agreed, "No, of course not." And then it still took us 3 more days before we took him to the doctor. Knowing what I know now, that was incredibly ignorant and dangerous, but I have had to forgive myself that I didn't know. THat is hard and still something I struggle with. I can't take that photo off my fridge yet. It is not fun to look at but it is still teaching me.

Make sure you do take time for yourself, both to be sad and heal, and to be joyful and have fun. You will be stronger at the broken places too.

We all love our children - we will always cry for the diagnosis they recieved.

I cry when I think of him having to deal with this for the rest of his life - he misses the spontaneity and ease he had.

I cry when I think of the damage it must have done to his body and how I should have caught it sooner.

I cry because no matter how much I love him and help him I can never make this go away.

I cry because I am scared that he will meet all those awful side effects as he gets older.

 

We have been in this diabetes diagnosis for less than three months but I know that I will never lose these emotions - I just have to deal with them as they come. Thank you to all who have shared - I don't feel so alone. I am not happy you all have these feelings too but it is nice to know others understand.

how ironic that i read your post tonight since tonight is my too sad night.  my daughter was diagnosed in 8/21/09.  we put her to bed tonight after she stopped crying cause she doesnt want to get shots anymore and after me telling again that she will have to get them for the rest of her life. i hate this. i cant take it away from her. there's nothing i do.  why her?  she's been dealing with this pretty damn well.  giving herself shots and everything.  just the last couple of days she started getting upset. i am so pissed off that she's sick. but who can i get mad at?  its not fair, she's such a good kid. why didnt god give it to me instead.   

I am so glad I found this site. My 9 yr old daughter was diagnosed just a few weeks ago (11/2/09).  I'm a mess. I have been keeping myself together in front of her but have lost it a few times, mostly at the hospital during the diagnosis.  Moms are supposed to fix everything!  Angie, I can't imagine this getting any easier.  I can't concentrate with so many thoughts running through my head.  I guess as parents we will always feel the guilt, the hurt and the pain for what our children have to deal with every day. Although I have no words to comfort you, I thank you and others for sharing your stories. I'm falling apart, too!

Two weeks out is such a hard time.  Our son has had it for 2 1/2 years now.  He is eight.  I can certainly remember the feelings upon just getting home: overwhelmed, tired, worried, sick.  What I remember most, though (and what has changed most) is the feeling that we were labelling our son as "a diabetic."  Even though we were telling him that he was our boy above everything else -- and not the disease -- that was all we could think about.  I can't say that has completely gone away (especially when we have to rearrange our schedules to make sure he gets an extra shot, or have to give him some supervision at a birthday party, etc., etc.), but I hardly ever think of him as "a diabetic" anymore.  Those spots are filled again with his wonderful sense of humor, his unique talents, and above all my amazement at the courage I didn't even know he had.  We have stinky days...he does too.  Especially the blood draws...that reminds him of the vulnerability and lack of control he experienced during the hospitalization.  But we have our son back.  He has diabetes...but he also has red hair, freckles, an infectious giggle, a wisecracking sense of humor, a keen musical sense, and good friends who watch out for him.  It is so hard to see right now, but the best piece of "wisdom" we can offer is this...you will see your daughter apart from the illness someday.  One day you'll realize it's been five whole minutes since you thought about the d-word, and you'll be okay with that.  I wish you peace in the coming days/weeks/months ahead. 

Angie,I use to do this a lot--I would try to be all smiles and be up the best I could.....then when I was alone,I would cry so hard.Then I would have to pull it together the best I could-she would be home soon---never wanted her to see the mess I was in.This was not about me......get myself together-together. I wanted to go back in time and just live there-before diabetes.Everything was defined before and after d.Before she could be free-now my strong willed free spirited child had been given a life of restrictions.She was the hot spot of gossip at school--by parents.Some who were bold enough to question her diet-her A1C-etc.....We both hated this new thing that came in and dictated our way of life.....Time moves forward and I am glad for it.I don't cry all the time.I found this place and see people here that have had this for years and lived great lives.I see teens,young adults that move forward and I think they will live beautiful lives......I think you and the others moms are the best .

Dads too :}

Don't feel sad.  My daughter was diagnosed 2 years ago and I still can't stop crying.  She was 7 when I found out.  I found out on the day of my

10 year wedding anniversary.  On July 25 2007, I was in the hospital thinking, 10 years ago I was so excited, getting ready for my wedding.  And now exact 10 years after I'm in the hospital with my daughter and I can't stop crying.  

 When my daughter is asleep,   I go to her room and just stand and stare at her, and the tears just don't stop.  I always ask Why her.  Why not me.  Not my baby.  My daughter has not slept over anyone's house since she's been diagonized.  I am too afraid to let her stay over.  I don't even let her spend the night at my parents home.  I am just afraid.  My life will never be the way it was before.  I look at my daughter and I am so sad.  She's a kid.  She's not suppose to be worying about this stupid disease.  She's suppose to be eating chocolate and candy.  All the stuff that kids eat. 

 

Brandan started showing symptoms within a couple of days after his 1st birthday party. (I didn't know at the time that they were symptoms.) 2 weeks EXACTLY after he turned 1 he was in the ICU. It was July 11,2007. Now every time he celebrates a birthday it's also an anniversary for his diagnosis. We always look back on that cute tradition of a baby eating his first birthday cake as the event that pushed his bloodsugar over the limit and made him sick.

I’m a Mom of a 13 year old boy dx July 24, 2008.  I too found myself extremely sad at times. For our family; we want to help our son know he can have a normal life. I don't want him to think it's a death sentence.  It's just a little speed bump. 

We want him to go to sleepovers; we want him to go to camps.  I was a freak the first night he went to spend the night at a friend’s house; that next weekend, I went and got him a cell phone.  That way he can text me his numbers before he goes to bed. Or if he feels like he was having problems in the middle of the night; we can text back and forth.  But for the most part; his friends and their parents have embraced this disease; asked questions and we've educated them.    Don't get me wrong; he doesn't always do everything right.

He went to a basketball camp for a week last summer.  (3 hours away) It was intense; 14 hour days in the gym.  I made friends with the University’s on staff nurse; and she checked in with him during the days.  He had a blast.  I can't imagine; not letting him have that experience.  He learned things from the older boys of pulling pranks and boys being boys.  It's kind of a right of passage.  Plus he was playing basketball and that’s his Mama’s favorite sport! I just want him to have those moments. As hard as it can be on us Parents; we have to let these kids’ live normal lives.  I will say; I can't image doing this with a young one.  I think it would be horrible to have to chase and hold your kid down for a shot; so to you I tip my hat.  That would be so hard. 

Today is a good day for us; so next week, I might be the one on here asking for a pep talk. :)  I also think that sometimes I have to take a step back and allow him to manage himself.  I won’t be here forever (who knows when I might get hit by a bus), he won’t take me to college; and at times I have to back off and look at it as the big picture and is it that he really needs me hovering; or am I being a control freak?   

I've learned to still ask all the questions of, do you have homework?  What did you do in school today?  What are you doing tonight?  How was practice?  Did you learn something new? Then hit him with the SO.... what's your BS?  :)

It's hard... I think of this disease as a roller coaster; I think our emotions are too.  So it's ok to feel sad.... or mad... or just plane pissed off!!! :) 

 

Approaching 1 year into this (New Years Eve) and I still have crying days.  Sometimes, even with nothing is wrong, I look at my daughter (9) playing, sleeping or just thinking about her.......and my eyes welt up with tears.  Sitting her typing this, I am fighting it.  I cry for everything she goes through and will continue to go through.  It sucks, there is simply no other way to say it.  Like other parents, I wish I could take it for her, but I can't.  When I tell that, she says...."oh no mommy; I would never want you to deal with this!"...makes me want to cry more.

Just started week 2 with this and when I am overwhelmed with emotion I try just looking at her and see how happy she is now that her sugars are getting to normal. She laughs like she never has in her life. I also just look at her and am thankful for her being alive. I do try to look at the positives to help me keep it together but its not that easy. Well meaning people tell me its ok she is getting better and will live a long normal life. There is nothing normal about having to stop what you are doing to test her blood sugar it might become routine but normal, no we know what normal is. Its what it was before she got sick and had to do this all. I guess I am not the best person to post to try and pick anyone up because we are still so new to this and feeling way to many emotions right now that are not pretty. I am just looking forward to the day(s) I dont feel like this everyday.

Angie,

The sadness, I find, is always there, but  I think what Chris said in the post of Nov 9 is very true--that though our kids have lost some of their freedom and innocence, they have also found new ways to cope and deal with life that is way beyond their years.  In an ironic way, the disease has "positive" sides. Our daughter can deal with most anything--usually in an unemotional way, and it is partly due to her struggle with diabetes.  Your son hasn't changed--he is still happy and carries on with life. Knowing that our kids just keep on going, that they continue to carry on, can be such an inspiration. 

Marc (Maldives) 

 

i just experienced the same thing the other day. it has been 10 months since my 11 year old was diagnosed and the other day he had a low of 39. it felt like he was diagnosed all over again. the powerlessness i feel on a daily basis is excrutiating. everything seems too fast and im out of control. i need

to hold on to hope. i pray God has given you a sense of peace and comfort during those times!!!!