Need answers or support?  Call 866-228-4673

Honoring and Remembering Our Children

20 replies [Last post]
Jessica Elder
Offline
Honoring and Remembering Our Children

Honoring and Remembering Our Children

Please use this message board to introduce us to your child and to share special stories or memories. What would you like us to know about your child? Parents are always looking for new ways to remember and honor their children. What do you do to honor and remember your child? Feel free to share a letter, poem, or anything meaningful.

 

kellysmom-Mary
Offline

 

 l       If you would like to meet Kelly, please click on this link to a short youtube video with a poem about her. 

.

http://youtube/MBN0n7okgzE 

 

Every May, Team Kelly participates in the Annie Ryan Run which raises money for the Midwest Children's Brain Tumor Center located in the Chicago area (they treated Kelly). Kelly's junior high school also honor's Kelly every year by holding a charity basketball game with the money raised going to children's cancer research at Chicago's Children's Memorial Hospital ..

A special memory:  Kelly had a biopsy of her tumor the day after diagnosis.  We waited many hours by her side for her to wake up after the anethesia wore off.  Upon awaking, she gave me a big smile, grabbed my hand and  kissed it over and over.  I then took her hand and kissed it once, she took mine and kissed it twice.  This went back and forth until finally I grabbed her hand, kissed it and said "INFINITY!"  She took mine and groggily said "INFINITY TIMES INFINITY!"  She had won the kissing game.  Later that evening, her vitals crashed, she had a stroke and was rushed into emergency brain surgery, was put on life support and died 12 days later.  I knew she had said her goodbyes and there were no words left unspoken between us. She knew I loved her infinitely.  She would love me forever..".infinity times infinity."  Those words are on her gravestone.

How lucky and priveledge I was/am to be her mom.

 

 

 

jtlfund
Offline

Wow, Mary.  I was so moved by your story and by your daughter. I hope those words dont sound as trite and annoying as they feel to say...but reading your post really penetrated my heart which surprised me b/c after losing my son to a braim tumor I find myself oddly devoid of emotion.   Thank you for giving us the gift of sharing your touching story.  I too will post a story soon to honor my son who would have turned 5 last month.  What a sweet little guy he was and I know we would have been a totally awesome 5 year old and big brother if he were here.

 

Jen

 

 

 

Jessica Elder
Offline

Mary, like Jen said...wow! Your memory is so beautiful. I was very touched by your story. I really loved the you-tube video as well. It was so nice to see Kelly and get a sense of her personality, what she likes, etc. What a beautiful girl! Thank you so much for sharing this. It's also nice to hear how Kelly's junior high school has gotten involved in fundraising for research, and honoring Kelly.

Jen, I look forward to hearing more about your son.

kellysmom-Mary
Offline

   Thanks Jen.  I look forward to heariing about your little guy.  I love to hear about the other brain tumor angels who are up there in heaven with Kelly.  Its my feeling that as we meet so do they, or vice versa.  I think they are responsible for bringing us together to help eachother.  Its not surprising that you have that emotional void...your hearts been broken in the worst way.  Your heart probably put a wall up that only our angels can penetrate.  How long has it been since your sweet boy died? Its been 3 1/2 years since I lost Kelly .   I find that whenever I feel an extreme emotion like anger or frustration about anything it leads me to grief.  My emotions can go on overload and things upset me for days.  I think this is a way for the grief to escape my body...to get out.  In the early days of grief I couldn't control it..it would just come on so strong.  But now, years later, I can avoid it...put it on the backburner.  I think I need to actually make time to grieve, so that I don't overreact to everyday frustrations and anger.

Anyways, sorry I got off on a tangent there.  Thanks for honoring my Kelly by reading and watching her video Jen.  When you can, post your story so I can honor your little guy.

love,

 

Mary 

kellysmom-Mary
Offline

Thanks Jessica !  You always find a way to help us honor our precious kids and help us heal at the same time.   It means more to us than you will ever know. 

 

love,

mary

jtlfund
Offline

My son, Joseph, died in July of 2009.  He was 28 months old and full of awesomeness.  He was diagnosed with a brain tumor on March 3, 2009, just four short months before he died.  On March 1, in leiu of having his 2nd birthday we took him to the E.R. because we thought he was dehydrated.  I was 38 weeks pregnant with our second child at the time.

On March 4, we biopsied his tumor and the results left us hopeful.  On March 12, I gave birth to a baby boy, Thomas, who we decided to name after Joseph's favorite toy, "Thomas the Train".  On March 13, Joseph turned 2 while still in the hospital.  Despite treatment, Joseph's tumor grew astronomically during those months and, in July, he died at home with us.  His little brother was just four months old.  Our hearts are eternally broken from the loss of our beautiful and amazing first son.

In May of 2011 we had our third son named Bryan Joseph.  Thomas kept us alive; Bryan brought us back to life.  Life is in a manageable place for us but it is rare that a moment goes by when I dont think of Joseph and we miss him terribly everyday.  

A wonderful memory of mine: On March 13, despite having had my second c-section the day before, I wheeled myself out of my hospital and through a conncecting corridor to the neighboring children's hospital where Joseph was inpatient.  Though I didnt actually beleive this, I was aware on some level that this day may be Joseph's last birthday (which, ultimately, proved true).  So, I put my newborn in the nursery, got a wheelchair and painkillers, and wheeled myself to Joseph's hospital room.  I took him (with help) out of his hospital crib and put him on my lap and him and I wheeled all over the hallways on the oncology floor.  He thought that ride was the "funniest" thing.  He had this very loud but inaudible hearty giggle that echoed in my ear as we zipped around the hallways.  We were gone long enough that my mom got worried and came to find us.  We were fine...just taking our time.  For those moments we were "lost" together in the halls: no doctors, no nurses, no medications, no people or family and, for those moments, no worries.  Just laughter and love and the wind whipping past us as I held him tight on my lap and moved my feet to speed us along.  I reflect on that moment often and feel so thankful to the people who arranged to let me give birth and the neighboring hospital after learning of Joseph's diagnosis.  It wasn't how his birthday was supposed to be but, nevertheless, it was precious and a memory that I will always hold dear to my heart.

Here's a link to a movie I made for Joseph's 4th birthday in 2011.  Last month he would have turned 5 and I just know he would have been an incredible little boy.  Come to think of it...he is.

 

http://www.youtube.com/watch?v=NIdHtW1wOZQ

kellysmom-Mary
Offline

Oh Jen,

What a beautiful beautiful little boy Joseph is.  I can see the joy on his little face in those wonderful pictures.  The song is so touching "I think of you as many times as I blink".  Tears streaming down my face I am so touched.  Thank you for sharing your angel Joseph with me.  Your memory is just as touching, maybe moreso.  I know his 2nd birthday wasn't the way it was supposed to be, but I can picture your sweet Joseph giggling with his mommy and that is such a beautiful sight.

love,

Mary

Jessica Elder
Offline

Jen,

Thank you for sharing this beautiful movie. I loved the pictures, and I love the idea of sharing videos so we can all get a sense of how incredible these children are. The quote at the end was so meaningful "no matter how much time, distance, place, etc. love endures." Your memory is also so touching. I love what you said about being "lost together" in the halls-I can really get a feel for how precious that moment was, a moment that the two of you shared together. I also liked how you described what Thomas and Bryan did for you and your grief (Thomas keeping you alive and Bryan bringing you back to life). You and Mary should both be writers-I am always amazed by how well parents articulate their grief, and help others to understand it.

I look forward to hearing more memories from parents. These are beautiful stories.

Donna Beech
Offline

At last I'm checking this messageboard, and what a beautiful one it is! 

Mary, what a wonderful video of your beautiful Kelly!  And I love "Infinity times Infinity" --- perhaps Kelly was speaking for all our children who left us too soon..........I like to think that! 

Jen, your video came up as 'no longer available', but hopefully it's the one that I saw last year for Joseph's birthday; I still have it.....thank you! 

My Jonathan died in 2007, eleven days after turning fifteen.  Lots of poignant memories.  I'll share the one of his coming home after attending his last choir rehearsal at the beginning of his hospice care.  I had asked him if he had any special music that he would like at his memorial service (with some trepidation, as I wasn't sure if this request was a good idea).  He sat down with pen and paper and came up with a list of 14 songs!!!  (Well, what did I expect; he's the son of two musicians!)  Two of those requests were the "Hallelujah Chorus" and Rutter's "For the Beauty of the Earth".  Afraid of not being to honor his final requests, I gently said, "Jonathan, those two pieces need a choir."  "I know," he said.  Sure enough, at his funeral, a choir of about 70 singers assembled to sing these selections.  And we continue to end each of our Annual Memorial Concerts (we just had our fifth) with his two big requests. 

Jonathan knew --- and knows --- his mom, and what I would need/could do to keep my focus in his absence.  And, in honoring his requests in each of our annual concerts, he continues to tell people to be thankful for this earthly life and to hold on to our belief in a fantastic next life where all our dear children are already experiencing a terrific time, totally healthy.  Our children are our guiding light.  And what bright lights they offer us! 

Peace and love, 

Donna

kellysmom-Mary
Offline

Donna...wow what an amazing son you have in Jonathan.  For him to be able to pick out 14 songs for his own memorial service as a gift for your remaining years on earth until you reunite in Heaven.  What an incredible young man!   Something tells me he has incredible parents too!  I like to think that as I write this, Jonathan and Kelly are meeting...sharing their earthly stories about us.  Thank you for sharing your memories with me.

 

love,

 

Mary

Donna Beech
Offline

Thanks, Mary!  Yes, I like to think of all our children together as one incredible, phenomenal family!  If only we could sneak in from time to time and observe them.......and give them a hug, of course.......

Donna

krice
Offline
Hi all...I am new to this group. My precious 3 yr old son, Thomas, passed away June 7, 2012. He fought medulloblastoma for 15 months. Thomas' smile always lit up the room and his energy always amazed people. During his journey with cancer we lived a very normal life because he never let his illness get him down. I have 2 other small children and I made sure that we all did everything together. If Thomas needed to go to the hospital, we all went. If he didn't then we all went to the playground. Thomas drew his strength from those around him. He just wanted to run around with all the other kids, even though sometimes you knew he wasn't 100%. I just wanted to make sure he did all of the things a healthy 3 yr old does. He even got to experience preschool for about 3 weeks before he died and he loved it. His death was a bit of a shock. We had only brought him to the hospital for hydration because he was not eating or drinking. They decided to admit him for the night just to keep him getting fluids and then at about 3am he had what we thought was a seizure (it wasn't, it was CSF buildup). He was sedated and intubated and after an MRI it was clear it was the end. He died peacefully in our arms. I am sharing this with you because the night before we brought him to the hospital he was zipping around the house on his scooter with a huge smile on his face. Right until the end he enjoyed life. I miss him terribly and my heart just aches. I know everyone understands and I am thankful I am able to share a little piece of him with you. Please visit www.caringbridge.org/visit/thomasrice to read our journey. Kelly
kellysmom-Mary
Offline

Oh Kelly what a beautiful boy!!  Thank  you for sharing Thomas with me.  What an incredible little boy...seeing the pictures of him eating his sandwich as he is getting his chemo!  I know he was a joy in your life and a piece of heaven on earth.  I am sure he is spreading that joy with all our angels in heaven as I write this.  I am so sorry you have to go through this.   Remember, you are not alone.  There are so many of us grieving mothers out there and together we can get through this journey.  I also belong to a yahoo group called PBTAngels (Pediatric Brain Tumor Angels), and together we listen and help eachother daily through emails.  If you'd like you can join this group by going to http://health.groups.yahoo.com/group/PBTAngels/    lov    

The online chats here are also wonderful.  Take care of yourself in these early days of grief.  Don't look too far ahead...one day at a time.

 

lots of love to you,

 

Mary, m/o angel Kelly forever 12

Ala Aslo

krice
Offline
Thank you, Mary...I feel so lucky to have people like you to turn to. I will most certainly join the yahoo group.
Donna Beech
Offline

Dear Kelly,

I'm so sorry about your beautiful little boy Thomas.  I just read through your CaringBridge site and looked at your wonderful pictures.  It was such a short cancer journey that Thomas had.  I love your last sentence:  'I am a better person because of my beautiful little boy.'  We parents would gladly give up anything to have our children back.....but, yes, we are all definitely better people because of them.  Thomas is in terrific company now, with all our dear children........I can picture our children taking turns playing with him and showing him how fantastic heaven is!

My son Jonathan had medulloblastoma, too.  He was older, though (age 15 when he passed away five years ago), and had a longer cancer journey (4 years).  He did well with all the standard treatments, and we always had plenty of reason to hope.  We learned that the hope never ends, even when the worst that can possibly happen, happens.......our hope has transformed into hope in a beautiful next life where our children are healthy and happy......and we hope that one day we'll be together again. 

Meanwhile, I feel that Jonathan is always with me.  And you will also come to feel Thomas with you everywhere.  Our children's love surrounds us constantly.  And there are many earthly people, too, holding you up with their love. 

Please remember that you are not alone.  There are many of us who have walked this worst imaginable journey, and we're here for you.

Take care.

Donna Beech

krice
Offline
Thank you, Donna. I agree that our children are all happy, together, and enjoying their new world. Thomas' journey was quite short, but his quality of life was amazing. He, too, did fantastic with all of his treatments. I find comfort in this.
Wynnie
Offline

Hi-I am new to this group.  My son, 16, was diagnosed with medulloblastoma in November 2010.  He went through the standardard chemotherapy/radiation and then more chemotherapy. On a check June 2012, cancer cells had returned in the spinal fluid.  The cancer is a group 4 and there is no known treatment.  Dr's state 6-9 months but they really don't know.  My depth of grief is so very raw.  I would like to make the time left for him memorable and delightful.  Thanks.     

Jessica Elder
Offline

Wynnie, thank you so much for sharing with us. I'm so sorry to hear that you are going through this. If anyone has any thoughts to share for Wynnie, regarding making the time left with her son memorable and delightful, please do. Or, anything related to getting the support she might need or want during this time...Wynnie, please don't hesitate to contact me at jelder@cbtf.org if you would like to be directly connected with a bereaved parent to discuss his/her experience.

Donna Beech
Offline

Dear Wynnie,

My deep apologies for not responding sooner.  Your post came the day before we left Camp Sunshine for home, and then we got immersed in college visitations for my son David. 

I'm so sorry about your son's recurrence.  The same thing happened to my son Jonathan --- medulloblastoma, standard treatments, good prognosis, then a recurrence in the spinal fluid ten months later.  The recurrence was even worse for him than the initial diagnosis ---- Within an hour of hearing it, he was literally sick, unable to sit up or stand (He had been perfectly fine before that.).  The doctor told us he had less than two years; indeed, he passed away one year and eight months later, just after his 15th birthday.

The doctor also told us that Jonathan had lots of life ahead, and that we shouldn't talk about dying.  And so we didn't; we were so numb with the news, that we just wanted to be led.  The doctor was right --- Jonathan had a wonderful year-and-a-half.  We took our Make-a-Wish Alaskan cruise that summer, and the following summer he really wanted to go to Montana, (He was remembering his fifth-grade report on that state.) so we did.  He kept going to school, even through his first month on hospice (He was on hospice care for three months; those people were truly wonderful.).  Whatever he wanted to do, we did. 

Yes, it was so so painful for my husband and me.  Every day was extremely difficult.  And, thinking ahead to the time when our other son David would lose his only sibling and best buddy --- unbearable.  So I put aside my pain, and focused on how to make Jonathan's --- and David's ---  remaining time together as beautiful as possible.  And there was, indeed, much beauty in those dark, dark months.  And much love. 

And hope.  As a dear friend kept saying to me through those final four months:  Never ever give up hope......If he makes it, that's great........if not, he's going on to something much better than we can possibly imagine.

Take care.  And remember that you are not alone.

Donna

Wynnie
Offline

Dear Donna,

Thank you so much for responding. I am sadden to read about your delightful son, Jonathan.  How you must have cherished those times and moments!

Shortly after the tumor removal, I recall asking the PA if Collin would be okay.  I was told to plan for college and the future.  So, without thinking twice, I did.   I was not ready for the diagnosis in June '12.

So much of our general conversation is geared toward the furture.  I plan to make a conscious effort to continue this and have hope. 

I am taking temporary leave in my job and going to focus on  my teenage children.  I have a daughter in college and son in high school.  Yes, whatever he wants to do, we'll do.

Thanks for everything,

Wynnie       

©2009 Children's Brain Tumor Foundation.    1460 Broadway, New York, NY 10036    (866) 228-4673    info@cbtf.org

Privacy Policy   |   Site Map
 

X
Loading