Sad anniversary and needing a hug

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belleenstein
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Date Joined Feb 2007
Total Posts : 1010
   Posted 1/22/2008 9:03 PM (GMT -7)   
A few weeks back I shared the story about losing my daughter Sarah in a post from indigosunrise about what might have triggered her crohn's.

I was touched by the responses from you all, including zazucat and gumby and eljay.

I find myself today reflecting on the short life of my little girl -- Sarah Amanda was 28 weeks old when she died unexpectedly. An autopsy could find no cause for death and it was ruled a case of Sudden Infant Death Syndrome. Today is the 30th anniversary of her death and all day i have been fighting to stay silent when all I really want to do is say her name. It's now nearly midnight and, other than with my husband, i have maintained the discipline needed not to give in to the impulse. I did not bring up Sarah when I saw my mom this morning. Or explain the welling of tears that threatened to spill over during a therapeutic massage this afternoon. When my sister called this afternoon Sarah wasn't on the "what's up' list. And I've just closed the door after a visit with my dearest friend -- someone who coincidentally is the sibling of a SIDS baby -- and still no mention of Sarah and what I've been feeling today. Every time I stay silent I feel like it's a betrayal of my little girl, but I know that to speak of her has become a self-indulgence that just makes people uncomfortable.

Strength has always been my weakness.

And so before I put the lights out on this day, I just need to acknowledge that Sarah lived, was loved, and in her death brought me riches and gifts that continue to grow and multiply even to this day. I hope you can forgive me for dumping this on you, my on-line family, when I didn't have the courage to bring discomfort to those who inhabit my realtime world. But I really need your hugs from the heart tonight.

You all have my heartfelt thanks
Belleenstein:

30+ years living with Crohn's.


pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20576
   Posted 1/22/2008 9:24 PM (GMT -7)   
Awww....I have my own Sarah (Nicole) and I cannot even imagine how devistating it must be for you....I'm so sorry.

(((((((((((((((((((((((((((((((((HUGS)))))))))))))))))))))))))))))))))))


Be well :)
My bum is broken....there's a big crack down the middle of it!  LOL  :)


FitzyK23
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Date Joined May 2005
Total Posts : 4219
   Posted 1/22/2008 9:30 PM (GMT -7)   
((HUGS)) - I understand you not wanting to make your friends uncomfortable but you should share it with your husband. He is probably feeling the same way!! You aren't Irish are you? Us Irish tend to ignore the elephant in the room to avoid the uncomfortable conversation... until the whiskey comes out. If you are Irish, have a whiskey with your hubby to celebrate that short beautiful life because the Irish celebrate life when they mourn their lost loved ones. I hope you find some comfort tonight. Could you visit her and say a prayer or leave a plant?
26 Year old married female.  Diagnosed w/ CD 3 years ago, IBS for over 10 years before that, which was probably the CD.  Currently on Pentasa 4 pills/4x day, hysociamine prn, nexium, and ortho evra.  Good times!!!
 
 


athensgirl
Regular Member


Date Joined Apr 2007
Total Posts : 254
   Posted 1/23/2008 5:38 AM (GMT -7)   
Dear belleenstein,
 
When I was first diagnosed you were one of the first people who gave me so good advise, and I will never forget that.  That's why I wanted to send you a big greek hug, although I cannot comfort you.  Your daughter will always live in your heart, and no matter how many years will go by, you will always carry a part of her.  Mothers never forget, and what you are going through is natural.  The key here is not to try and forget, but to always remember!!!!!
 
Keep smiling,
Christina

indigosunrise
Regular Member


Date Joined Nov 2007
Total Posts : 497
   Posted 1/23/2008 5:42 AM (GMT -7)   

Bell,

My heart and thoughts are with you.  I cannot imagine the loss you have had.  If I could reach out and hug you I sure would!  ((Hugs!))

Know that you are in my thoughts and prayers. 

Take care and blessings from above,

Indigo

 


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 1/23/2008 7:48 AM (GMT -7)   
Awww Bellenstein I am so sorry that your heart is hurting so. Please know that you are in my prayers and ((((REALLY BIG HUGS)))) are sent out to you.
Been living with Crohn's Disease for 32 years.  Currently on Asacol, Prilosec 60 mg, Estrace, Prinivil, Diltiazem, Percoset prn for pain and Calcium.  Resections in 2002 and 2005.  Recently diagnosed with Fibromyalgia and doing tests to see if I have Inflammatory Arthritis or AS.


gumby44
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Date Joined Nov 2007
Total Posts : 4096
   Posted 1/23/2008 9:18 AM (GMT -7)   
Hi Ballenstein,
I wish I could send you more than a hug! I wish you didn't have to feel like you need to keep silent on this with those closest to you. Losing a child is a loss that eases with time, but is never ever forgotten, nor should it be. Maybe you can do something special in memory....say a prayer, light a candle, poem, do something special for someone...whatever has some meaning for you. It won't take the pain away, but it may help you acknowledge it for yourself. I miscarried my first baby after many years of infertility. I have an 18 year old and 14 year old, but I still at times think about what that baby would have been like. I'm so sorry for the loss of your precious Sarah, ( That's my daughter's middle name...I'll always think of you and your daughter when I say it!) Sending love your way....Gumby
49 yr. old female, diagnosed with Crohn's in small intestine and terminal ileum Sept-Oct. 2007
currently taking Pentasa 2750 mg- 9pills/day and on and off Prednisone for flares


Clcaj
Regular Member


Date Joined Oct 2007
Total Posts : 82
   Posted 1/23/2008 11:15 AM (GMT -7)   
I am so sorry for your loss.  There's not much more I can say, since nothing matches the pain of losing a child.  I hope you believe that she can still feel your love for her.  At least I believe that about loved ones I have lost, because it keeps me sane.  Even if you don't feel comfortable talking to your friends or your husband about her, you can always talk to Sarah in your head and I think she hears you.  May God bless her and keep her safe until you meet again.
DX: mild to moderate Crohn's for 34 years
Additional benefits: chronic anemia, B12 deficient, peripheral neuropathy, facial mylagsia, joint pain, underactive thyriod
Current meds: Colozal, Nexium, Entocort, Flagyl, steriod cream, monthly B12 injections, Neurontin, Synthroid, Effexor ER, pain meds as needed


ski bum
Regular Member


Date Joined Jan 2007
Total Posts : 451
   Posted 1/23/2008 11:56 AM (GMT -7)   
I'm so sorry Bellenstein.  We all handle tragedy and loss in our own unique way and I'm sure those who love you will respect and honor whatever way you choose to deal with your loss.  "Strength has always been [your] weakness."  I never thought of strength as being a weakness, but you may have a point there.  In the Jewish faith, we light a candle on the anniversary of the death of our loved ones and say a special prayer, called "Kaddish."  The candle burns for 24 hours and is a good time to talk and reminisce about the one whom we loved and lost.  I'm sending you my heartfelt hugs.
50 y/o F. CD dx'd Aug 05. Initially on Pentasa, then Imuran 125 mg. Started Humira (very reluctantly) on 10/24/07. Currently on Humira, Imuran and Entorcort. Hope to dc Imuran and Entorcort within one month of starting Humira.


stkitt
Forum Moderator


Date Joined Apr 2007
Total Posts : 32602
   Posted 1/23/2008 12:35 PM (GMT -7)   

Dear Bell,
I have only known you here for a short time but my heart goes out to you.  Our 3rd boy died at age 21 in a car crash only 22 miles from home.That was in 1990.  I found that people were uncomfortable after a couple of years out when I would bring up his name but I learned in therapy there is no time frame on grieving for your child.  There is not a magical day when you say ok, my baby is gone now and I will just let it be and go on.  I never tried to do that but like you I tried not to bring his name up while I would cry alone at home.

It is ok to feel sad and to reach out to people, we want to know about your Sarah.  She is part of who you are.  You are Sarah's Mother and what a special Mother God gave Sarah. Self-indulge, it is ok, give yourself permission to do that.  It is a need you have and if just saying her name makes you feel better we are here to listen.  Your Sarah will remain forever in your heart so whisper her name if it helps. (((((((((((((((((((HUGS))))))))))))))))))

Thinking of you with great empathy.
Gentle Hugs,
Kitt

 


 
Kitt, Co-Moderator: Anxiety ~ Panic  ~ Crohn's
*~* http://www.healingwell.com/donate *~*
It is health that is real wealth and not pieces of gold and silver.~Mahatma Gandhi~
 


karendee
Veteran Member


Date Joined Mar 2007
Total Posts : 1642
   Posted 1/23/2008 1:18 PM (GMT -7)   

((((((((Belleenstein))))))))

I think you should light a candle for her or say a little prayer to her. Maybe a ritual on the day of her passing could help a bit. I can only imagine how you must feel. I am glad you shared with us... that is why we are here!

I agree with Kit, talk about Sarah and then people will get used to it. they may have simply forgot and I am sure your family and friends would help you honor her.

Karen


 ...

Karen (Karendee)

Diagnosed w/ Crohn’s Disease  March 2007 On 150mg Azathioprine (generic Imuran), Pentasa, & Entocort (take zofran for nausea now)

Diagnosed w/  Fibromyalgia May 2007 also on Soma

Also have Arthritis, and feel like I am falling apart sometimes...


yogaprof
Veteran Member


Date Joined Apr 2006
Total Posts : 1665
   Posted 1/23/2008 3:53 PM (GMT -7)   
I am so sorry. thanks for trusting and honoring us by sharing your pain. big hugs, yp
48 y/o woman.  Diagnosed 4/06 after colonscopy, SBFT, CT-scan all showed crohns. 3 months later, after pred and remicade, all tests showed no crohns. December '06 had adhesions cut through a laparoscopy. Now just taking Glycolax, Ultra Fiber Plus, probiotics, and vicodin as needed. Experimenting with gluten-free diet per naturopath's tests.


C-Mom
Regular Member


Date Joined Jun 2007
Total Posts : 29
   Posted 1/23/2008 4:19 PM (GMT -7)   
Bless you, dear one, for being transparent about your grief. It is a difficult subject. I lost a baby through a miscarriage 15 years ago and I still grieve the birthday parties we never got to have, the room we never got to prepare, the siblings he never knew here. A strange melancholy comes over me every November when he would have been born and I cannot figure it out or feel better until I remember and address those very real feelings. I cannot imagine having held your baby and then having to let her go. I think there just must be no pain like losing a child. Know that people do care and do not judge you for grieving still now. I pray your heart will be warmed and comforted by the God Who hears you silently whispering her name.

LynnRN
Regular Member


Date Joined Oct 2007
Total Posts : 289
   Posted 1/23/2008 4:40 PM (GMT -7)   

I am so sorry for the loss of your beautiful daughter,Sarah. I know that being her Mom was a gift.

I am a Perinatal Loss Counselor along with being a Maternal / Child RN .We tell our Mom's who have had losses that there are many nice things to do in memory of their child,lighting candles,planting trees,holding onto special stones,and charm bracelets or necklaces.My friend loss a baby at 5months gestation,seven years ago,and she made a beautiful scrapbook,and has a charm necklace with her two living boys birth stone,then a angel with her son,Timmy's birthstone.

I think it's a nice idea for the parents to be able to be alone ,if possible on that anniversary.

Please let me know if I can do anything. I had two miscarriages,and it was very hard.

 

Love,

Lynn

 


CrohnsDaddy
Regular Member


Date Joined Oct 2007
Total Posts : 235
   Posted 1/23/2008 5:16 PM (GMT -7)   
From the bottom of my heart, I wish you all the best. Your daughter will not be forgotten. She lived, she loved, she was loved, and she touched you, and through you... us. God bless you both.
Just trying to be a "Regular Member".
 
Entocort 9 mg/day, Pentasa 4 gm/day, started Humira 1/22/08. I'm convinced that Prednisone is the root of all evil, and primarily responsible for global warming.


there's Hope
Regular Member


Date Joined Nov 2006
Total Posts : 145
   Posted 1/23/2008 5:17 PM (GMT -7)   
(((((((((HUGS)))))))))) Love and Light! Sending you prayers..
I am so sorry to hear about the loss of your daughter Sarah, I know that it must have been a very hard day to keep all of that in. I can relate, I lost a sibling when we were young and I sometimes keep comments to myself about him instead of sharing and making others feel awkward. I can not imagine the pain and grief you felt and still feel over this loss, I send you big warm hugs and I will do a meditation tonight in honor of your daughter Sarah.
26 year old female. Dx with UC in June 2003. Flare up in June 2006 led to CD dx.
Current Meds: Remicade, Asacol, Bentyl, Phenergan, Reglan, Ultram, Celexa, Seaonale, Seroquel, Fish Oil, Lacto and a Multi Vitamin

"There's Hope. It doesn't cost a thing to smile; You don't have to pay to laugh; You better thank God for that!"


belleenstein
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Date Joined Feb 2007
Total Posts : 1010
   Posted 1/23/2008 8:35 PM (GMT -7)   
Thank you all! I am overwhelmed by the compassion and wisdom contained in all your messages. What an amazingly diverse family we are. It is a privilege to share part of my life with all of you and I am humbled by our collective wisdom. <<<<<<<group hugs>>>>>>>> For Fitzy and others who, quite rightly urged me to share with my husband, I wanted to correct a mis-impression. My other half and I have always kept Sarah alive in our hearts and speak of her still quite naturally from time to time. Although her grave site brings me no comfort, it remains important for him to visit on significant days. Yesterday was one of those days and I joined him. But that's pretty much as far as the circle has extended -- until last evening.

I felt very ambivalent about posting because it is really attention-seeking, something I usually try to avoid. But what a gift your responses have been. I'm thinking back to the visit I had in my kitchen with my friend last evening when I let the opportunity to talk about Sarah slip away. I've just made a pledge to myself. The next time she visits, I am going to take her into the living room and introduce her to my daughter Sarah. There is a large portrait of Sarah and I hanging in the living room. It was taken less than a week before she died and in it we are staring at one another with the adoring expressions that only a mother and baby can share. Though my friend Peggy has seen the photograph many times, it wasn't until Christmas last year that I realized she mistakenly thought it was a shot of my youngest daughter, not Sarah. I didn't correct her that evening when she mis-identified the baby in the photo. I mean, how do you drop that into the conversation on Christmas Eve? But it's bothered me ever since and I'm finally going to do something about it.

For this new found determination, I have you all to thank.

Bless you all and thank you for sharing pieces of yourselves with me.
Belleenstein:

30+ years living with Crohn's.


smile1967
Regular Member


Date Joined Jan 2008
Total Posts : 174
   Posted 1/23/2008 9:17 PM (GMT -7)   
Hi Belleenstein, Even though I am new to the site recently and just mostly stalk all of you !! and I am so moved by this thread that I had to respond.

You are a beautiful mother and I cannot imagine the pain of losing Sarah. Your words were so well written, I actually felt like I was there with you today and can feel the pain so vividly. I am sending you all of my love and thoughts. What an amazing group all of you are...reading all of your replies..I am soo glad to be a part of this sharing circle!

Take care,
Shelley
40 year old wife and mother of two boys 8 & 10
symptoms since the age of 19
officially diagnosed with crohn's Nov.2006
meds: pentasa 500mg 2 x 3day
(just went off Entocort 3mg 2/day)
currently waiting for surgery date (TI resection)


belleenstein
Veteran Member


Date Joined Feb 2007
Total Posts : 1010
   Posted 1/24/2008 8:43 AM (GMT -7)   
Welcome to the forum smile1967. Thanks for your kind words of encouragement. Like you i have been touched by the warmth, wisdom and compassion flowing through this thread and I hope you continue to post, whether it is in response to a thread or because you have questions. The great thing about this forum is that even when a question has been raised many, many times before -- each time it appears in a new thread there will be new twists and perspectives offered. So jump in and join the crowd.
Belleenstein:

30+ years living with Crohn's.


smile1967
Regular Member


Date Joined Jan 2008
Total Posts : 174
   Posted 1/24/2008 11:01 AM (GMT -7)   
Thanks Belleenstein! Talk to you soon!
40 year old wife and mother of two boys 8 & 10
symptoms since the age of 19
officially diagnosed with crohn's Nov.2006
meds: pentasa 500mg 2 x 3day
(just went off Entocort 3mg 2/day)
currently waiting for surgery date (TI resection)


broomhilda
Veteran Member


Date Joined May 2007
Total Posts : 1488
   Posted 1/24/2008 8:45 PM (GMT -7)   
You have a beautiful memory engraved in your heart left there by your Sarah. Your time with her was cherished by you and her I'm sure. Hold fast to that memory until you meet again! Honoring her in a way that you find appropriate will ease the pain as this anniversary passes. Maybe it could be something reflective of a special private moment that the two of you shared. My thoughts are with you tonight and thank you for sharing her with us!
Dx'd Jan'06, 1st Resection 7/06, Predinsone, Humira, Imuran, B12 injections, Nexium. Secondary conditions: Psorasis, Acne, Fatigue, Joint Pain, Lactose Intolerant, gallstones, fibroid cysts, peri-menopausal.


Marie-Claire
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Date Joined Mar 2007
Total Posts : 900
   Posted 1/26/2008 12:26 AM (GMT -7)   
Bellenstein,.....I can't imagine this pain that you feel.....what courage and heart you have. With any grief, there is never any way 'around' it....you must go 'through' it somehow to learn and heal....but it seems that those who grieve must go 'through' it again and again. That you chose to share your grief with us is an honor and a priviledge....to witness someone's courage , vulnerability , strength is a blessing for all of us because our own hearts are made richer by it.
So many prayers to you and your husband. Your Sarah is never far from you,her spirit lives in your love for her.....how I wish I could remove this pain for you. I agree that a ritual of some kind might help...not to commemorate her passing but to celebrate her life.
My love and prayers are with you dear one.
Mary
50 yr.old retired RN,Crohn's D for last35 yrs..severe esophagitis, migraines,strictures,urethral stricture,depression,probable MS.
 
 


Sarita
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Date Joined Mar 2005
Total Posts : 2486
   Posted 1/26/2008 1:00 AM (GMT -7)   
Belleenstein, your line "strength has always been my weakness" really struck me. You really have some insight there. I can appreciate how difficult this anniversary must be every year for you. Thank you for sharing your thoughts about Sarah.
Co-moderator - IBS Forum


MMMNAVY
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Date Joined Jul 2006
Total Posts : 6927
   Posted 1/26/2008 12:07 PM (GMT -7)   
Hugs!
Forum Moderator 
We will find a way, or make one.-Hannibal (crossing the Alps in the 15th Century on war elephants) 
Make sure your suffering has meaning...


bentwistle
Regular Member


Date Joined Jul 2006
Total Posts : 330
   Posted 1/26/2008 5:46 PM (GMT -7)   
Belleenstein:
Through your words I have even more insight into the grief my parents experienced when my brother Matthew passed away unexpectedly at 4 months old (before I was born). He was my parents first-born, and they were unsure whether to have any more children after such a terrible loss. Happily they did go on to have 4 more children (and unfortunately a still-born child and a spontanious abortion). My mom was a loving lady, who doted on all of us, but she always held a heavy heart deep inside for her losses (which she conceiled well and that rarely showed, but could be detected on special days like a Birthday. She ended up giving up her religious beliefs because she could not come to terms with her losses (and unfortunately her minister's answers that it was "God's will" was not sufficient for my mother). I had to initiate any conversations about Matthew -like you, my mother was strong, and didn't like to burden others. I'm so glad she did talk to me though, because, even though I wasn't born when he died, I still feel I know about my brother who appears in the photographs. He will always be a part of the family.

Big Hugs!!! Thank You for sharing your thoughts!

Bev
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