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07-28-2014, 07:55 PM   #1
Mehita
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Need a hug...

I hope you all don't mind me venting here. I'm just heartbroken and have no where else to turn.

Some of you know DS was granted a wish from Make-a-Wish and we're about to go on his big dream trip. We didn't tell people for a very, very long time because we were afraid of the criticism that we might get. Well, guess what? It's here and I've been crying for a week, completely regretting telling anyone.

My BIL thinks we're rich enough to go on this trip on our own. Also thinks we should pay medical bills with the money instead. My brother says DS isn't terminal so he doesn't deserve it. He should give his wish up to someone else who is sicker. I've been told we're being selfish, greedy, and taking advantage of Make-a-Wish. I should mention that Make-a-Wish approached us, not the other way around. We also turned them down initially.

If DS knew any of this, he'd be absolutely devastated, so, as his mom, I'm taking it all in order to protect him... but it's sooooo hard and it hurts soooo much. People who I thought were on our side, so to speak, I'm finding out really aren't. My sister tried to defend us with both BIL and brother and now everyone is fighting and not talking to each other. I can't talk to my husband either because he wasn't keen on the idea and I'm afraid he'll just throw it back on me. I love my husband, but he's not the caretaker. Never has been, probably never will. He's never stayed at the hospital, never did the IV abx, doesn't have pics of bloody toilet bowls on his phone, has never collected poo, slept through the vomiting and all nighters, only reads articles if I email them to him, so even he doesn't "get it".

This was supposed to be a good, happy thing for DS and it's become a big mess.

Why do I need to justify this to people? Why can't people just be happy for him? Just hug him and tell him to have a great time? Our kids go through hell and no one understands.

I'm tired of crying and just want to crawl in a hole and hide from the world.
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Mom of DS, age 17, dx Crohn's and Celiac Oct 2008
- Remicade, started Nov 2013, added Solumedrol June 2015
- added Methotrexate/Folate March 2016
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- Small bowel resection, Jan 2013

Last edited by Mehita; 07-28-2014 at 08:55 PM.
07-28-2014, 08:06 PM   #2
my little penguin
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Ok big hugs to you
Some people are never going to get what your kiddo has endured or will endure no matter how you try to explain it so don't .
As Flo used to say tell them all to "kiss my grits"...
Period
It's not up for discussion .

Get your big girl pants on tommorrow .
No arguing since you can't cure "stupid"
Sorry but I have had to grow very thick skin and stopped defending things along time ago.
Most people think life threatening food allergies are made up or easy to avoid just don't eat xyz so I have learned some things you can't explain enough and this is one of them .

Before your trip get "grow " your backbone and tell them all to go to $$$$
And leave so you can enjoy a much deserved break .
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07-28-2014, 08:42 PM   #3
DJW
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So sorry.
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07-28-2014, 08:47 PM   #4
InkyStinky
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Mehita, I wish I could hug you in person! I was dx as a child, and it wasn't until years later that I heard about all the thoughtless/petty things people said to my mom... for years and years.

Not having any children myself, I can only imagine what you're going through. But I think my little penguin's advice is spot-on.

Thank you for being such a wonderful mother. Have an awesome vacation with your son - here's hoping you guys have the time of your lives!

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IBD diagnosed 1990 @ 8yrs old (current dx: Crohn’s); Blood clots 12/2009 (DVT, bilateral PE)
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-Are you looking for a new treatment option for your Crohn's disease? If so, I suggest you look into the ongoing clinical trial by Qu Biologics for their SSI treatment. Click here for more information or to help spread the word.
07-28-2014, 08:50 PM   #5
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Many HUGS to you! You are doing the right thing for your son - he deserves this experience!!! Only 100000 kids in the US have IBD - that's less than 1% of the child population. How could anyone understand that!?!

Many years ago, I followed a blog of a young child with leukemia. He was a twin, and his father a successful doctor. He received a stem-cell transplant from his brother which led to his successful recovery/cure. He received a Make-a-wish -- an amazing backyard playset. His parents could have easily afforded it -- but was that the point? A fun surprise is just what childhood calls for IMHO.

Rest easy and enjoy your trip--that is the only thing that matters.
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07-28-2014, 09:00 PM   #6
Tesscorm
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Totally with MLP and those above! Even if your brother and BIL feel the way they do, why do they feel compelled to share their view with you?!?!? This makes me soooo mad!!!

I think you should write down exactly what it's like for DS, what his symptoms are, what it's like for him to miss school, how he's felt missing out on boy stuff (sports, parties, school trips, etc.), how he's learned to deal with the pain, what 'hits' he's taken, which have knocked him down and which challenges he faced and overcame. And, I would include how heartbreaking it is to watch him, as a child, deal with all this and know you can only do so much, how you look at other children and feel the heartbreak and guilt when you wonder why your child? Add in the worry of the meds' side effects and that DS' illness is lifelong. Let them know that you initially turned down Make-A-Wish, let them know what simple things DS has wished for in the past (a day without pain??) and then ask who still feels that DS doesn't deserve this trip. Then end it saying that you don't want to hear anyone's thoughts or feelings about your letter - they can keep silent as you have done for the last number of years.

I'm so disgusted that people would feel the way they do and would dare tell you how they feel!!

When I find myself in similar situations, I ask myself if the other person would do or feel for me, what I'm considering doing/feeling for them... if the answer is 'no', then they can scr... off!

I'm so sorry that you're family is causing you heartache... easier said then done but, really try not to let it upset you!
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07-28-2014, 09:22 PM   #7
Clash
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I'm so sorry that you are having to face this from your family. I agree with Tesscorm and MLP both of their posts express my opinions very well. Also just wanted to send a hug!
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C age 19
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Dx May 2014: JSpA
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07-28-2014, 09:35 PM   #8
Maya142
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Sending SO many hugs, most people just don't get chronic illnesses. They don't realize how sick our kids truly are -- and how much pain and discomfort they have to endure daily. In fact, I wish that Make-A-Wish granted wishes more often for chronically ill kids -- who have given up much of their childhoods because of being sick. My daughter no longer remembers what it's like to not be in pain.

I like MLP's response - you certainly can't cure stupid. People will see (and judge) what they want to see. I would just ignore them (though alternatively, you show them pictures of bloody poop -- that usually stops all comments).

You know that your son (and your whole family) deserve a break. Have an absolutely wonderful trip !
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Mom of M (20)
diagnosed with Crohn's Disease at 16
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Mom of S (23)
dx with JIA at 14
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07-28-2014, 09:44 PM   #9
Jmrogers4
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No one can understand unless they have been through it. I know kids with terminal illnesses definitely deserve every wish they get but our kids deal with years of being ill and malnourished looking like starvation victims and when they finally feel better it may only last a week, month, a year. We can hope for many years but always knowing it's going to rear it ugly head and bite them in the butt (pun intended) and when it does we hope it's only mildly. No it's not "terminal" but I can honestly say I worry about the complications and those things that can be terminal. Why not have a grand time when he is feeling well and can enjoy the trip and until they have walked a mile in your shoes, your son's shoes they just need to shut their pieholes. They have no idea.

I think all these kids deserve wishes. Make a Wish and his doctors think he deserves it, they picked him so go enjoy, take lots of pictures and we'll all be here waiting to see them.

Big Giant Squishy Hugs
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Past meds: Imuran/Azathioprine; allopurinol; methotrexate; LDN; Prednisone; Apriso; Pentasa; EEN

Husband dx Crohn's 3/1993
currently none due to liver issues
07-28-2014, 10:03 PM   #10
greypup
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What a shame that family doesn't understand. May the ones closest to them never have to go through what your son has gone through.

He deserves this trip regardless of anyone's financial situation. And you own the right to be upset about their failure to understand and support you and your family.

I hope that you both enjoy the trip! You are a WONDERFUL mama!!!!!
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07-28-2014, 10:07 PM   #11
my little penguin
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One of my adult Ibd friends once told me when they were dx the doc said I have good news and bad news -
Good news your not going to die
Bad news you have crohn's so your going to wish you did.

You could always youtube images of a dusease coloectomy removal .
That may not be enough
07-28-2014, 11:09 PM   #12
Momtotwo
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I am tearing up as I right this as I am both sad and angry on your behalf. As difficult as it will be, do not allow the ignorance and insensitivity of others affect this this trip. Your son deserves this moment of happiness.
07-28-2014, 11:17 PM   #13
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I think he deserves it just to see a smile in his face and I hope he gets the treatment that will work hugs to u and your son from lil old New Zealand Kia kaha means stay strong xxx
07-29-2014, 06:31 AM   #14
DustyKat
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Oh my Mehita. MEGA MEGA MEGA hugs to you!

Your lad wouldn’t be going on this trip if he didn’t deserve it hun. As you have said, the Make a Wish people contacted you and not only that, it is clearly abundant that you have very exceptional morals and no doubt would not have entertained the idea if you had any shadow of a doubt about it. You are answerable to no one in your family or circle of friends. Ignorance is a dreadful thing and in this day and age I personally feel there is little excuse for it but unfortunately it is generally those very people that are the freest with their opinions.

Hold your head high Mehita, you have done nothing wrong and have nothing to be ashamed of. This will be a wonderful time for you both and we will love having you both down here! And to those that think and say it is not deserved well you can just tell them in some good ‘ole Aussie slang to go root a boot!

On and Upwards to Oz!

Dusty. xxx
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07-29-2014, 09:17 AM   #15
DanceMom
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Ignorance and jealousy can make people say some pretty awful things. I'm so sorry that you aren't getting more support about this trip! You can vent and cry for a short time here, but then you need to put that aside (and people aside if they just can't be nice) and enjoy every single second of your son's fabulous wish!

I've learned a few things through having a chronically ill child. First, I don't have to prove to anyone that she's sick. I'm there when she's crying that she doesn't feel well. I'm the one sifting through those disgusting stool samples. I'm the one with bloody poop and hives pictures on my phone. If anyone doubts that she has anything more than normal childhood problems (and my in-laws have plenty of doubts) I don't have to make myself crazy proving otherwise. It isn't my problem, it's theirs. Second, it isn't a pissing contest to see whose child is the "sickest". Sure, there will always be someone out there worse off than A. That shouldn't minimize what she is going through. No kid should have chronic pain, monthly infusions, hospital stays, daily medications, and the fear of not being able to find a restroom in time. Our kids are special, and because they are so awesome they deserve every amazing thing that comes their way.

Have fun on your trip and cherish every single magical second of it!!!
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07-29-2014, 09:26 AM   #16
Jane and Nick
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What a difficult position to be put in. I think people have associated make a wish with only terminal illness and that is not the case. Unfortunately the majority of people will not know that the foundation approached you. How dare they judge ? People need to walk a mile in your shoes and experience first hand the distress and suffering that goes hand in hand with this sneaky disease. Life threatening? not always, but life limiting? yes every single time.
Take a deep breath and enjoy the gift you all deserve. Soon enough it will be yesterday's news and you will be richer for it. Try and find away to come to terms with hubbies position, some times agreeing to disagree is the only way to maintain an otherwise great relationship.
Thick skin and momma bear character needed.
Wishing you peace and comfort and huge hugs, never forget it is deserved and warranted.
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07-29-2014, 12:04 PM   #17
awmom
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I'm so sorry you are going through this Mehita. What makes me sadder than anything is the fact that in doing this, the critics in the circle are losing sight of the most important thing, and that is DS. As many have said, most people don't realize thAt many of our kids childhood memories are of pain, bathrooms, malaise, doctors......if you can provide one fabulous memory for him, hurray for you! If you had provided this trip yourself, as they said, you would have been criticized also. I also think that receiving this from an organization meant for just this purpose is more meaningful not only to DS, but to all kids with Crohns....it is a recognition of the seriousness and life changing aspects of this disease. We constantly have to tell our kids, sorry, life is not fair and you will have to deal with this the rest of your life. I'm glad you took up the opportunity that was offered. You have nothing to feel bad about. I hope you have a wonderful time!
07-29-2014, 12:52 PM   #18
CrohnsKidMom
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Family. Ugh. I would just refuse to argue or justify this with your family. As you said, you were approached by Make-a-Wish, you accepted their offer, and now you are going on this trip and will have a great time. I would definitely keep this from your son too, he doesn't need to hear all the nonsense. Sending you great, big hugs. Now go and have a FANTASTIC trip!
07-29-2014, 07:20 PM   #19
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You've received a ton of great advice so I'll just add more hugs to the pile. Send BIL a pair of your shoes and tell him to walk a mile in them and then he can comment. I can't believe how insensitive people can be! Enjoy your trip!!!
07-29-2014, 09:15 PM   #20
Mehita
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Thanks, everyone. I can't tell you how much your kind words mean to me. It's been a tough week. If they only knew everything he's been through... and the likelihood that it will happen all over again and again and again. After reading your posts, last night was the first night I've been able to fall asleep.

Big girl panties - check.
Phone off - check.
Family tree thinned out - check.

Hugs to you all!
07-30-2014, 12:21 PM   #21
kimmidwife
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Mehita,
What Tess said about writing that letter is fantastic advice. I would also add that make a wish made the decision last year to try to grant wishes to children with chronic illnesses because of all the suffering they go through. They realized that these kids deserve a special time as well. I would send them the letter right before you go so they will read it and have time to think it over while you are away. Please enjoy the trip. Your child is very very deserving of it. All of our kids are!
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Crohn's Dx'ed Sept 08
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EENOct 31 - Nov 28th. Too hard!
Retried Remicade Dec 11
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New secondary diagnosis: Gastroporesis Dec 2013
Lost remission June 2014
Started Entyvio April 2015. Decreased to every 4 weeks October 2015. Praying for remission.
07-30-2014, 12:24 PM   #22
kimmidwife
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This is from make a wish, read the line where it says won't accepting a wish mean we have given up hope for our child.

http://utah.wish.org/content/faq
07-30-2014, 12:45 PM   #23
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It is unfortunate to have to deal with incomprehension, more so when it is in the close related family. We can't make someone's mind... I can only suggest you that they take a minute coming on the forum and to read what we have experienced through our lifes with Crohn disease. I don't mean to twist the knife in the wound but this is a chronic condition and if they can't understand that this wish is an experience that may help him to appreciate life despite all the inequities he will be going through, then this is pretty sad...

May you give them my word that the wish I received (from another foundation) has helped me cope with the insanity of my condition....

Big hug
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07-30-2014, 01:00 PM   #24
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I hope you all don't mind me venting here. I'm just heartbroken and have no where else to turn.

Some of you know DS was granted a wish from Make-a-Wish and we're about to go on his big dream trip. We didn't tell people for a very, very long time because we were afraid of the criticism that we might get. Well, guess what? It's here and I've been crying for a week, completely regretting telling anyone.

My BIL thinks we're rich enough to go on this trip on our own. Also thinks we should pay medical bills with the money instead. My brother says DS isn't terminal so he doesn't deserve it. He should give his wish up to someone else who is sicker. I've been told we're being selfish, greedy, and taking advantage of Make-a-Wish. I should mention that Make-a-Wish approached us, not the other way around. We also turned them down initially.

If DS knew any of this, he'd be absolutely devastated, so, as his mom, I'm taking it all in order to protect him... but it's sooooo hard and it hurts soooo much. People who I thought were on our side, so to speak, I'm finding out really aren't. My sister tried to defend us with both BIL and brother and now everyone is fighting and not talking to each other. I can't talk to my husband either because he wasn't keen on the idea and I'm afraid he'll just throw it back on me. I love my husband, but he's not the caretaker. Never has been, probably never will. He's never stayed at the hospital, never did the IV abx, doesn't have pics of bloody toilet bowls on his phone, has never collected poo, slept through the vomiting and all nighters, only reads articles if I email them to him, so even he doesn't "get it".

This was supposed to be a good, happy thing for DS and it's become a big mess.

Why do I need to justify this to people? Why can't people just be happy for him? Just hug him and tell him to have a great time? Our kids go through hell and no one understands.

I'm tired of crying and just want to crawl in a hole and hide from the world.
So so sorry to hear how you're being treated, but you sound like a wonderful mother and I hope you and your son enjoy your much deserved trip! Don't let others ruin your joy - remind them them that just because everyone has an opinion doesn't mean you want to hear them! Here's a group hug - sounds like you need it!
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