How do you respond - I WISH I WERE NORMAL!

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scrapper1264

scrapper1264

Joined
Apr 11, 2011
Messages
53
Of course the first thing that pops out of my mouth is well, you are normal to me. Well, that didn't help at all! He said Mom, I am not normal! Then I thought I should say well, God makes us all different. But I don't want him to be mad at God! He is very compliant with all his meds but before/during/after his humira injection is when he cries I WISH I WERE NORMAL. Any help would be appreciated!
 
I am sure you have said this all before but for starters I ask them "what is normal" then ask them "who gets to define normal". Normal is different to every person and you never know what issues everyone else is dealing with that we can't see. A lot of people are dealing with emotional, physical, financial, safety etc issues. Normal is not to be defined by anyone other than you and in your context.

Now if he asks, why can't I be perfectly healthy...well then that is tougher but again it goes back to everyone has their trials and tribulations and honestly if everyone were to lay their troubles on a table you would probably pick your own right back up. Thats not to say that what they have to deal with is no big deal it is just that they can't compare to others because what they can't see may be even scarier.

I have a daughter with an ld and a friend with a brilliant, high academic achieving child. I always envied her until one day she told me he had zero social skills and no friends what so ever and spends many a lonely day wishing he were more like my daughter. His mom also confessed that she often thought she would trade places with me in a minute. I guess the grass is always greener. We have to look for the blessings in each day and each situation as that will be the only way we can keep on keeping on and not get defeated.

As for me, I am definitely not normal and I wear it proudly...life would be too boring if I conformed to what everyone else thinks is normal!
 
Hmmm...I often think this is where answers aren't what is needed but rather validation, but it is hard to say not knowing the exact situation you are dealing with IYKWIM.

I have dealt with this with my own children and I deal with it in my work. It may not always be phrased that way but the wishing is the same.

With my own children I have never offered up an answer as such. In their eyes, and at that point in time, they weren't normal, they wished they didn't have Crohn's and the irony is that is a normal way to feel and it is okay to feel that way. They need to express and they need to feel the emotion so they can learn to deal with it. Nothing I could say would ever alleviate the anger and frustration because it belonged to them

So what did I do? I held them, I soothed them and I said..."I know baby" :hug:

Dusty. xxx
 
Wow Dusty you are so right...again......I remember week 5 of EEN O declared "my life sucks". That brought me to tears. I said your life doesn't suck but Crohns sucks and EN sucks and just about everything else that goes along with it all sucks. She felt so much better knowing I agreed.
 
When they grow up they'll realize that the idea of normal doesn't even really exist. Until then, Dusty is right. All you can really do is be there for them. Wanting to be normal is so common and we all get through that in our own way.
 
Oh my we have so gone through this. It is so rough. Caitlyn went through a time last year when she thought G-d hated her. We talked it through and got through it. We just take it day by day but there is no question it is so rough on our babies.
 
Reall like the comment duskykat made I've been there , I tell Lewis your normal to me and that's all that matters With lots of love and kiss.s.. X
 
Hugs to you.
My girl is three and thinks everyone has to have their mom go to the bathroom with them. She thinks it's normal to hop up in the chair to have labs done. Sad I know.
I'm sure the day will come where such a question will have to be answered.
Great advice from all.
 
I just tell my sweet baby girl.... This is your new normal. And whatever that normal is now we will get through it together.
 
You guys are all amazing moms! :D

I once read a story, long before Stephen was sick and it always stuck in my head, about how children needing extra care were God's special angels and that he gives these kids to parents he trusts and who are strong enough and special enough to take care of his special angels... your replies above proves the story right! :ghug:


With Stephen, I tried to make him understand there's always a 'balance' - he has lots of great qualities and these qualities will give him some advantages in life, however, everyone will have their cross to bear and very few people, if any, will go through life with advantages and no struggles/obstacles. And, unless you are in their shoes, you really can't understand how hard or big those struggles are.

But, I think, the older you are, the easier it is to understand this... :ghug: My heart breaks for the younger children who must deal with this, it is so unfair. :ghug:
 
I wish there were support groups for our kiddos. Lukas also has Celiac disease and there is this amazing group called Raising Our Celiac Kids (ROCK). They have picnics, a summer camp, an annual fundraising walk, and all sorts of activities to get the kids together. At the last picnic there were 22 Celiac kids. Many of the teens and tweens got together and just started talking to each other about what their favorite GF foods were and what restaurants they've had good luck eating at. It's just a nice outlet for the kids to talk to others and realize they're not the only ones living with Celiac.

Unfortunately, beside you guys, I don't know other families living with Crohn's. I do try and share (appropriate) stories with Lukas from this forum. Stephen, Danny, Grace, Caitlyn, Johnny... I think that helps. Daily meds, injections, and moms with poop charts IS normal for this group!
 
Hey Mehita,

I would PM some of the other US Mum's on here or start a thread about support groups, camps etc as I know there are fund-raising walks, get togethers, camps and so on that many of the kids on here attend.

Also go to your local support group on here.

Have you looked on the CCFA website and at the local chapter?

Dusty. xxx
 
DustyKat
The problem with CCfa in the US is there are very few children members.
There may be some older teens (19-22).
We went to our local walk. Out the hundreds of crohns patients there only 3 including DS were younger (5-13) crowd.
It really makes him feel even less normal.
I even talked to the head of our chapter to verify that was all there was.
DS has even looked at the infusion center nada.
 
Do you think that is a truer representative of the number of younger children with Crohn's in a given local area? Does that question make sense?
 
That makes sense.
Less than 10% of those with crohn's are under 21.
The number goes down to 1-2% when you get under 15.
I know the improve care network across the entire us 36-40 pediatric centers including older kids has about 10,000 so in one region the number could be really really small.

When DS attends the faan walk ( food allergy) there are only a few hundre people there but 50% are the under 14 crowd so I really think the walks reflect the true numbers for the areas.
 
Tesscorm said:
You guys are all amazing moms! :D

I once read a story, long before Stephen was sick and it always stuck in my head, about how children needing extra care were God's special angels and that he gives these kids to parents he trusts and who are strong enough and special enough to take care of his special angels... your replies above proves the story right! :ghug:


With Stephen, I tried to make him understand there's always a 'balance' - he has lots of great qualities and these qualities will give him some advantages in life, however, everyone will have their cross to bear and very few people, if any, will go through life with advantages and no struggles/obstacles. And, unless you are in their shoes, you really can't understand how hard or big those struggles are.

But, I think, the older you are, the easier it is to understand this... :ghug: My heart breaks for the younger children who must deal with this, it is so unfair. :ghug:
Click to expand...
. This is such a lovely post it actually made me cry a little, our babies are our specail angles they go through so much and just want to be lovd in return . When I have a bad day I.ll come and read this post . Thanks you.xxx
 
I've tried to find the original story so many times, but never could... thought I would try one more time today and found a link to a poem! When I originally heard it, it was actually part of a longer story but, the 'idea' is very similar, it must have come from this poem.

Link is below. For whatever reason, although I heard it years before Stephen was diagnosed, the gist of the story always stuck with me. Maybe a bit corny :redface: but, the story/thought helped me quite a bit after Stephen was diagnosed and I was coming to terms with it. :)

Warning...:) you may need tissues! :cry:

HEAVEN'S VERY SPECIAL CHILD

A meeting was held quite far from Earth!
It's time again for another birth.
Said the Angels to the LORD above,
This Special Child will need much love.

His progress may be very slow,
Accomplishments he may not show.
And he'll require extra care
From the folks he meets down there.

He may not run or laugh or play,
His thoughts may seem quite far away,
In many ways he won't adapt,
And he'll be known as handicapped.

So let's be careful where he's sent,
We want his life to be content.
Please LORD, find the parents who
Will do a special job for you.

They will not realize right away
The leading role they're asked to play,
But with this child sent from above
Comes stronger faith and richer love.

And soon they'll know the privilege given
In caring for their gift from Heaven.
Their precious charge, so meek and mild,
Is HEAVEN'S VERY SPECIAL CHILD.
 
Thanks for this Tess! We had one of those why can't I be normal nights two nights ago. Caitlyn was very sad and saying she can't do this anymore. ( I hate when she says that it breaks my heart). She had a pretty good day today and seems in better spirits. Ugh why does life have to be so hard for our babies?
 
It really is so lousy! :ymad: Tough enough moving into those teenage years!

But, I'm glad she's feeling a bit better! :)
 
Oh my friend Tesscorm,:hug:

What a beautiful poem.

I read it and though of my twin. She's had such a hard time with her son's dx of epilepsy.
I read it to her and she was emotional and said the angels have sent her two children like that. Her daughter 7 yrs old has been mentally challenged since 1yr. Then she told me that her daughter upon testing today was also found to have epilepsy.:( What could I say but cry with her. I'll be printing that poem up and giving it to her. Thanks!
 
Farmwife, what a difficult time for your twin (and your whole family). My heart goes out to her! :ghug: :ghug:
 
Thank you so much for posting that poem. DS had an incident today at school and told his teacher that he wished he were normal. I will definitely share this with him tonight during our quiet time.
 
Scrapper, there is a summer camp every year for IBD kids through CCFA. They are regional, we are in VA and I see you are in NC and the one we went to was in WV, but I think there is a NC one.
ALL the kids and MOST of the counselors have IBD. At the one to which V went, a doc there also had UC. She absolutely LOVED camp.
You can find out all details on the CCFA site.

V has never not once complained about her altered life. Not when she missed school, events, and fun activities, not when she has to have tests and treatments. She is a much better human being than I am, far nobler and far more tolerant of adversity. I, not she, am the one lamenting WHY she cannot just be normal. I will never ever be reconciled to it. :mad:
 
oooh I've gotten that phrase and the first thing I told him was there is nothing wrong with being different. Normal is boring and to stand out makes you shine amongst the rest. It seems as if after I said that, my son embraces being different from the rest of the kids.
 
Thanks guys...this gives me strength! I wish I read this a week ago before my daughter was on the floor begging to die when she had to drink this awful liquid before colonoscopy and stay on the toilet all the time!
 
I agree with Dustykat about validating their feelings in that moment. To push those feelings aside means they are left to simmer and cause trouble, in my opinion.

Regarding tears around the time of the shot, it might be helpful to you both to have a set routine for doing the shots that includes

1)doing the shot in the same place each time - NOT in his bedroom and at the same time/day (we did Friday evenings just before bed so my son could sleep off most of the side effects)
2)a short relaxation exercise
3)a pain distraction tool (see below)
4) and something that helps your son feel a sense of control about the process - for my son this meant that he counted down and I did the shot when he got to 1. He would also tell me to slow down or speed up (we were using the injections not the pen)

At least these things were very helpful for my son.

The relaxation exercise will help reduce his anxiety and is likely to make the shot less painful (I assume that it is).

Examples of pain distraction tools are things like smelling a sharp smell like peppermint or spearmint, the smell of juicy fruit gum (supposed to be the best), ice on another part of the body, a pinch or other painful stimulus. These things have to happen at the same time as the shot - or virtually the same time. So if he's going to chew gum he has to open the gum and pop it in his mouth just a couple moments before you give him the shot.

I hope things went better this time. Hugs. It is hard on everyone.
 
Oh, I love all those suggestions Patricia56! Thanks so much. He definitely gets anxious so hopefully the relaxation exercises will help. The pain distraction tools sound very interesting too. He just picked out some candles today at the mall so maybe he can stick one under his nose next time!
 

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