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Crohn's Disease Forum » Parents of Kids with IBD » Letters from Silvermoon.


10-05-2012, 04:45 PM   #1
DustyKat
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Letters from Silvermoon.

There will be many here that don't know Silvermoon and her wonderful writings. I think often about Silver and the how she helps me through the dark days and rejoices with me through the good.

Scrapper1246's recent thread about how to respond to - I wish I was normal - reminded me of the letters that Silver posted in the past. You are godsend mate and I hope you don't mind that I have posted them here. BTW, Silver has IBD and was diagnosed as a child.

Spoiler alert!!! Get the tissues!!!

A Letter To My child:
My Darling child:
Today the doctor told me you have a bowel disease.
What does this mean, you ask?
Well I am not sure if I can describe it very well, but let me try...:

It means that your body's immune system, you know, the thing that is supposed to keep you from getting sick, has a glitch in it. They are not sure how or why it has happened...they just know that it has happened.

No, Sweety, you didn't get it from chewing on the wood in your crib, or holding on to your BM too long on that last trip we made to see grama...

No, you didn't get it from kissing Susie from down the street....

You didn't get it because you didn't eat all your broccoli for supper last week...

Yes, My Love, you may have to take pills for the rest of your life, but so do lots of other people. The medicine will hopefully keep you feeling a bit better until someone out there can find a cure....

It means that I am going to nag you to take your pills on time, and every day, and I am going to nag you to eat all the food the dietitions tell you to so you can stay healthy....

It means I am going to nag you to go to bed early and rest as much as you can, because getting tired will add to the problems of this illness. I know it's not fair that you have to be in bed earlier than the other children, but sometimes life sucks....

It means I get to hug you whenever and where ever I can, because I love you and you are so very special to me....soon enough you will be leaving to be on your own, so for now let me have my hugs....

It means there may not be thing you can do that other people your age will be doing, especially as you get older....like going out drinking all night, or taking up smoking. After you leave my house, you will have to make these choices on your own, but they are bad choices for everyone... just a little bit worse you you.....

It means I get to smother you because you are my child, and I love you.

It means you may have to be careful what you eat, because it may upset your tummy.... so no more pizza every Friday night.... maybe once in awhile, but not all the time.....

It doesn't mean that you can't go to school and off to univeristy and be whatever you want to be... a fireman....a paramedic...or even a doctor. It may mean you have to adjust your schedule a bit, but you can still be whoever you want to be.

It doesn't mean that you will never have a girlfriend or boyfriend....it may mean you have to wait a bit for that special someone to come along who understands better than most.

As you grow older, things will change. Some times you will feel really good, and be able to do all the things you want to do. But sometimes you will feel really bad, and just want to lay in bed all day because you are too tired to move. That is OK...I will still love you anyway.....

Eventually you will move out on your own, and I won't be there to nag you to get to bed on time, or eat your veggies when you can, or take all the pills you need to, but I will be only a phone call away.... and I WILL be calling you....

This is something we are going to have to work out together...and we will get through this together.... because I am your mommy, and I love you.....

If I could take your pain for myself I would. No mommy want to see her child in pain. But I can't. All I can do for now is love you and support you....and let you know I will always be here for you....

I will always worry about you; that is what mommies do... let me do my worring.... I know that you will be fine on your own.... but for now, just let me hold on to you and snuggle you and hold that feeling of never letting you go for awhile.... cause I am your mommy...and I am allowed to.

I have to go to bed now. We have to get up early to go see the doctor again. Just remember that no matter what happens along this journey, I will always be here for you...even if there are times you don't want me to.... We will get through this together. Try to be patient with me, and I will try to be patient with you.... and above all else, just remember that I love you....

always,
Your Mommy

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,
Dusty.
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10-05-2012, 04:54 PM   #2
my little penguin
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Thank you so much for posting those
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DS - -Crohn's -Stelara
10-05-2012, 05:01 PM   #3
Farmwife
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Tears and speechless.

I'll go hug Grace now.

Thanks for posting Dusty.
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I'm mom to............... Little Farm Girl 8 yr old
Ibd (microscopic)
(12/28/12),
dx Juvenile Arthritis
(12/13/13)
dx Erthema Nodosum
(8/13/14)
Bladder and Bowel Dysfunction
(10/14/13)
Ehlers-Danlos Syndrome dx (1/26/17)
Remicade started on (9/8/14)Every 4 wks
Azathroprine started on 10/9/15
EN/EEN- since (1/12/13)
Past Meds- LDN, Humira, Pred, MTX, Sulfasalazine
10-05-2012, 05:33 PM   #4
kimmidwife
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Oh my this made me cry! How awesome. Thanks for posting!
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Crohn's Dx'ed Sept 08
Allerg Imuran Sept 08
Fail Remicade Jan 09
Methotrex Oct 09-Aug 11
Pentasa stopped - nosebleeds
EENOct 31 - Nov 28th. Too hard!
Retried Remicade Dec 11
Stopped due 2 Anaphylactic Reaction
LDN Jan 2012-June 2014 Got My daughter back!
New secondary diagnosis: Gastroporesis Dec 2013
Lost remission June 2014
Started Entyvio April 2015. Decreased to every 4 weeks October 2015. Praying for remission.
10-05-2012, 06:19 PM   #5
Earnellzwifey
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That is one of the sweetest things I ever read. OMG Thanks for posting.
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Dx 8/31/ 2012 w/ CD
taking:
Remicade,Librax,Lomotil,Prednisone,Probiotic,
Iron,multi-vitamin, B12 injections, magic mouthwash,
Zofran.

32 medical conditions and counting. 22 pills a day with daily blood sugar testing and urinary cathing.

If you live in the loo , because you always gotta poo , then this is the place for you.
10-05-2012, 09:07 PM   #6
Jmrogers4
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Oh sure I have 3 teenage boys here and I'm bawling. Thank you anyway, that was absolutely lovely.
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Jacqui

Mom to Jack (18) dx Crohn's 2/2010
Vitamin D -2000mg
Remicade - started 1/9/14; 7.5ml/kg every 6 weeks
Centrum for Him teen multivitamin
Past meds: Imuran/Azathioprine; allopurinol; methotrexate; LDN; Prednisone; Apriso; Pentasa; EEN

Husband dx Crohn's 3/1993
currently none due to liver issues
10-05-2012, 09:17 PM   #7
Tesscorm
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Absolutely beautiful!

Thanks for posting, Dusty and thanks for writing, Silvermoon!
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Tess, mom to S, 22
Diagnosed May 2011

Treatment:
May-July 2011 - 6 wks Exclusive EN via NG tube - 2000 ml/night, 1 wk IV Flagyl
July 2011-July 2013 - Supplemental EN via NG, 1000 ml/night, 5 nites/wk, Nexium, 40 mg
Feb. 2013-present - Remicade, 5 mg/kg every 6 wks
Supplements: 1-2 Boost shakes, D3 - 2000 IUs, Krill Oil
10-06-2012, 02:11 PM   #8
Tink572
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Oh my. All teary eyed now. Thanks for sharing this.
10-09-2012, 05:21 AM   #9
Lewis,s mum
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Thank you .xx
10-09-2012, 02:37 PM   #10
Livilou
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Sniff, sniff...that was beautiful! Thanks for posting!
10-09-2012, 11:47 PM   #11
jmckinley
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Be still my heart! I will have to share with Ryan tomorrow! It will speak volumes after the day we had today!
06-12-2013, 04:58 AM   #12
DustyKat
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Bumping for the new parent's to the forum.

Dusty.
06-12-2013, 07:59 AM   #13
ChampsMom
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Whew... Sobbing...
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Shell

Mom of Champ (Alex)
Dx: CD April 2010
Meds: 04/25/13 switched back to Pentasa 3,500mg/day - Lialda brought lower abdominal cramps & exhaustion); 04/05/13 switched to Lialda 1.2GM 3 pills/day verse Pentasa 3,500mg/day, prevasaid 15 mg x 1/day, elemental iron, daily vitamin, calcium w/mag D, 50,000 mg Vitamin D/week, B12, B6 supplements, Cetrizine (for sinus issues)
Prayer
Priesthood Blessings
06-12-2013, 11:34 AM   #14
jaems
 
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Oh my gosh, I'm crying like a freaking baby!! Seriously. Thanks for posting. Now, I'm making my daughter read it!
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Jaems

--15 year old daughter with no true dx
--Hospitalized with an rectal abscess in 4/13
--Upper Endo and Colonoscopy in 5/13, 5 biopsies indicating excess bile in her stomach, inflammation in the terminal ileum and the rectum.

Current Meds:
-Azathioprine 50mg x 2
-Asacol 400mg x 12
-Budesonide (Entocort EC) 3MG x 3
-Nexium 40mg
-Zofran when needed

Current Supp:
-Fish Oil
-Daily Multi with added energy
-Probiotic
-5000mg of B-12

Failed Meds:
-Canasa Suppository 1000mg
06-12-2013, 12:25 PM   #15
CarolinAlaska
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That is really good.
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Carol
J's story: http://apathnotchosen.blogspot.com
*J, 18, Crohn's diagnosis 1-2013 (age13), controlled with 6MP.
Osteoporosis, Scoliosis, EDS, Asthma, Lymphedema, Epilepsy, Hla B-27 positive, gluten intolerant, thrombophlebitis, c.diff, depression, anxiety postural tachycardia/POTS and multiple food allergies.
06-12-2013, 02:18 PM   #16
Devynnsmom
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Thank you so much for posting that. I am sitting her crying like a baby. I am going to show this to Devynn. She thinks I am always nagging about pills, asking about bm's etc just to control her life *eyeroll* if only..
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Samantha, AKA Devynn's mom


Devynn (12 years old) was *unoficially* diagnosed with Crohn's disease in Dec 2009.
That diagnosis was changed to Ulcerative Colitis in Mar 2012.
Pentasa ASA Dec 2009-Mar 2012 (dosage tweaked a couple of times)
Mezavant Mar 2012- Nov 2012
Sulfasalazine-Nov 2012
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