Parents/caretakers feelings...

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Crohn's Mom

Crohn's Mom

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parents/caretakers feelings...

Hey all you parents of Crohnies/UC out there...

Do you think it's acceptable that we, the caretakers, get to have a breakdown day?
That we just get to cry for no apparent reason, even when things are looking up?

I'm the type that never ever feels sorry for me or my situation. I'm not the one who has gone through all of Gabs suffering.
I hate it when I feel this way.
Sometimes, it just hits me out of the blue.
Today, is one of those days....I just want to cry and I don't know why.
She looks so healthy today and feels so good.

What the (bleep) is my problem ???

Anyone else go through these feeling when everything is moving in the right direction, instead of constant worry ??

Maybe I'm just a nut ! :lol:
 
Crohns mom,
I have alot of those days, my "perfect child" was diagnosed 3/18. Sometimes I just start crying randomly. I do very well at home; in front of him.
This am, at Dunkin Donuts I met a woman who's pregnant daughter has brain cancer. It brought me right into reality. Someone else always has it worse.
I don't want my baby boy to ever have to suffer any of this, and it all sucks. I hope my daughter doesn't get it. I hope they find a miracle cure.
But I guess as mothers, to keep our sanity, we have to have our breakdowns, and be thankful for what we do (or don't ) have.
 
I'm not a mom but I am one of my grandpa's caretakers. He had a massive stroke and caring for him has been hard. I'd almost call it a crash course in parenting but its far worse and that's one big baby! But the crying at random times is normal for people who suffer from depression (like many caretakers do). They're called "crying spells" where all the feelings come on at once and you just can't control it. Seeing a psychiatrist/therapist may help you sort out your feelings better, give you things to look forward to and help you see your situation in a different way which may help these uncontrollable spells. Yes a lot of people are worse off but that doesn't make what we go through as caretakers any less valid.

My family actually went through family counseling when my sister and I were first diagnosed. It may be helpful for you and your family as well (I know as a kid, I needed the counseling).
 
p.s. Since there isn't a font to indicate that I am saying the opposite of what I mean, I thought it might be a good idea to make it more obvious with this post script.
 
Hey T,

I wrote something similar a while back.........

I have such mixed emotions about my daughter. I worry and think about her every single day, not all the time, when you are busy the thoughts are pushed to the back of your mind, it's the quiet times that are the hardest.

At these times I am both angry and sad; why did this happen to my baby, why did it strike her at such a young age, it's so unfair that she has not had the opportunity to enjoy her teenage years, why does she have to suffer this burden for the rest of her life, when will she get sick again. Then there is the overwhelming despair that comes at night - what I wouldn't give for me to have this disease and not her.
Click to expand...

Not a day goes by I don't think about my kids and Crohns, not one, no matter how fleeting. Some days are worse than others and yeah BANG, for no good reason it really hits hard.

What the (bleep) is my problem ???
Click to expand...

The problem is you are a parent that loves their child more than life itself. It breaks your heart to see your baby taking more medication than you ever have in your entire life......it breaks your heart to know that they have suffered more in their short years than you ever have...... it breaks your heart to know that they bear this burden...... it breaks your heart to think about what this disease has taken from them...... it breaks your heart to know that now the future has become uncertain...... it breaks your heart to know that you can never take away their pain and suffering......and it breaks your heart to know that the thing you wish for more than anything else can never happen......the ability to trade places with them.

So we stay strong, caring and compassionate in their presence and we tell them everything will be okay......we tell them we are here for them......we tell them we will always be here for them no matter what......we cuddle them......we stroke them......we hold their hands and we hold their hearts......and when we are alone we sometimes allow ourselves to let down our guard and for all the pent up emotion, unanswered questions and pleas, anger, frustration, fear and sadness to flow unabated.

Guess you aren't the only nut in the bowl T! :ybiggrin:

Dusty. :wub:
 
Why does my tagline say "Ask Dusty"....^^^^^^!!! That's why!!! She calls it her "black dog" days Tracy!! Hope today's a better day for you T!!
 
T....you just have to let it out! After days, weeks, months, & even years (for some)! Of your child being sick (sometimes) without knowing what the cause is! Then you find out what's wrong....continue on full speed ahead with trying to get them relief, well (as can be)....so on & on & on! Then comes some normalcy or an end for a while! You get off your constant go "Guard"! Then boom! What's next or not! The merry-go-round that's not so Merry has just slowed down & you can slowly take it ALL in with time to reflect on ALL that your child has just been through! Not that we don't realize this as we are going through it with them! We have to release! To help keep our insanity sane!

So been there again, again, & again! Many Gentle HUGS!!!! Julz
 
I think we are totally allowed a breakdown day. It hurts to see your child suffer in so many different ways, physically, emotionally. It is stress to wonder if they are ever going to find a cure for this disease, and if not what has the meds that our children had to start taking so early in life done to them that won't show up until they are older. I realize others have it worse and like you it isn't me that is suffering and I don't ask why and neither does Tanner. It still hurts somedays when you see other kids out playing or going out with friends with no worries, all care free, and knowing that you forgot what that was like. Thank God for support from other wonderful parents who understand!!
 
HI..and thanks everyone! I am all better today and back to my normal, smiley and positive thinking self :lol:

@ CrabbyRelish....I'm ok hun, thanks! I know depression (in my extended family) all too well and that is not my case. I do believe Dusty summed up my thoughts pretty damn well. Sometimes I guess we just have to let ourselves, the caretakers, "feel". And that is ok to do, and no one gets hurt. :ylol2:
I am not the type to break down while the going is tuff...it's when the calm is around that I realize what has just happened and then I am the one crying while everyone else has moved on. It's like I'm late to the grief party or something....
Make sense ?

@ mommy.....exactly ! :)

@Troy....I sensed a bit of (sarcasm)? LOL I am hoping and figuring I was right :)

@MOMofIBD...I am there with the "years" part. thank you for understanding...and I know you have a lot more than me on your plate :hug:

and finally...@ Dex (about that Dusty...) EXACTLY !!

Dusty...I couldn't have said it better myself ! Thank you for sharing your (previous-present) thoughts with me, and everyone.

I guess folks....Sometimes (always) it just hurts our hearts!! It is what it is...and we go on fighting for them and wishing it were us instead. And for those people that it is you, and not a loved one, it's just as acceptable for you to have your moments of letting it go as well! So glad we have each other to understand and just "let it go" here and there.

Much luv and respect to the lot of ya !
~Tracy~
 
Crohn'smom,
I will meet you late for the grief party every time.
When Joey was small,he fell. It opened up a hole in his forehead. We waited 9 hoursfor the plastic surgeon. I stood and watched him put 50 tiny stitches in. It wasn't until the middle of the night that I woke up and it all hit.
We do what we do, and sometimes all that love has to spill out somewhere.
xo
 
Feel the same way....

Glad to hear other parents in the same roller coaster ride we are on!!! With our teenage daughter being diagnosed just before Christmas last year, the last few months have been very tough! I think we all deserve our breakdown moments!:rosette1:
 
Well said,DustyKat! The hardest part for me is that I'm just so angry that this had to happen. My child deserves a happy childhood, I had one. I just don't know who I should be mad at.I just can't figure out why "they" can't figure out a cure already.
 
Hey Max's Mom,

Many's the time I feel like that too hun. I look at my kids sometimes and get so bloody p***ed off with the hand they have been dealt. :voodoo:

We will all :hang: together!!! :hug::hug::hug:

Much love, :sun:
Dusty. xxx
 
Dusty,
Your response to "what the bleep is my problem" was awesome. We are all so lucky to have you in this forum. You just know exactly what we all feel and have the perfect way of conveying it. My husband put a note in my makeup box so I'd read it every morning. It says: "I don't want Brian to have Crohn's. I can't change this!!! But I can change how the quality of Brian's life is affected by Crohn's. And I've been a good mother." It makes me cry everytime I read it, but it helps me try to focus on my son instead of focusing on being helpless. Its been sooooooo hard. My son is happy and dealing with this (Which can make me sad when I see how tough he's had to become), I sometimes can't get past the unfairness of it all: He's in a school of 500 kids, he's the only one with this. But then I remind myself that other kids are dealing with other illnesses in our school, some I don't even know about...so I say a prayer for all the kids fighting a disease.
 
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Awww thanks Brian'sMom......:blush::blush::blush:

That is so sweet of your husband to do that! :wub:

It is hard to move past the unfairness at times isn't it, we know we will and we do but it doesn't make it any easier. I have my days when the black dog has stopped nipping at my heels and is firmly ensconced on my shoulders! I hate feeling that way but no matter what I can't stop it from happening, but I do think in some ways we need those days to sort of reset our minds and allow us to continue to be the best darn advocates we possibly can for our kids!

Much love, :Karl:
Dusty. xxxxxxxx
 
You're a mother who truly loves and cares for her children. It's okay to have blue spells and to cry at times. I am a mother who doesn't know whether one or both of my children has a digestive disorder. I know that my mother can get very sad when she sees or knows that either my brother or I are hurting from the Crohn's Disease. We're both grown up with families of our own. You never stop being a parent, loving, or wanting what is best for your child. Hugs for all the blue moods. :)
 
Im srry you felt that way and so glad your feeling better now but I think we all go through this because our kids are our world and its hard when your child is sick & theres nothing we can do to ease their pain.. It happens to me alot of times but we have to try to be strong and focus on the positive things in life. Thanks for sharing those feelings because its always feels good to know your not the only one..
 
Funny this popped back up just when I needed to read it. I just can't seem to get the wind back in my sails......

J.
 
Awe J...it's going to get better, I just know it !
It's so hard on us as parents sometimes (all the time), just some days harder than others.

And, in reference to your other post on your thread...we will not be giving you a group kick...just tons of group hugs and love ! :)

We're here for you always sweetie!
xoxoxoxoxo
~T~
 
We could have a group blow to fill up your sails J!! Wait, that doesn't sound right:) Hang in there mom!

Did C make it through camp w/o incident? I watched that video and it's all smiles and happy but they play those damned tear-jerking songs and I have to fight back tears while EJ was grinning and giggling describing it all!!
 
Aw J, I hear ya mate and am so sorry to hear that the black dog is nipping at your heels.

I hate that bloody dog with a passion and I hope more than anything he leaves your side very soon.

:hang: J, we're all thinking you!

Dusty. xxxxxxxx
 
Crohn's Mom said:
...Sometimes, it just hits me out of the blue.
Today, is one of those days....I just want to cry and I don't know why.
She looks so healthy today and feels so good....
Click to expand...

I think the other thing to remember is that sometimes our emotions overwhelm us AFTER the "crisis" is over. I am not sure if that is a parent thing, a female thing, or a human thing, but being a nurse and having had to deal with tramatic incidents at one time or another (ie death, serious accidents, etc, both in children and in adults), I find that during the actual "caring" part I am so absorbed in the patient and what I am doing for THEM that I forget about ME.... and it is when you go home at the end of the day and the stress of the event is over, that is when you break down. Or, I could just be anther nut in the bowl - LOL!

But seriously, I think this is what it would be like to care for a sick child, chronic or otherwise. You go for so long being the "strong one" that when things calm down, it is like your body says, "OK NOW you can have your crying jag and let that bubble of pent up emotion flow out". There are MANY therapists out there that would say a good crying jag once in a while can be extremely cathartic.

I don't think anyoe wants to see any type of loved one suffer, but I think when it comes to your child, it is hard enough when they have an acute illness.... to try and deal with a chronic illness in your child would/could be devastating. I remember my mom being totally convinced for the longest time after my brother was diagnosed with CD (he was diagnosed about 3 years after I was) that she was convinced it was something she did during pregnancy that caused it. We now know that is NOT true - but I understand that it can be hard to shake the feelings anyway.

To me, as the child/patient, although you never want to share that emotion with your child, as they grow older, your child will understand that you crying for their pain is probably one of the most poignant ways you can show them you love them. (Unless ofcourse you do it obssesively - then we just think you are nuts!! LMAO I am so kidding.... hugs)



I posted this a while back, but I am going to copy it here for you, and for all our moms and dads who have brought us up and through this mess and remember, we all love you too.....:

Dear Mom and Dad;

Well, we made it! I graduated! And I just wanted to say, "Thank you". When I was diagnosed, what seems like, so many years ago, I had no idea really what to expect, so I really wasn't all that scared. But the last 10+ years have dragged us through hell and back... so I just wanted to say thanks:

Thanks, Dad, for being there in the bathroom with me when I was 12, rubbing my back and trying to comfort me as I screamed in pain cause my butt was on fire from all the fissures......

Thanks, Mom, for constantly hounding me to take all my pills so I wouldn't "get sick" even though half of them made me puke anyway... lol...

Thank you both for cancelling so many holidays so you could take me to the doctor. Thank you for travelling 8 - 10 hours to make those appointments, and setting up the back seat of the vehicle as my own little space with a bed and a portapotty so I could be as comfortable as I could be on those long drives, after work, through the night, to get to the doctor and get home again so you only had to miss two days of work instead of three......

Thanks, Mom, for getting up every night at 2am to fill my feed bag when I was on a feeding tube for 6 months. (Oh, and I am sorry you stumbled over my shoes that one night and fell down the stairs and broke your toe.... ... if it makes you feel any better, I have never forgotten, and now I am the one always complaining about shoes being left in the way and picking them up after everyone.... )

Thanks, Dad, for going to the school everyday the year I was in Grade 12 to pick up my school work cause I was in bed in pain for half the year.... I never could have graduated high school with out you.....

Thanks to both of you for letting me rebel and "do my own thing" and letting me make my own mistakes in my teens.... I really wish I would have listened to you and not started smoking, and hadn't drank so much...but I figured I was going to die anyway, so I was going to enjoy life...even if it hurt the next day.....

Thank you for being there for me through university, sending me money when I was broke and couldn't afford food cause I had spent my money on new clothes (AGAIN!!)... for letting me phone you at 5am in hysterics cause my car wouldn't start and I needed to get to the school early to finish my term paper.... I have no idea what you could have done for me 600 miles away... but thanks for not yellin' at me anyway....

I have so much more to thank you for, but I just can't remember it all right now. And now that I have met (my hubby), I have someone else to care for me, clean up after me, drag me to the doctor's when I feel like I am going to die, and rub my back when I am sitting on the toilet screaming in pain cause my butt hurts.....

I know you will always be my parents, and you will never totally "let go", but I am going to be OK now. I will have my good days, and my bad days, and my in between days. But you got me through the worst part...and now, I will be able to make it on my own.....

I love you both, so very much.

As always,
 
Dammit Silver!! Dexky has to fight back tears just like the first time you posted that letter!!:) Thanks T!!
 
Well, that sure brought on the cathartic cry (and smile:rolleyes:)! Where do we keep finding the strength to persevere one more day, through one more crisis? Sometimes I feel like I've reached the end of my rope and then something comes along and somehow there's always a little bit more rope (albeit a bit ragged at times). And Dusty's comment up above hit so many emotions right on! I've told my son, one of the hardest things has been to accept that, no matter what I ask, what I learn, what I try, I just can't fix this! :stinks:(Actually, still have moments when I haven't accepted that I can't fix this!:angry-banghead:)

But, it's really nice to know that there are always so many others here who understand!:sun:
 
Tracy, I hear you. Crying right now has become the norm for me. Hope all is well with you and Gabs.

Silvermoon- Your letter made me cry, but it was so well said. I hope both my angels will feel the same about us when they are old enough to understand.

Much love to you all out there.
Nic xx
 
Silver, that letter to your parent's is inspirational to me. Gab is right at that age where she is feeling "invincible". Add her years of trauma before now on top of it, and she acts invincible as well. (very similar to how you explained yourself) Scares me crazy some days, but I try my hardest to leave her to find her own way and hope for the best. This may be harder than caring for her when she was sick I tell you!
Thank you so much for your kind words, even though my feelings in the initial post here have settled, your words couldn't have come at a better time. There's always a new adventure when raising children, and we as parents are learning with them every day.
So again, thank you from the bottom of my heart. :Karl:

I hope you are on your way to recovering and feeling better :ghug:

Thank you everyone else..It's a bittersweet feeling to know that your not alone with these thoughts and emotions ;)
 
Agreed.

And while we are being honest I gotta say something something not so sweet. While I love my daughter beyond reason, I don't like her steroid fueled manic persona today. I'm just exhausted.

I know I can't be the only one who feels that way and I know she can't help it but it's been an exhausting day.....

J.
 
Yes, it's just you J!! I loved it when EJ was on pred and was an absolute little shit!!:)
 
Dag...an unfashionable(check), socially conservative(eh, fiscally yes, but not socially)person.

Sticks and stones Dusty!! I still love ya!

Dusty:)
 
At least the banter between you will keep me from jumping off the roof. Last night at 9pm she wanted to organize some boxes in the attic. That was after I refused a glitter makeover and fought over her wanting to eat a third dinner. Chris is traveling for work this week. Perhaps Mommy should go on steroids and we'll refinish hardwood floors at midnight (insert slightly maniacal laughter here).

J.
 
Holy Guacamole J!

Since Dex thinks it's fab why don't you send Claire over there for a sleep over!

:hang: Mum! We're all thinking of you...:hug:

Dusty. xxxxxxxx
 
AZMOM said:
At least the banter between you will keep me from jumping off the roof. Last night at 9pm she wanted to organize some boxes in the attic. That was after I refused a glitter makeover and fought over her wanting to eat a third dinner. Chris is traveling for work this week. Perhaps Mommy should go on steroids and we'll refinish hardwood floors at midnight (insert slightly maniacal laughter here).

J.
Click to expand...

You are cracking me up!
 
izzi'smom said:
You are cracking me up!
Click to expand...

Oh Angie - I could tell you some tales. My personal fav is 2 years ago at 40mg a day. I heard Claire playing in her room at some ungodly hour of the morning (like 430) and fell back asleep. She woke me up with a huge grin at about 530am shouting, "THERE'S A SALE IN MY ROOM!" I went in to find that she had emptied her entire closet and dresser (which I'm ashamed to say contains way to many clothes) onto the bed and floor and created piles of clothing that would make a GAP store employee proud. She had hung dresses on her dresser drawers for the clearance rack.

I decided I could either cry or shop so I got some plastic bags from the kitchen and went at it.........

While we aren't quite "there" yet, we are close. I'm sending her over to play with EJ for a few days. Prepare yourself dagly Dex.

J.
 
J I can so feel your pain !
When my middle son Austin was around 4-5 he had to go on prednisone for a few weeks. I had no experience with them before except taking them for hives once myself, which was no big deal.
Austin's emotions were so up and down that I called the doctor crying and asking him what's wrong! One minute he would be dragging out every toy, and moving from one to the next at warp speed...then I guess one of the toys would make him mad (or maybe an imaginary friend) and he would start throwing things and screaming and hitting the walls! I even found him banging his head on the wall out of frustration once ! Thank goodness it was only for a couple of weeks or I may have ended up looking like Medusa !...
medusa3.jpg


:ylol::ylol::ylol:

luv ya! Hang in there ! :)
 
Send her over J!! She can help EJ and Carly redecorate their remodeled bedrooms! Carly is an expert baby-sitter too! It would be just the motivation I need to go out in the heat and get something done:)
 
AZMOM said:
Agreed.

And while we are being honest I gotta say something something not so sweet. While I love my daughter beyond reason, I don't like her steroid fueled manic persona today. I'm just exhausted.

I know I can't be the only one who feels that way and I know she can't help it but it's been an exhausting day.....

J.
Click to expand...

When they talk about the "inappropriate behavior" pred can cause...boy do I know it!! One day I was driving out of a parking lot and Brian unbuckled and covered my eyes tightly with his little hands...all the while laughing hysterically! I hit the brakes and we had to have a talk...then he'd break into hysterical tears!! Boy was I glad when the Prednisone was over :) School was interesting too! I had to clue in the teacher; but Brian still had a week of writing 100 sentences almost every other day (Ie: stepping on kids shoes, talking or laughing in class, running, etc etc etc!!) :) My older kids loved it, they thought it was funny.
 

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