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Coping with the Holidays 2011

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Jessica Elder
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Coping with the Holidays 2011

This discussion will be available to bereaved parents beginning on Monday November 14th and will be available 24 hours a day.

John Ott
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Hi Everyone:   My name is John and I lost my daughter Nikki in 2001 to a brain stem glioma.   For awhile after her death my wife and I could not face the holidays with family and took vacations away.  This year we are having family over for both Thanksgiving and Christmas. I know that many things will come up about Nikki and we will need to celebrate her life.   One of the ways I cope during the holidays is in writing a Christmas letter to Nikki.  I start in Nov and finish around Christmas.   In the letterI talk to Nikki telling her what has happened during the year.  I like to feel it is a two way converstation.    I tell her the warts and all.  I actually look forward to telling Nikki stories this year to family, something I had a hard time doing in the past.  

kenfolkman
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Hi, everyone.

My name is Kyle Rudgers, and my daughter Cathleen died from a PNET in July of 2006.  She was diagnosed less than a week after my early-January birthday that year and despite her struggle and fight, she never recovered.

The holidays have been the worst time of year for me for a long time.  Just before I turned 9, my mother was killed in a car accident coming home from Christmas shopping, so there has been a taint of tragedy since then.  Cathleen only had one Christmas and one Thanksgiving, and although with the misfortune of hindsight we can see symptoms arising, she was joyful and happy for the holidays.

Getting through the holidays is not easy, not for those of us who are bereaved, those who are fighting, and those who love and support the fighters and the grieving.  For the first few years, I told anyone who asked not to buy me any presents, that I didn't want to remember Christmas and my birthday because Cathleen's diagnosis came so close to those holidays.  My reasoning, such as it was, was that the only thing I wanted for Christmas or my birthday was the only thing I couldn't have.

But in time, things changed.  I have another daughter who adores the lights and ribbons on the presents and the holiday music and specials on TV.  Through her eyes, the baggage of the holidays doesn't exist, and I have to be careful not to prevent her from being joyful.  My wife and I show her pictures of Cathleen's Christmas and we talk about her, tell her that Cathleen is giving my second daughter the best gift of being a guardian angel.

Coping through the holidays is something that I endure.  It's probably not the best way to be, but by making the holdiays about chores - make the dinners, go to the parties, buy the presents - I remove much of the emotion from it (I find that to a certain extent it makes me more able to deal with people who become their worst selves in stores and parking lots, too).  I'm an emotionally driven person, so to let myself get wrapped up in what I'm missing means that I'm paralyzed for two months, and that's not good for my family or my surviving daughter.

So: the question is, what do you all do for the holidays? John, above, writes his daughter letters.  Do you send cards or letters, light candles for your child, or do you have another holiday tradition that soothes your soul and allows you to remember your child?  I'm certain that your healing mechanism is better than mine.

mysaiah
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Hello Everyone,

My name is Shakhanda and my son Isaiah was diagnosed with a brain tumor almost two weeks after Christmas 2009. The Lord called Isaiah home to be with him two days following my birthday in January 2010.

Christmas was rarely a holiday which we celebrated with many presents, lights, and music. However, with the expectancy of Isaiah's birth in December 2009, our family planned on gathering together to for Christmas to celebrate his arrival and start a new holiday tradition. Christmas and my birthday has became an association of the least celebrated, almost worst, ceremonies since Isaiah's departure. In May 2011, the Lord blessed me with another child who surely deserves the opportunity to participate in such holiday festivities.

Last year, Thanksgiving was very difficult to accept without my son.  Our plan for this year, prior to the birth of our daughter, consisted of going away from everyone (friends and relatives) to mentally and phyically grieve the loss of Isaiah. However, plans has changed, and I have decided to embrace the holiday with relatives. I will continue Isaiah's remebrance by journaling and candle lighting. The holiday's are often a time where others expect those to be full of joy and happiness. However, when a parent loses a child, holiday's rarely or usually never go back to the way they once were. Yet, spending time with relatives and close friends gently soothe the heart of the broken hearted.

 

John Ott
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Hi Shakhanda :     Going away during the holidays was our escape for awhile.    I always tell people that Nikki is the keeper of cats in heaven.    She loved cats and her favorite "Fig" is still with us but getting old.   The next bad day for us will be when Fig dies.    As you are doing we are again embracing the holidays.  God Bless.  

John

Donna Beech
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Hi, Everyone,

I'm Donna and my son Jonathan died in March, 2007, just after his 15th birthday, after a 4-year battle with medulloblastoma.  I don't remember my first holidays after he died, but I stayed busy since I'm music director in a church, and I did return to that shortly after Jonathan died.  Staying busy helps. 

Holidays definitely are tough, though.  I try to remain sensitive to the needs of my other son David, who at 16 has outlived his older brother........Does he want to celebrate Thanksgiving with friends, or with extended family, or at home? (We'll probably stay home and invite friends this year.) ........Which Christmas decorations does he need to see?  I always put out both Christmas stockings, for example, as I'll always be the mom of two boys.  We usually place a few tree branches on the gravesite, too. 

Planning ahead for each holiday, assessing the needs of your spouse and other kids as much as possible, is helpful.   At my very lowest points I remember that I'm not alone........that there are many other people out there who are also sorely missing their dear child.  And I am truly thankful for the many beautiful people that I've met through this dark journey........these people have been a beacon of light and hope and support through the darkness....... and we travel this journey together. 

I'm beginning to learn that joy and pain can co-exist.......that I can accept this hole in my heart and also live a productive, meaningful life.......that happiness and peace do return even as we journey from one milestone to another without our dear child here on earth.

kenfolkman
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It's an excellent point that joy and pain can co-exist.  I don't think any of us could get through without recognizing that. 

What's always caused me trouble during the holidays is that there seems to be an expectation that if you aren't joyful something is wrong with you.  We all know better - nothing is wrong with us, except that everything we know has been upended.

I, too, have found that surrounding myself with friends and family who knew Cathleen is a comfort.  The nicest thing is that we can talk about her, or not, but we all acknowledge that while she isn't with us physically, she's not far, either.  We can thus feel comfort in each other's company.

And, I'm lucky (or blessed, depending on your point of view) to have a child that survives for me to hold close...

Jessica Elder
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Thanks for sharing everyone. John, your letter writing is such a wonderful way to stay connected to Nikki and cope with the holidays. Shakhanda, I'm glad you've found a way to acknowledge Isaiah during the holidays, through journaling and candle lighting. Kyle, thanks for sharing your experiences with the holidays and how you have found a way to endure them for your daughter. Donna, your point about pain and joy co-existing really articulates how so many parents describe feeling. It seems like all of you view your surviving children as a source of inspiration to get through these difficult times. Thank you for all of the important and helpful posts so far-I hope you continue to read and share.

John Ott
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Wow.   Joy and pain can co-exist.    I never thought about it, but it is so, so true.  Thanks for this Donna.

John

jtlfund
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Hello,

My name is Jen and my son, Joseph, died in July 2009 of a brain stem glioma.  He had been diagnosed just four short months before he died and just 10 days shy of his 2nd birthday.  At the time of Joseph's diagnosis (9 days afterward) I gave birth to his little brother, Thomas, who was four months old when Joseph died.  Joseph was our first child.  This past May I had my third child, another boy, who we named Bryan Joseph.  He is now 6 months old, Thomas is 2 1/2 and Joseph would be 4 1/2.

I find the holidays very difficult.  This will be our third set of holidays since Joseph died which is hard to beleive since it seems like he was here only yesterday.  I still think about him almost every moment of every day.  I think the only moments that I dont think of him are when I an tending to something that requires me to be in the moment such as one of the other kids getting hurt or extinguishing an imminent problem of some sort.

As these holidays approached I began to feel as though I could manage them but now that they are upon us I am not so sure.  Like past years, I am feel so disgusted at how early Christmas decorations are out in stores.  Before Joseph died I never recall seeing them as early as I do now.  At times, it feels almost like the stores are conspiring to make me feel as empty as possible by littering their aisles with holiday paraphanalia.  

If this Christmas were going to be similar to our past two Christmases I almost feel like i could figure out a way to get through them mostly unscathed but, already, since this is our third Christmas without Joseph, I can see that people's and our family's expectations of us have changed.  Especially b/c we have little kids, I feel like people expect us to "celebrate" the holidays this year.  What I am realizing as this year unfolds is that I finally felt somewhat equipped to manage the holidays without Joseph as they have been but that won't be good enough b/c this one will be different.  SInce time has increased so have the demands of those around us and even some of our most supportive and loving friends and family members are making the incorrect assumption that are able to handle the holidays now.  That is just not so.

I don't know how I will get through the holidays.  Sure, there are things that I have done the past two years that I will continue this year (i.e. hang a stocking for Joseph and write him a letter on Christmas Eve to put in it) but as for the day-to-day challenges of the holidays, I am not sure how i am get through those.  My best guess is that I will hide out, away from the glitz of the stores, as much as possible. I willl only attend the most "required" celebrations and I will make my plans with family as much in advance as I can so that I dont have to mull over what we will do, where will do it and with who.  I will get a tree for my kids and I will decorate it (for them) despite not wanting to.  I will get them gifts and I will give them a small but warm and magical Christmas b/c they deserve that.  I will take them to sit on Santa's lap and bring a toy of Joseph's for them to hold in the photo.  I will put on my best face for others b/c, at this point, I have learned that most times that is easier than expressing how I truly feel.

Lastly, I will throw out every single one of those damn holiday cards that makes its way into my mailbox with people's smiling kids all over them saying, "HAPPY HOLIDAYS!"  I have become really good at spotting them now so, hopefully, I will be able to toss them this year before I even break open the envelope.

That's my plan for this year. Its a little "angry", I know, but I think that's ok.

 

Thanks for listening. Wishing you moments of Peace and Hope. Jen

 

Jessica Elder
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Jen,

Thank you for your honesty and for expressing how you truly feel. We know that you are not alone in having these feelings and I'm sure that your expression of these feelings gives others the permission to acknowledge how difficult the holidays truly are. Over and over we hear stories about how families feel pressured to feel, act or be a certain way during the holidays. I often hear that very few people stop to think about the pain parents endure during these times, and most do not fully consider how the pain changes the way bereaved parents perceive the holidays. Most people understand that we miss our loved ones during the holidays, but few people stop to think about how the happiest times of the year can turn into the saddest times for those who suffer the loss of a child.  It makes me wonder what, if anything, would make the holidays more tolerable for bereaved parents. I'm sure that not receiving those "happy family" cards would help! More awareness would be nice. I'm also happy that some of you have shared what helps you to cope with the holidays, and how you acknowledge your child during the holidays. All of you are amazing parents. You have been willing tolerate the most painful situations, and accept the most painful feelings, to make your surviving children happy during the holidays. It is touching to learn examples of how your dedication and love for your children and families empowers you to move forward during the most challenging times.   

kenfolkman
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Jen:

It's taken me a while to respond to your passionate and heartfelt post because I wanted to be able to craft a response that is appropriate.  My problem is, in many ways, I'm right there with you.

I've had awful associations with the holidays for many years, and my daughter Cathleen was diagnosed with her PNET shortly after the holidays, in early January 2006.  As she went through her treatment, we began to see in retrospect what were symptoms of her illness, including a trip to the emergency room three days after Christmas while we were on vacation.  Since then, I've always been skeptical and dubious about the holidays.  I soldier through for the sake of my now five-year-old Josie (with whom my wife was pregnant the whole time Cathleen was in treatment, and who was born three days after we buried Cathleen), enduring the specials, the bell-ringers, the tree and the lights.  I know that she gets an immense amount of joy out of the trappings and trimmings of the holiday so I only do it, really, for her sake.

If I had my way, I'd go as far away from Christmas as I could.  So I appreciate and understand where you're coming from.  This Christmas is our fifth one without Cathleen, who only had one Christmas and loved it.  I, too, hate the false cheer and the expectation that everyone should be happy.

In my bereaved parents group, we talk all the time about what other people say and how other people react to our losses.  We've come to the conclusion that we have to live our lives for the surviving kids and in honor of the ones we've lost, and those who don't understand can just piss off, to quote my British friends.  This sense of living for my kids - for Josie and for Cathleen - and surrounding myself only with those who understand is the only way I can get through this ardouous time of year. 

It's a stressful time of year for everyone, which is ironic in and of itself, but more so when you're grieving.  My only advice is to do what you're doing - keep the stressful events and stressful people at a distance, at least until after the New Year - and do what makes you feel right, both for the survivors and to honor your beloved Joseph.  Only handle what you feel you can handle, and the true friends will understand.

And know this: in no uncertain terms are you alone.  There is a community that we are all part of, that we wish we didn't have to join, but that is extremely close-knit.  If there's anything I can do to help, or if you want to shoot me an email if you need support, please do so to kylerudgers@gmail.com.

I, too, wish you those moments of peace and hope. 

--Kyle Rudgers

jtlfund
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Dear Kyle,

 

I really appreciate your response, thank you.  And yours too, Jessica. I thank you both for taking the time to right in response to my post. That means a great deal to me.

Kyle, I read your post (above) about how hard the holidays were for your ever since you were a child.  I am so sorry for your tragedy.  For tremendously different reasons, I too have always felt like the holidays are hard and sad.  Again, totally, for different reasons (my parents began a very very messy and long - 12 year - divorce when I was 11).

When Joseph was born I felt as though I finally got what I had pined for since I was a child which was a family unit.  FInally, I had a place where i could go, always, where I had the stability, security and happiness of a family and that was at my very own home with my husband and son.  Finally, I could craft a Christmas morning full of the things that make Christmas magical. I wasn't subjected to bitterness or agruing or one parent's attempt to outo-do the other with fancier presents.  Christmas, finally, felt the way I thought it was supposed to and it felt so good.  And so happy.  Joseph had just two Christmases on this Earth but they were exploding with happiness.  

So, I think that, now, aside from all of the obvious reasons why the holidays are devastating without Joseph, I feel extra bitter that the one thing I wanted, that one thing that I felt I was so close to having: A Family  - was also taken right along with Joseph.   Losing him shattered my life but it also shattered my dream of growing up to "right the wrong" of not having a traditional family.  I feel like in those two Christmases that Joseph lived I was so happy, perhaps too happy, and that something or someone found out and punished me. I am not sure how much sense that makes but, sensible or not, it does feel that way.

I feel pretty angry about that.  I try not to spend an abundance of time feeling sorry for myself about it but I cannot help but feel angry if I allow myself.  Why having a happy family has been so challenging for me and, for some others, it seems to happen so easily is so bewildering to me.  Just another injustice related to Joseph's death I suppose.  There are so many that it is easy to lose track.

Anyway, we are now 5 days into December and I haven't collapsed yet.  I consider that progress.  We'll see.

Thanks again for your response. Jen 

CalebIsMyHero
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Hi, everyone. My name is Angela. Our 5-yr old, Caleb, was diagnosed with DIPG on 10.10.10. He had his final Christmas with us last year. He died in my arms on March 25th of this year, so this will be our very first Christmas without him. It will also be exactly 9 months since his death on Christmas day.

I feel so conflicted with the myriad of emotions twisting and turning inside me. I am joyful that he is spending his first Christmas in Heaven. I am grieved because I selfishly want him here with me. I'm angry that cancer stole his life from us so quickly. I feel guilty because I keep wondering if I hadn't blown off some of the things I'd noticed earlier in the year, would he have had a better chance of survival or at least of living a few more months. I struggle with our decision to even treat the tumor because the steroids changed him from my sweet, loving, happy boy into a sullen, angry, hateful, "starving" boy I didn't even recognize. Could he have had a happier final 5 1/2 months if he weren't on so many drugs and going through so many procedures? Why did we even bother with the two surgeries in January when he was gone two short months later? I wonder sometimes how I am able to have so many days where I hardly think of him at all. Then there are days when I am crushed with grief and can barely breathe.

Every Christmas since Richard & I got married, we've purchased a new ornament for our tree with the year on it and most of the time a significant event commemorating that year. Several years in a row we bought the Make-A-Wish ornament, never realizing that one day we would be a family receiving from that organization. Last year's ornament was a heart with a snowflake on it that we had engraved with "Faith, Hope & Love." Since we never put up a tree last year due to travel, this is it's first year on the tree. Even though about 1/4 of the ornaments on our tree were made by Caleb, those weren't the ornaments that made me cry. The one that got me was the 2010 ornament we got that had a space to put a family picture in it. I realized at that moment that we'd procrastinated too long on getting a family picture done and any future family pictures would always be without Caleb. This year's ornament is a remembrance ornament that will have his name, date of birth, date of death & "Loved to Infinity & Beyond" engraved on it. There is a place for his picture in that one, but it just isn't the same.

Our other son, Caden, just turned 3 and has recently begun telling us at least once a day that he misses his brother. He's started having night terrors and is acting out. We just don't know how to handle his grief on top of our own.

And, if it wasn't bad enough that we've lost our son already this year (with the mountain of medical bills that comes with that), Richard's dad passed away 2 months after Caleb (unexpected trip from Dallas to south Florida), our A/C went out, the hot water heater broke & had to be replaced, 2 major water leaks, over $5k in vehicle repairs since both of our vehicles are over 10 years old - the truck looks like it's going to have to be replaced now, Richard's job ends Dec 31, and my BFF's husband died the week before Thanksgiving from colon cancer (2 months after diagnosis). So, Merry Christmas to us, right? When is it going to stop? I've had enough already.

I really just want to bury my head under the covers with some sleeping pills and not wake up until January. (Just to reassure everyone, I'm NOT going to do anything stupid. I have too much to live for and too many things to accomplish.)

I've kept up with the blog we started when Caleb was diagnosed. In the beginning, there were lots of comments from people and it was comforting to know people were praying for us. When he died, the outpouring of love was tremendous. But as the months have passed, the notes drop off, the comments stop, all is quiet. Life goes on around us and we are being pulled along for the ride. Babies are born, friends move on, people change. I'm slowly adjusting to life without Caleb, but it would be nice to hear that people are still thinking of us once in a while -- to know we are not alone. I know we're not alone, but sometimes it sure can feel like it. It's hard for others to understand what we're going through because they haven't been there.

On the up side, I know that God is holding me close or there is no way I would be in as good a shape as I am. I continue to lean on His strength, grace, comfort & mercy to uphold me.

Thanks for letting me rant a little.

Donna Beech
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Dear Friends,

I haven't been on here for three weeks, so I just read through everyone's posts, which are all so moving, beautiful, and deep.  I wish we could all physically get together for a weekend every other month, for support!!  It's truly an honor to have these wonderful online friends who understand so sincerely.

This will be our fifth Christmas without Jonathan; he would be a college sophomore now.  I,too, find great consolation in tending to our other son David, who will be 17 tomorrow!!!  This is a good year for him, and he seems to be happy to be alive, taking advantage of so many opportunities.  This makes me happy, and I'm so proud of the person he is becoming.

As we go through this holiday season, I think it's really important that we continue to trust our instincts --- retreating or withdrawing when necessary..... seeking out friends when we feel strong enough.....hugging our children and telling them how much we love them.

Angela, I'm very sorry about your dear Caleb.  The first holidays are definitely the most painful.  I don't really remember my first Christmas without Jonathan --- perhaps they got blocked out of my memory because they were so painful.  You ask so many questions, as we all do...........Early this week I drove two hours to walk on a NJ beach, and I found myself asking those questions......and I concluded that they can't be answered, but that, nevertheless, my job is to live my life with as much love as possible.  I'm glad that you realize that God is holding you close.  And please continue your "ranting" ---- after all, it's not "ranting" at all ---- it's sharing your profound story with others who understand and care!

Ken, I actually like your method of dealing with holiday details as "chores" (and, Jen, you seem to be implying the same thing).  All those 'chores' that you listed are things that we do for other people, giving them opportunities for happiness, even though we feel nothing ourselves.  In the long run, I don't think that's a bad thing at all, because little-by-little, happiness returns, even if just in short spurts at first.

Jen, thank you for bringing up those painful family photo greetings.  In retrospect, I guess I used them as 'teaching tools', because I only started sending them out after Jonathan was diagnosed and in treatment.  After he died, I continued sending them out (not last year, though).........my most poignant card was the one with two photos:  one of David and my husband and me, and a smaller photo of David hugging his beloved only sibling Jonathan in front of a previous year's Christmas tree.  I must have figured that one picture is worth a thousand words..........

Yes, how we love and miss our children.  For them, we continue on our journeys with as much love as possible.

Peace,

Donna Beech

 

 

Jessica Elder
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Hi Angela,

Thank you so much for sharing your experiences and telling us about Caleb. Please always feel free to share as much as you'd like-we are all here to listen. I also hope you'll consider joining us for a live online chat (next one is tomorrow 12-13 at 8PM EST). Your feelings and experiences are shared by many bereaved parents and I'm glad you realize that you are not alone. Parents often look back and wonder if there is something they could have done sooner to catch the tumor or to treat it more quickly, but in reality it sounds like you did everything a parent would and could do. No parent ever expects that symptoms their child is having could be related to a deadly brain tumor. And, these tumors are so aggressive and hard to treat that even catching them earlier would likely not change the course of the tumor. It's natural to ask these questions when anyone dies. People who lose loved ones in car accidents often say, "if only he would have left later, or went a different way." It's so hard not to ask those questions and wonder if the results could have been different, but there's only so much we can control in life. It sounds like you are a wonderful, caring and loving mother.

I'm sorry to hear about the sadness that Caden is experiecing. I'm sure you are doing a better job than you realize at comforting Caden. I'm also so sorry to hear about all of the difficult things that have happened all at once. You really aren't alone and I'm so glad that you are getting connected to the CBTF community. Thanks for expressing how you feel.

Sincerely,

Jessica Elder

Children's Brain Tumor Foundation

Jessica Elder
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I would like to share this Coping with the Holidays article (posted on the American Hospice Foundation's website) with everyone and am wondering what you think about it. It discusses the different feelings and experiences bereaved families endure during the holidays. It also offers a checklist of things to consider during the holidays and helps you to plan for the holidays. The list gives you the opportunity to think about what traditions you would like to maintain, adjust, or discontinue during the holidays.

http://www.americanhospice.org/grief/466-coping-with-holidays-and-family-cel 

 

 

mysaiah
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Hi John,

Sorry for the late response, however my computer is suffering from some difficulties which sometime prohibits me from accessing my information. However, I would like to extend a special thank you for your comment and yes, "going away for the holidays" is a way to escape and regain thoughts, peace, and embrace the love we have for our darling children. Afterall, I still struggle with acceptance and at this point the hoildays are not the same they once were. With our new child, Raven, I am trying to provide her with a memory of joy for hoildays without appearing grim, however, as the Christmas holiday soon approaches I find it so difficult. Lately, I have been focusing on how I will commemorate the birth and lost of Isaiah rather than how I will celebrate the holiday. Christmas especially because Isaiah's birthday and angel date was so close to Christmas and it has become one of my least anticipated holidays. I miss him so much...

mysaiah
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I completely agree with Kyle when others think that if we are not happy something must be wrong..." We all know better - nothing is wrong with us, except that everything we know has been upended. " "" That

That is so true...I have been learning to adapt moto

jtlfund
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Great article, Jessica, thank you. jen

jtlfund
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jessica, i keep getting notice that there are new replies to posts on this board but when i check i cant see anything new...am i doing something wrong? thanks! Jen

Jessica Elder
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Hi Jen,

That is because I'm in the process of having our IT department fix the automatic email issue (since no one was getting the email updates before after postings). I think we are getting some automatic email responses from the last few posts (the system is catching up from earlier). Hopefully, they will work correctly soon. I just got an update telling me that you posted this question so it might start working more smoothly soon. Thanks for bringing this up!

Jessica

Donna Beech
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New Year's Greetings to Everyone,

I'm thinking of you all and wondering how the holiday season went for you.  Hopefully you felt peace at least part of the time.  I do think that Christmas is the toughest time for bereaved parents.  This was our fifth Christmas without Jonathan, and we still had some tough moments.......along with some peaceful times, too. 

I hope your child is lighting your path in this new year. 

Blessings to you all.

Donna

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