Venting Mom

[tandjjt]

We are 5 weeks out from diagnosis and I am stuggling. Maybe venting a little will help so here are the thoughts that are running through my head:

I am sick of worrying.
I am sick of shots.
I am sick of checking blood.
I am sick of getting up in the middle of the night.
I am sick of counting carbs.
I am sick of explaining diabetes to ignorant people.
I am sick of second guessing myself.
I am sick of my child being sick.
I am sick of low blood sugar.
I am sick of high blood sugar.
I WANT ALL OF THIS TO GO AWAY AND GET OUR NORMAL LIVES BACK!
If this has to be, then I want this to be happening to me and NOT to him!
ITS NOT FAIR.
HE DOESN'T DESERVE THIS.
I'M NOT SURE IF WE CAN KEEP ALL THIS UP.
ITS JUST SOO MUCH AND SOO MANY DETAILS.
WHAT IF I DO SOMETHING WRONG?!?!
I'm tired of being so tired.
I'm worried that he feels as "sick and tired" of all this as I do.
How can I help him if I'm so sick and tired of it myself?!?

I think all this and then it sounds so selfish -- he is the one that is sick, not me. I'll do everything in my power to keep him healthy and strong, but I'm so tired of not being able to think of anything else. Its so overwhelming :(

I know these are probably "normal" feelings as the social worker they sent to us at the hospital compared this diagnosis and the aftermath to the same sort of grieving process that occurs after a death, but I'm having trouble pushing past this phase...

Today is a bad day - can you tell?

[mommyofocean]

Maybe its the day because I am having a very frustrating day too! Things will become very routine. They will get better! I think we all are sick of every thing that has to do with diabetes. This is what we were dealt and we just have to try and deal with it in our own way. Some days you will find you stop thinking about it as much as others. We are over a year into diagnoses and it is definetly better so hang on and try to make sure you have time for yourself. I find getting out always helps. Take Care!

[Muirs Mum]

Hello Teresa

Muir will be diagnosed five weeks this weekend and I am feeling everything you are :( .

[Traci]

We are three years post diagnosis, and I can honestly say I feel exactly the same way you do. On a daily basis, I deal with it fine, but the anger, frustration, and sorrow are there bubbling under the surface constantly. I just want my child to be the happy healthy child he was pre-diagnosis. I have five children and I can honestly say that my life would be so simple and easy if only he did not have diabetes...simple...with five children! Yes! I want to not worry every time one of my children says they are thirsty. I want to tell him he is cured and will not have to have glucose checks and shots anymore. I hate this disease. I hate that my five year old has to worry about everything he eats and drinks. I hate that he can't go to a friend's house or on a field trip without me tagging along. I hate that my husband and I can't go anywhere alone together because I am too afraid to leave my son with anyone. I could go on and on. I'm sorry. I know you were probably looking for a silver lining to this gray cloud. I am usually a "glass half full" kinda gal, but I read your post through tears and just had to let you know that you are not alone. I am so very sorry.

[georgia]

I wish I knew what to say. I could have written this post myself on many days. MY little girl was diagnosed jun 29 2006, and it is a bit easier now. I still think about it constantly but it is getting easier, I am getting more confident, she is getting stronger. It is not fair, it is a horrible disease and I too wish I could take it from daughter, but I can't. So I get very mad and I cry alot, and I just try to love her as much as I can. I am hoping your day turns around, and if not then it is okay. Be mad and be sad, the only way through it, is through.
Hang on, you will get through.

[Ben'sMommy]

Ladies,

We ALL feel this way.
My baby is 33 months old and has had diabetes for 2 years. :(

I feel exactly the same way as you have described. There is NEVER, EVER a moment when D is not on my mind.
I think as time goes on we become better at dealing with these emotions and we can cover them up a little better but they don't go away. They never will, unless our kids get a cure.

Nothing is going to make you feel any better until you have come to terms with the diagnosis and can see some light for the future.
It took me a good 6 months or so before I even got dressed after Ben was dx'd. :o
Then gradually I developed a more positive outlook and realised that as far as diseases go, it could have been a hell of a lot worse. Diabetes is horrific and all consuming but we have to find something positive in the whole mess, don't we.

BIG BEAR HUGS TO YOU ALL.
xxx
:)

[karonray]

AT this point this is your normal. All i can say is when you feel like this to take a step back. Looking at the big picture is tiring and daunting. Take one number at a time, just that number , just that poke, prick,ect,ect. Then it will give you a brake , one that you need once in a while.

[susanH]

if i could add just a little hope here, it does get better. but seeing as we have been in this for 15 years, i can see where that wouldn't sound as promising as you'd like. but it does. i can remember feeling exactly like that; in fact i can remember sitting on my front porch in raleigh and swearing to God that i would cut my right arm off if my son's diabetes could, at the very least, be under better control.

i believe a turning point comes when the child becomes responsible enough to manage stuff and actually feel responsible for doing so; it's almost a sense of pride that he felt when he began pumping and counting and nailing numbers all by himself. granted, he will still have his awful days when he "damns the diabetes" but they are very few and far between. it's a quiet acceptance i suppose; a recognition that this is a disease we can and have lived with. it is not a death sentence, it is a challenge to beat all challenges, but we can live with it because, honestly, what is the alternative? it isn't even imaginable.

there is anger, frustration, loneliness, isolation, misunderstanding, and the list goes on. but let me say, when he would kick that ball thru that net on the HS soccer field there was no greater HIGH for me, and for him because NO ONE on that freekin' field, no one in those stands, no one in that parking lot or on the visiting team, no coach, no teacher, no snackbar worker NOBODY...understood exactly what it took to get him on that field and then, and then to kick a goal....my heart would stop. i've never been higher.

when i dropped him off at college and his roommate was putting snowboards and skateboards under his bed, my kid was putting $6,000 worth of medical supplies under his; that pissed me off so it still hurts but not nearly as bad.

i hope you all can someday find a peaceful co-existence with diabetes; i thought of it as my third child; i couldn't ignore it, it needed alot of attention but if we did it right, it would stay in the corner and keep its mouth shut...there are still times when it raises it's ugly head and i still cry for him but i never ever lose hope and i try to see what a difference this has made in his life as far as his being MILES AHEAD of the emotional and responsible curve.

i have felt your pain. i know where it's coming from, it's mean and ugly but a routine will, someday, fall into place and you'll look at your precious child not as a diabetic but as a kid who just happens to have diabetes.

[madde]

WHAT? ARE YOU READING MY MIND? Seriously, two years post diagnosis, I still feel that way 50% of the time. I am soooo tired. If diabetes isnt enough to deal with, you have to add " LIFE IN GENERAL."

1. SCARED SHE WON'T WAKE UP.
2. SCARED SHE WILL BE LEFT OUT.
3. SCARED PEOPLE WILL JUDGE HER
4. SCARED SHE WILL GO LOW, WHEN I AM NOT AROUND, AND NO ONE WILL
KNOW WHAT TO DO.
5. SCARED SHE ATE TOO MUCH AND HER SUGAR IS SKYROCKETING
6. SCARED SHE DIDN'T EAT ENOUGH AND HER SUGAR IS PLUMMETING
7. SCARED SHE WON'T BE ABLE TO ENJOY LIFE TO THE FULLEST
8. SCARED I WILL MESS UP
9. SCARED OF WHAT THIS DISEASE IS DOING TO HER LITTLE BODY
AND MY BIGGEST FEAR IS
10. THAT THEY WONT FIND A CURE FOR ALL OF OUR CHILDREN.

I DO MY BEST TO COVER IT UP, BUT IT IS ALWAYS THERE, THE FEAR, IT NEVER GOES AWAY. HOW CAN IT? THIS DISEASE IS ALWAYS THERE. IT ISN'T FAIR. BUT, WHEN I FEEL AT MY LOWEST, I ALWAYS LOOK IN HER EYES AND SEE HER BEAUTIFUL SMILE AND THAT KEEPS ME GOING.

[EmmasMom]

At 5 weeks post dx's I was exactly where you are! It is a tough road and it takes time to adjust. I still have days where I feel overwhelmed, sad and angry, and it's been 15 months since Emma's dx's.
In the beginning the bad days are the norm, and then you start to have some good days, and eventually the good days outweigh the bad. I doubt the bad days will ever be gone completely, but they will no longer rule your life. :cwds:
I can now look at my precious 2 year-old daughter and see her, not her diabetes. You will get there!

[Ben'sMommy]

I've just realised that 5 weeks after Ben was diagnosed we were just out of the hospital.
He had been in for 4 and a half weeks.

I was a basket case then.

You'll be ok Teresa. At least you've found us!!!! ;)

[hold48398]

Yea, I know, me too... but it does get easier with time! Endless repetition will turn into habit (even the middle-of-the-night checks) and a new way of life. You will just do what you need to do and stop thinking about so much what you are doing and why this all happened. It doesn't mean I don't care anymore or don't worry. I do care and I do worry; in fact, I worry a lot but I just can't let D ruin our lives. I won't let it destroy our beautiful family, our hopes or our dreams. I refuse. On behalf of Mia.

But know that your feelings are normal and healthy. You will get there, too. You have just started this journey.

[Tamara Gamble]

There is alot of great advice already posted here. It will get better, easier, second nature. You will still worry but you will become an expert, face this thing dead on and both of you, your lives will become bigger than this monster of a disease.

For me I want to know everything and do something to take control. How you choose to slap this monster in the face is up to you. In time you will figure out what you need to do to combat this bugger. Volunteering for something is a great way to change the dynamics of the situation because you are doing something either fighting for a cure or changing a situation for the better for someone else or both. You may not be at this point yet but you will get there.

Exhaustion is tough it makes it hard to deal with this disease at times. Take some time out to breath and nap when you can. You are at the beginning stages which are really tough. So hang in there. We have all gone through and sometimes still go through the battles of fighting the demons.

I'm sorry that you are having such a hard time and will pray for your family as well as the others who are dealing with this disease as well as other chronic or terminal illnesses.

Get involved in extracurricular stuff. I get the whole soccer thing. Ty was diagnosed about this time last year and was playing soccer. Not well, kind of noodle like, but playing. He was afraid to ever do it again as he associated it with his diagnosis so we had to bypass spring season. Guess what? He's back and he's fab. When I see him out there I am so proud. Last game he had three assists for shot on goal from defense. He's eleven. Amazing! I'd never seen him do that before. For those of you who don't know defense is at the other end of the soccer field from the goal.

You have already accomplished so much in the last five weeks. You are just to tired to see it right now. Celebrate the small steps. It's important that you give yourselves credit for how far you have come. Congratulations on making it five weeks! Hang in there! Get out of the house and celebrate!

Good Luck! God Bless!

Tami

[Tamara Gamble]

Marisa, your post popped up as I was posting mine. Congrats!

Good Luck! Tami

[Pammers]

It is a roller coaster ride. Reading the posts her brought me back to that place where all I felt was despair. And there certainly is alot to feel desperate about.

But right now I choose hope. Hope that Joey and I can do this, hope that new technologies will make it easier and better, hope for a cure, hope that his life will still be happy and full.

[Barry]

denial, anger, bargaining, depression, and acceptance.

The most widely accepted theory of the grief process
(Elizabeth Kubler Ross, Psy) identifies five "normal" stages of the grief. Not always in that exact order, and sometimes blurry between the stages. Know you're supposed to feel this way. Sometimes, if you can realize its a process, that you are supposed to be feeling this way, it helps.

[mommyofocean]

HOW GOD SELECTS THE MOTHER OF A CHILD WITH DIABETES
by Erma Bombeck

Most women become mothers by accident, some by choice, a few by social pressures and a couple by habit. Did you ever wonder how mothers of children with diabetes are chosen? Somehow I visualize God hovering over earth selecting his instruments for propagation with great care and deliberation. As he observes, he instructs his angels to make notes in a giant ledger.
"Armstrong, Beth, son. Patron Saint Matthew."

"Forrest, Marjorie, daughter, Patron Saint Cecilia."

"Rutledge, Carrie, twins. Patron Saint Gerard. He's used to profanity."

Finally, He passes a name to an angel and smiles, "Give her a child with diabetes." The angel is curious. "Why this one, God? She's so happy."

"Exactly", smiles God. "Could I give child with diabetes to a mother who does not know laughter? That would be cruel".

"But has she the patience?" asks the angel.

"I don't want her to have too much patience, or she will drown in a sea of self-pity and despair. Once the shock and resentment wear off, she'll handle it. I watched her today. She has that feeling of self and independence that is so rare and so necessary in a mother. You see, the child I am going to give her has her own world. She has to make it live in her world and that's not going to be easy."

"But, Lord, I don't think she even believes in you."

God smiles. "No matter. I can fix that. This one is perfect. She has just enough selfishness."

The angel gasps. "Selfishness? Is that a virtue?"

God nods. "If she cannot separate herself from the child occasionally, she will never survive. Yes, here is a woman whom I will bless with less than perfect."

"She does not realize it yet, but she is to be envied. I will permit her to see clearly the things I see .... ignorance, cruelty, prejudice ... and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life because she is doing my work as surely as if she is here by my side."

"And what about her patron saint?" asks the angel, his pen poised in mid air. God smiles. "A mirror will suffice."

[pookas]

It seems to me that all of us here are on a tight control regimin. Whether it is NPH, Lantus-Novalog/Humalog, pump or other means, it is better than they had years back. We HAVE the resources to manage D alot better than years b4. Think positive. I see my FIL w/ the Triple by-pass/Quadruple-by-pass, the kidney transplant [which has failed as of late]. Well, he's in his 60's and has all these resources and able to better his numbers, yet...he chooses to not use them and listens to his old-school Dr's. We control D, IT DOES NOT CONTROL US!!! It IS stressfull, IT IS sad, IT IS not a good thing, BUT DO NOT SUCCUMB to the grief, and the bad things that you think of. We all hate the shots, the stress, the wondering, "What if?" Five weeks in, we were close to xmas and I could only think about keeping my child happy and healthy and I cried and I had anxiety attacks. I still cry, it's ok to cry for your child. If you weren't sad, you wouldn't be human. WE as parents of a child w/ a "disability" have to be Superhuman, so to speak. Your friends, and family don't have to deal w/ this day after day after day, YOU do. And, you will... Please be patient w/ D. It is not easy, but you WILL adapt, and you will be a "Super Hero/Superhuman". Cry, get pissed off, it's ok. That's what we are all here for...

[Boo]

Teresa,

On behalf of your son, thank you for helping to shoulder this huge burden for him. I believe it is one of the best gifts that we can give our children with diabetes. It is not easy, and they have a lifetime of self care ahead of them. 2+ years into our diagnosis, it is still a daily struggle. However, it has gotten easier, and more routine. For better or worse, you come to accept that the numbers will not always be within range. You do the best you can. I always think that type 1 diabetes is the disease that you always feel like you're managing okay, but could/should be doing much better. (i.e. you get an a1c of 7.1, but think to yourself, "if we could only get below 7".......fast forward 3 months when your next a1c comes back at 6.8, but the endo thinks your child has experienced too many lows, and wants you to loosen the control a bit).

Type 1 diabetes is relentless and very hard on the caregiver. It is very easy to get burned out. I have been there many times myself, and that takes into account that I have a great kid and an involved spouse, and 2 sets of supportive grandparents living within an hour of us. I guess what I'm trying to say is that it is okay to feel that way occasionally, especially so early into it. Make sure you get some time to take care of yourself!! And if, down the road a bit farther, you're still feeling so down, get some professional help. That's okay too! Your "bad days" should get fewer and farther between as time goes by, but you will always have some. Eventually though, you'll learn to just have "bad moments" instead, and it seems easier to bounce back.

Good luck to you. I hope tomorrow is a better day!

[momof2]

I'd like to ditto everyone else's responses to you. I'm sure you've found great comfort and understanding in them. The great thing about this forum is that we all truly understand what you're going through. We've all had/still have those days. What you are feeling is normal, albeit extremely hard.

We, too are almost 6 months into diagnosis. We're coping well, but the whole thing is so consuming. I never stop thinking about d, but I've come to accept it, and take each day at a time. Also, everything new is a hurdle and you will jump over those hurdles successfully and you'll be very proud of yourself.

Worry? - That never stops, but I try to carry on and enjoy each day.

I have every confidence you'll feel lots better soon, probably (in some ways) quite immediately from reading all these lovely and supportive posts you've received.

Well done on finding this forum!

My thoughts are with you

{{{Hugs******
:)

[OSUMom]

Aww SusanH - you hit home with me with your box of diabetes supplies under the dorm room bed. While other parents are concerned about their kid losing his/her BUCKID card, I'm worried about losing the insulin pump during strenuous exercise when he removes it.

Teresa so glad you found support here. You will go through grief with this - and I'm right there with you after my son being diagnosed 3 months ago. My son is 19 now, and we are a little different with the age thing - but we are very much the same too! Cyber hugs to you!

[Pammers]

denial, anger, bargaining, depression, and acceptance.



Was someone doing a study on me? :cwds:

[Colinsmom]

WOW.

It's like you are all in my head...
The things we worry about other can't possibly understand.
We were out the other night seeing my husbands band play. Colin was dancing and having a great time. But guess what he wasnt doing? He was haveing so much fun that he refused to eat or drink. So I told my hubby that I needed to take colin home. Some people near us said "why dont you just let him be a kid."

Clueless. These were people that knew he had diabetes. But to them its only eating sugar free foods. they have no freaking idea the things we have to worry about and how hard it was to carry my screaming 3 year old out of there and take him home just to get him to eat something. No idea.

[pookas]

Gayle, I would have said "Ok I'll let him stay, but when he goes into a seizure from low blood sugar, Would you like to inject the Glucagon?"

Just like my BIL's kids when we were all at the cabin for vacation. His kids constantly had a Mtn. Dew or one of those plastic sugar juice bottles in their hand gooing everything up. They would have fruity pebbles when they got up, then grab a Mtn. Dew!! These kids are 4 and 7 yrs. old. BTW, they are also predisposed to D like Hunter, they share the same grandfather. What would happen if one of them got D? It would be so hard for them to adjust. I just feel bad for those children.

[tandjjt]

It did me some good to get all the comments. Just knowing I'm "normal" helps me deal with all the emotions without feeling like I'm just a freaked out Mommy ;)

Today I feel a little better - probably because I made Daddy take over last night and got a few extra zzz's. Only today I feel like I'm about to get my annual fall sinus infection... bummer:( when it rains.........

I've got a call in for the D-team to go over all these lows we are having so maybe they will give me some adjustments and make things a little easier for the weekend.

Next week we have 2 days that will be WAY off schedule. One day they will eat lunch at school early (at 10 AM) so they will be ready to go on a trip to see a play (I'm meeting them there as where they are coming is close by my office) and one day when they get out at noon so no lunch will be served at all :confused: We'll have to figure out how to adjust and then just cross our fingers.

Thanks for the encouragement - Ya'll are the best!

[Momof4gr8kids]

The thing that this forum has helped me with the most is knowing I am normal. Knowing I have a place to come, and vent that people KNOW exactly what I mean when I whine that I can't get Julia's B/G figured out, or say I am so tired from nights of not sleeping because I had to check her at midnight 3am, and 6am. Also when I come on, and have happy news like the pump trial. Not one other person in the world would understand how nice it is to be at that stage, or just having a week of good B/G.

My mother in law is the mom of a child with type one. She still sends her donations in yearly to the JDRF, raises money, and does the walks. She still asks him, and me how his B/G is doing, and buys him diet soda everytime we come to visit. Over the years when he has been unable to care for himself because he was sick, or so low that it was almost 911, or glucagon time she has been there to advise. The point of this is, that no matter how old your child is, you still fight for this cause, and for them. She may not have to take care of him anymore, but she is still involved, and still cares deeply, and loves him.

It does get easier as time passes. You sink into a routine. You learn some fun tricks like truning needleless syringes into squirt guns, and how to make toys out of various medical supplies. There is a book called The best year of my life. It is a great book, not just for kids, but for parents too. It is one the whole family can share. You also learn to take time for yourself. My DH does the bedtime shot. From 7pm until 10pm it is his shift to worry about B/G's, injections, and anything else that arises. I get to soak in the tub without worrying about Julia going low, or I can visit a friend, make a phone call, read, do whatever I need to, to nurish my soul. Everyone needs this time to not think about, or worry about the diabetes. My other children also need me to be able to focus on them as well. It is a balancing act that take practice, but as you go becomes less difficult.

Jamie