Loss of a Young Child

[mamabets]

For Foreverchanged- I remember seeing "Foreverchanged" here for the first time, and I thought my God, if that isn't the truth...For me, personally, forums as such have not really been part of my personal journey here- I remember meeting "Kagansmommy" and for whatever reason, felt so immediately drawn to her as well. Just because Danny was 25 years old and Kagan was just a little guy, doesn't mean to this grieving heart, that I don't "belong" on this forum. I love you all and my Danny loved this world and continues to light up my lonely nights with visiting all of the forums here. Care4U is a gentle, caring soul who, by the way, for whatever it may be worth, reminded ME of who Leslie was!!! May or may not be of any matter, but forums do not really matter to me, once you have lost a child and I for one, have welcomed her gentle help into my life. She, Care4U has been a definate positive for me, if for no other reason than I sought her friendship, and she has listened. I needed no "valadation" from her, as Danny leaves signs continually- However, when I have run scared, Tammy has been able to coach me back into the reality of this- She gains nothing from this than her hope for us. I love every person here.... My most intimate feelings can ONLY be brought here, because this is where they all get it, and my Danny clearly and absolutely lives on. I have shared pictures that prove this with many and when I think of little Will Reeve right about now, who is hoping for hope as his salt of the earth, celebrity parents, have both left their cruel world, I PRAY that all forums would and could welcome him here one day as he too, tries to find his way... I PRAY that he joins us here one day, as my Danny was a huge Christopher Reeve/Superman fan, for the very obvious, miraculous reasons... I "see" them sailing together and reading books about lighthouses....Why, I can't explain it- I just feel it and see it and am proud to share these things here...Anytime, anywhere!!! xoxoxomamabets

[missusarah]

For anyone that cares to read Ecclesiastes 9:5 & 6

Psalms 146:4

Deuteronomy 18:10-12

[missingchris]

For anyone who has little ones who lost a brother or sister: I came across 2 wonderful books. One is "I Know I Made It Happen" by Lynn Bennett Blackburn.

The second is " The Empty Place : A child's guide through grief" by Roberta Temes, PHD.

Both are simply written, neither should offend anyone's beliefs. I know they've helped my 6 year old son ,who watched as his 17 year old brother drowned when he was only 5.

I hope these can help someone out there. I'm eternally grateful to the person who found them for our family.

God Bless,

Becca (Chris' Mom)

[lydiasmommy2002]

I lost my only daughter only 3 weeks ago. Lydia was my entire life, my everything, my reason for being. She was the most beautiful, intelligent 3 yr. old that I've ever known and will ever know. I miss her more and more everyday. I'm so confused right now and I don't know what to do. I'm angry at God for all of this. I'm angry at myself for being so angry. I can't remember most of the day of the wreck, only bits and peices before it happened. I have panic attacks when I see the med flight people come into my restaurant. I want to scream at them and ask them why they can save so many people and they could'nt save her. What hurts the most is I was blacked out during the whole thing. I don't know if she cried for me or if she was scared and suffered. If anybody has any advice for coping please,please let me know.

[jonnysmom2]

To Lydiasmommy2002: I'm so sorry for your loss! I understand your pain - I lost my 4 year old son two months ago. One thing that helps me is going to church. We never went that often before - it was a hassle getting three kids ready that early, my husband liked to sleep in, and keeping three kids quiet that hour was hard. Now my two kids and husband go every Sunday. I feel like I'm in God's house now once a week and therfore closer to Jonny. We sit in the very back and I cry all the way through the service! Sometimes I feel like it was a cruel trick from God - to give us our little boy and then take him away. But then I think : would I have been better off not knowing my Jonny or have him knowing I would only get four short years? I pick having my son if only for a short time. I believe Jonny is in Heaven now as is your little girl. I know I will see him again someday. I'm not scared of dying anymore. I also found a book that helped. Its called After The Death Of a Child by Ann Finkbeiner. It talks about different families and how this affected their families, dealing with guilt, anger,their marriages etc. Being with my friends and family helps too. I pushed everyone away at first - I was so angry. I still am angry and I cry everyday. I'll never be the same happy person I used to be. I don't want my girls to remember me as being bitter so I try to smile for them and make life as normal as its going to be. I hope this helps you as one grieving mom to another.

[missingchris]

Lydiasmom,

I emailed you yesterday, I hope you got it. My heart bleeds for you.

Chris's Mom

[lydiasmommy2002]

Thank you missingchris. I will keep your advice in mind everyday. I'm so sorry it took so long to reply. I have a hard time keeping up with things. My heart bleeds for you as well along with everyone who has been or could be where I'm at.

[firemoon]

It been allmost three years now the I lost my son; Amadeu. He was a handsome, wonderfull ever loving 12 year old boy who was loved by everyone he ever met. More than 200 people came to the funeral and that showed me of the importence of his short life. He died of a lung& heart disease called PPH. Very rare so why this angel? I still miss him terribly, his death drove the family apart and I feel quite alone. How I miss the boy with the sweetest voice I ever heard... How long before this pain goes away? I'm writing from Denmark, it is far away but I have found comfort in some of the threads, nodded my head in agreement to others and my heart goes out to those of you who have recently lost a baby, never mind the age, course I know how raw, how fragile you feel right now, how the pain inside just make you wanna scream out loud, again and again. Apolgies for my english abilities but know, that to me it feels like comming home, now that I finaly found this place. Thank-yous from Gabriela

[earhdragon]

hi all

i need chat with somebody out of the family. this very about as all know. i'm not good and on doing this suff i'm slip words and can't spell. but the best can. i lost 3 childrem in a car assicent all my child. i was driving the car. we went off brige in to water. my child were 10 4 or and 16 mouth. my mind is to mess up right now don't know sometime do know what wrong to right. my children my life. I was stay mom. I lost them in nov of 2005. I don't what with myself. my husband just got new house my husband new job. he just the job before the kids dies. we were going to moving but wait on the kids to get out to school. so did jet. but the kids dies we went on moved in with friend up there were my husbaand was we found us house. Well to start but can't because I some keed coming up. and I also had my toube tie. can't anymore kid in less in revice. i'm sure want to that. I don't what want. but have a mother law that want get done now. I'm getting up there in age yes but 34 older women baby to the 50's now days. i want to work little bit and i want lost weight before have other i'm sure want too. I want to be happy before have a baby. I want that baby to happy i'm not happy that baby happy. if what heard i'm sorry don't what do any more. also mother law how to do my house. i'm trying to out this holes.

[missingchris]

We're here to listen. What a tragedy. Our prayers are with you and your family.

[firemoon]

Earthdragon : My heart cries and pray for you and your family...I'm so very sorry... May the stars guide your children home.

[kirksdad]

Sami, I am so sorry, there are no words that can take your pain away, I know. These beautiful spirits, these wonderful gifts come into our lives sometimes for just a moment and the love we experience is just beyond human comprehension. To have one's child for only such a short time leaves such an open pain in our hearts for such a long time. I know it is so very hard right now and don't worry about crying your eyes out, we all do it for a long time. I do know the other children in the family hurt also, being 3 means the understanding is hard to come by, but the way your son's life has changed will be noticed greatly. We had such a hard time after our son's death dealing with our daughter. He was 17 and she was 14 so where I am coming from and where you are at are right now at opposite ends of a great divide. I understand the pain, I understand the hurt, but you have just lost a baby and there is nothing that I know to understand totally your feelings. Just know in time the pain does soften and your love for your little Ben will never diminish. Your remaining son will need you, your love, I know that right now you don't know how that is to happen, but it will, give it time. Being into this terrible grief for only a couple of weeks is hard, it is the worst time of a parents life. Just know this is a good place to talk. Jim

[foreverchanged]

Sami

Your story touches me so much that I am nearly speechless. There are no words to describe the things that a grieving parent feels. It touches the physical, mental and spiritual parts of us. You are welcome here with open arms. It just saddens me that another parent is going through this living nightmare. Just know that you are not alone.

I am so glad you were holding your son and singing to him.

Just cry when it comes. And, don't worry. You will be able to mother your three year old, again. It just takes time to pick ourselves up.

[kirksdad]

I hope that tomorrow finds everyone ok. I say ok because it is so hard to get into the holidays as they come and go each year. I know that Easter for us use to be such a wonderful holiday. When the kids were little and even as they grew we still had Easter baskets, Church, and a nice Easter dinner. Now it has gotten to where we do go to church, but the other things that use to be nice, and I am sure still would be if Kirk was alive, have fallen by the wayside. Christmas we have been able to endure because of such a change in the way we celebrated it. Maybe someday that will come with Easter, but it hasn't as of yet. It is just another day that I wish could be different.

I hope some of you are able to have even a good time with family tomorrow and be able to celebrate, but I know how hard that can be. I guess as the years go by we come to our own version of the new way things are going to be. Sometimes it can come quickly, sometime it takes time. Which ever place we are all at the is ok. I hope that tomorrow is ok for everyone, also. Happy and Hopeful Easter.

[zoesmomma]

My 2 1/2 year old daughter has been gone three weeks today. Easter was not pretty. i wanted to post the details of her passing but another time. Right now I will leave it as she was healthy saturday and died unexpectedly monday of complications from illness. I am still at a loss.

[kirksdad]

Zoesmomma, I don't know what to say, this is so devastating to a parent. To have such a thing happen is not even, ever, going to be understandable. You are so fresh into your grief and mourning. I can hardly even remember the happenings during the first year and the weeks after are a blur. Your heart is breaking and hurting as much as anything you have ever or will ever experience in your life. This is a good place to come and just write about ones feeling and what happened. Sometimes we find others that have gone through similar experiences. Again I am so very sorry for the loss of your little Zoe.

[Guest Guest]

hi. i lost my baby boy 12 days ago. he was diagnosed at 9 months old with Atypical Teretoid Rhabdoid Tumor (ATRT) a rare and aggressive cancer with no cure. He had surgery to remove as much of the tumor from his brain as possible but only could get part of it as it involved the brain stem. my precious little Ben went through 2 types of chemo and countless other procedures. But in time the medicines just stopped working. the tumor were so aggressive. He was in a lot of pain. sometimes so much pain he would not even cry, but just kind of hit his head. but he always had smiles everyday. for 6 months. till the day he died. he was home. he was on pain medicine. and the night he died i was rocking him in his room and i knew. and i sang to him. and his breathing got shallow and laboured. but he held onto my finger so tight and just minutes before the end my baby boy opened his tired and sick little eyes and lokked at me and said "mama" and then closed them. and then he took his last breath. but i kept rocking him and singing softly. i had vowed shortly after he was diagnosed that as long as our baby boy was smiling then i would not shed one tear and i would smile right along with him until he took his last breath. and that was 12 days ago. my precious 15 month old baby boy Ben died in my arms and now the pain is unbearable... there are not words enough to describe this. today has been very bad. sobbing. i sleep little bits in his room rocking in his chair that i rocked him in. i look at his crib. one of his binky's are still in there. his favorite stuffy is in there. one of his blankets i hold onto. it smells like him. i dont know how to do this. i have a 3 year old son. i cant even mother him now. he is at my in laws. i ache for my baby boy. i am sobbing so much i have to stop typing i cant see.

thanlks for reading.

Sami...Ben's Mama

[Guest Guest]

I am so sorry for your loss Sami..

I hope you are doing okay.

MammaJ

[Guest Guest]

MammaJ,

I emailed you.

MammaK

[Guest Guest]

hi this is my first time in any chat room. it is to bad it has to be this kind of a chat room. first off, i would like to offer my condolenses to everyone who has lost a child. unfortunatly i know how hard this is. my daughter lilia has been gone for 20 months and i have to say, i don't really feel like it is getting easier. the strain that something like this can have on a family is almost to much to bear, especially when you are trying to deal with the loss of our most precious gift our child. i have another daughter who is twelve now, she was 10 when the accident happend, and i also have a son that is 9 months, who was born almost a year to the day my lilia died. this child was born into a mess, a mess left behind after the death of our daughter. i don't know the stories out there, i don't know if anyone else has faced the same kinds of struggles i have, and i tell you i would love to get a mans perspective on this. after our daughter died, my husband kept saying we had to stick together, we have to help each other through this, and i really thought we would be able to. then 3 to 4 weeks later he got so angry, and suddenly everything was my fault. i was a bad wife, a bad mother, and it was my fault our daughter was dead. anything mean and nasty he could say to me he said. later that night i found him with another woman. my 2 worst fears had come true within weeks of each other. i have spent the last 19 months doing everything i can to keep my family together, i am trying so hard to salvage what was left behind in this devistation and sometimes i don't feel like i was even able to grieve my baby the way i wanted to because of everything else. i'm trying to do what i think is right for my family, my children and even my husband. even if it means i have to endure this pain on my own, i am determined to see my family through this. my lilia was 18 months old when she drowned, is there any one out there that has time to talk to me. i could really use a mans perspective on this.

[kirksdad]

Guest, I am so sorry you haven't been written to before now. I have been busy at school and just haven't been able to get on like I want. I have to say that the loss of a child brings out all the things we don't ever want to see. It is so painful and we have no idea the change that it will bring or the heartache it will cause. What has happen to you is terrible. I am so sorry that your husband is feeling the way he is, there really is no excuse for his behavior. You are hurting, mourning, grieving, also. Relationships take a turn for the worst at times when something so destructive happens. There is no explaining the death of a child, the circumstances, the emotions, the way human nature takes it course. One person will act out so differently from another. We all have our own feeling and reactions and unfortunately one can react with as much grace as one can muster or one can go over the deep end. In the case of child loss either is possible and both can be explained.

I hope your husband can see the errors of his ways, but staying together sometimes is a lot harder than trying to come to another solution. I don't know your circumstances, but it sounds like your husband needs some help. The sad thing is he will have to understand that before he can get it.

This is a good place to talk, write. I know when I first lost my son I looked for a place I could just place my thoughts. In the beginning I didn't get a lot of people responding, but I kept writing, it really helped. Jim

[ajcsmom]

sorry if this is in the wrong place. I have subscribed to the beyond indigo newsletters a while back and havent recieved any, is there a problem with the newsletters or just none being sent out?

thank you, Carol

[kirksdad]

Carol, I am in the process of starting it again and hopefully this month one will go out. I did it for a couple of years and then I just had too many other things going on to continue, but I have missed doing it and will try hard to get it out soon. Jim

[TylersMama]

I know it's been ages since I have posted here, but I wanted to share this beautiful poem in memory of my precious son Tyler, was died at the age of 3 years old in Oklahoma from a farm tractor accident on July 11, 2000. I can *see* him doing this

A Mother's Day Wish From Heaven

Dear Mr. Hallmark,

I am writing to you from heaven, and though it must appear

A rather strange idea, I see everything from here.

I just popped in to visit, your stores to find a card

A card of love for my mother, as this day for her is hard.

There must be some mistake I thought, every card you could imagine

Except I could not find a card, from a child who lives in heaven.

She is still a mother too,no matter where I reside

I had to leave, she understands, but oh the tears she's cried.

I thought that if I wrote you, that you would come to know

That though I live in heaven now, I still love my mother so.

She talks with me, and dreams with me; we still share laughter too,

Memories our way of speaking now, would you see what you could do?

My mother carries me in her heart, her tears she hides from sight.

She writes poems to honor me, sometimes far into the night

She plants flowers in my garden, there my living memory dwells

She writes to other grieving parents, trying to ease their pain as well.

So you see Mr. Hallmark, though I no longer live on earth

I must find a way, to remind her of her wondrous worth

She needs to be honored, and remembered too

Just as the children of earth will do.

Thank you Mr. Hallmark, I know you'll do your best

I have done all I can do; to you I'll leave the rest.

Find a way to tell her, how much she means to me

Until I can do it for myself, when she joins me in eternity.

JODY SEILHEIMER

Heartfelt Words by Jody

In Memory of Her Son, Cory

***************************************************

I hope you all have a peaceful Mother's Day

[foreverchanged]

Tyler's Mom --

I can see my little boy doing this, too! What a beautiful poem!

I will be starting a website within a month or so. It will be on death and dying. I wonder if there is any way that I could get permission from the author of this poem to put in the poetry section?

ForeverChanged

[TylersMama]

Foreverchanged, Try Googling her name or the name of the poem "Dear Mr. Hallmark " and you may find her that way to ask her.

[Kelly]

Beyond Indigo's Remember Pins & Bands

Since I founded Beyond Indigo in 1997, people from all over the world have visited this website in their time of need. Visitors to Beyond Indigo have requested a symbol to display to show that they are grieving. In the past, mourners used to wear a black arm band or wear black for a year to symbolize their loss. Today, times have changed but the intensity of grief remains the same, and people's need to have their grief acknowledged continues. In response to our clients' request, we are introducing the Beyond Indigo pin and bracelet to reflect a person's loss in a tasteful way. The money from the sale of these pins and bracelets will help fund the website so that Beyond Indigo can continue to provide grief support for people worldwide. To order this pin and braclet please visit http://www.redjetmedia.com/pins/special.htm

[Artina]

Kelly,

What a fantastic gift for us to wear. Thank you to BI for thinking of something for Beyond Indigo grieving parents to share with the world... without ever saying a word.

Thank you, Tina

[Artina]

Tylersmama,

I remember you and Tyler. I too visit less and less. Thank you for sharing that poem with us...

Peace to you, Tina

[Guest Guest]

Hi, this is my first time here and as it is Sunday morning I don't have much time to write. But, I came across this site this morning as I was trying to remember my eldest son's favorite things. I'm not sure what age constitutes a young child. I loss my eldest son, at the age of 8, in 1990 of a gun shot wound by a caregiver. My heart broke and I thought I'd never want any more children. And, here I am now in 2006 with my 8 year old son and 6 year old daughter. As my second son is turning 9 very soon I suppose that is what has brought up all these feelings of hurt. preparing for that 9th birthday that never happened for my eldest. My second son has been ill since birth and spends alot of time in the hospital. There isn't a day goes by that I wonder what God was thinking. Or how am I ever going to get through this. Well, anyways, thats a quick introduction to us.

[Artina]

Guest,

Please know that I am sorry for your loss. We never get over the loss of our children. I know exactly what you are trying to say in respect to your living child approaching the age of your child who has crossed over. I too lost my oldest son and my living son is approaching his age. Feelings find their way to the surface and I find myself feeling a lot of "FEAR". It's hard.

My son died from injuries sustained in a snowmobile accident on Jan 4, 2002 at the age of 19. My living son is 16.

The awareness that life can change in a second seems to keep me in a state of fear. It's hard to keep my feet on the ground sometimes knowing that life can be so cruel and yet it can also be so fulfilling. I don't know if I should run or stay put.

I pray that you get the support that you need to help you through this difficult time. Talking is a great way to start healing. Please feel free to post anywhere on Beyond Indigo... because there are some great parents on here who have tools to offer that can aid you through this difficult time.

Peace to you, Tina

[Guest Guest]

Hi. I am new to this site. I thought that I would share my story. I lost my baby girl on April 26th 2006. She was only 2 months old. Her name was Eden Rayne Daye. They think that it was SIDS, but we are still waiting for the autopsy results to come back. I am just looking for someone to talk to that has been through the same thing that I have. Nice to meet you all.

Mary

[Guest Guest]

If you all would like to, you can go to www.eden-rayne-daye-06.memory-of.com, and light a candle for my baby girl.

Mary

[kirksdad]

Mary, I am so sorry for your loss. If you find out it was SIDS there is a support group at http://www.sidsfamilies.com/ that you could talk to. As you can see this thread doesn't get much traffic and that is sad because there is such a need for parent going through this to talk. In a couple of weeks they should be doing a different format with this site which will make it easier for parents to talk individually to each other and keep track of the conversations easily. I lost my son at age 17 in a single car accident where he was all alone. It has been hard, it always is going to be when a parent has to face mortality at the expense of their child's life. I will never understand. Hope you stay here, I know writing at this site helped me so very much. For what seemed like forever I wasn't replied to, so I stayed and tried to get some conversations going. It was a couple of month's after Kirk's death, I have been here for over 5 years and really it doesn't seem like that long ago. I hope you have some other replies, just hang in there, in time, emotions and feelings change, right now I know that doesn't offer too much comfort, but like they say, time has a way.

[ashleysdad]

Hi. I haven't posted in a while. I'm just drifting through life in a fog still. Tomorrow is Fathers Day. I wish I was still a father. My only daughter died on December 5th, 2003 at the age of 3 and 1/2. Life is empty without my beautiful Ashley....

www.ashleycaymclellan.com/Ashley/index.html

[sweetpea1995]

Ashleysdad,

My heart goes out to you on such a difficult day. You'll be in my thoughts and prayers, and I wish you luck getting through this.

Blessed be,

Jessi

[sweetpea1995]

Hi all,

I haven't posted on this board in quite some time, pretty much because the majority of people on this board are parents, and I'm only 14. The child I lost was my sister. It's kind of hard for me to identify with you guys, but on the loss of a sibling boards, most people lost adult siblings, which makes it a bit hard to relate to as well. My sister was 9, and I lost her on November 22, 2004 due to complications of Noonan Syndrome.

I don't even know what to say. It's weird, becuase for most of what I can remember of my life, she was always there, and now that she's not... it's the strangest feeling. The house is quieter, and I find myself wondering if I ever even had a sister, or if it was just my imagination. After nearly 2 years, I'm getting used to being the only kid in the house, and sometimes I find I'm asking myself "was she ever here at all?", even though I know she was and I have the photos and memories to prove it. Does anyone here know what I'm talking about?

[Artina]

Sweetpea1995,

Oh sweetie... I know that my son thinks the same thing. He was 12 years old when his brother crossed over (19 years of age). He says that it feels like he is the only child and that he knows that he had a brother, but if feels empty. It takes quite a melt down for him to even talk about his sadness. He does say, "I miss Chris". But, the conversations that are easiest for him are when we talk about his brother in life... he loves to share memories of his brother. He just lites up when he talks about him. Do you talk about your sister's life with your mom? It does feel really sad, but it also feels really good to do that. And for us, the good is far better than the sad because we always have that looming sadness over us anyway.

I'm glad that you posted and I encourage you to continue to talk if you need to.

Peace to you, Tina

[Artina]

Ashley'sdad,

I'm sure your life continues in a fog... today has to bring the clouds in even closer. Father's Day will never be the same for you father's who have lost their children and especially father's who no longer have a child in this life. I am so sorry. I pray that memories of your daughter envelope your Spirit and help ease your pain- for you are still her father and you will always be Ashley's daddy.

Peace to you, Tina

[Artina]

Mary,

I am so sorry for you loss. I can't imagine losing a child so young. I'm glad that you are seeking support through talk, because it is a resource that has helped me deal with the loss of my son (age 19) over four years ago. Keep seeking support and doors will open that will lead you towards some type of healing. You will always carry your child with you- forever- even when you choose to invest yourself back into life. Hold that thought close to your heart.

Peace to you, Tina

[sweetpea1995]

Tina,

Thanks for your response. Yeah, I talk about Allison (my sister) with my mom, depending on what's going on. I don't bring it up terribly often, but it does come up here and there. It does feel good to talk about it and get it out, I agree, but sometimes it is really hard to get started.

Yeah, it's much better to think about the good than the sad because the sad is always going to be there and there is no use focusing on it when there are so many other aspects of life to enjoy.

Merry part,

Jessi

[mamabets]

Happy Birthday, Kagan..You are spunky litle guy today, keeping all of your big brothers on their toes!! I have lots of silly little frogs from Beyond Indigo out in your angel gardea, and one that will always be yours, with Danny... A silly little froggie on a big boy footprint, with beautiful blue flowers alllllll over it- It says "footprints" on it and Danny will "carry"you whenever you gettt too pooped from playing, OK?? We cherish the love that we have for your sweet litle spirit... Happy Day, Happy Everything!! I love you, Bets and your big brother wink from Heaven

[coltinsmom]

Yesterday we celebrated your 13th birthday Coltin. I can't beleive you would be a teenager here on earth. This never gets easier. I look forward to the time when I can see your sweet smile again. It can't come fast enough for me. I love you Coltin!!

[lydiasmommy2002]

It's been 5 months today that my baby left us. I don't know what to do. I'm still walking around feeling so lost. I really think that I'm losing it. I don't know how parents who lost their child make it. How much longer am I gonna be this way? If somebody knows please tell me. I miss her so much.

[kirksdad]

lydiasmommy2002, I am so sorry for your loss. Taking time to grieve and mourn such a loss is very individual, but I do know from my own experience that it takes time. The first year is hell, the second year the numbness seems to wear off and the pain is very intense, but then some healing starts to take place. It has been 6 years for us and in the beginning I felt exactly like you, I think everyone that posts here feels the same. But in time you start to get some joy back and are able to look back and see that through the pain the joy of experiencing the life of our children will win out. It isn't easy to get to that point. It took me over 3 years to start feeling better about my job, to get that back in a little order. The pain is always with you in some way or another, but as time goes along it does get better. This is something we just can't ever forget or put aside. The loss of a child is a lifelong journey, it does get better, but it is so hard to completely put our feelings in perspective. I do know the 6 years feel like a lifetime, yet like a moment if that makes any sense. Jim

[messenger]

LYDIASMOMMY..............IT WILL BE A WHILE BEFORE YOU START TO FEEL BETTER...THINGS ARE SO FRESH AND ALL I CAN SAY..IS TRY TO KEEP YOURSELF BUSY.........THAT IS WHAT I DO..MAYBE I KEEP MYSELF WAY TOO BUSY....THATS WHAT PEOPLE SAY..BUT IT KEEPS MY MIND OFF THE LOSS OF MY SON......IT IS THE QUIET TIMES THAT GETS US TO THINKING ABOUT OUR LOVED ONES ............HAVE YOU THOUGHT ABOUT MAKING A PHOTO ALBUM OF YOUR DAUGHTER..I AM WORKING ON ONE.....IS THERE A SUPPORT GROUP CLOSE TO YOUR HOME??? WE CAN ALL HELP YOU BUT IF YOU CAN GO TO ONE ..IT MAY HELP YOU...THERE IS A LOT OF PEACE IN CHURCH.............THAT HAS HELPED ME ,,IF IT WERENT FOR OUR FAITH AND FRIENDS AT CHURCH....I DONT KNOW IF WE WOULD HAVE DONE AS WELL..THEY ARE GREAT SUPPORTERS....WHEN OUR SON DIED HE WANTED PUT ON HIS FUNERAL PLANS TO BE A CELEBRATION OF LIFE.........FOR US NOT TO BE SAD..THEY ARE FINE...WE ARE JUST HURTING ..MISSING THEM....BUT THEY ARE STILL WITH US ..I AM SO SORRY FOR YOUR LOSS..................MAY YOU FIND PEACE...YOU WILL BE IN MY PRAYERS...THE PEOPLE ON HERE ARE THE BEST....PLEASE KEEP IN TOUCH...MESSENGER

[kagansmommy]

Lydias Mommy, I wish I could tell you that the way you are feeling will go away soon...but it won't~! Today, the 28th, is 19 months without my precious little boy. The fact that he has been gone longer than he was here with me is tearing me up inside. You eventually learn to deal with the pain better but the pain will never be less intense. I never want to forget and I never want to stop hurting. For me the pain going away scares me because that means too much time has passed without him. Everyone told me after the first year that it gets easier...wrong~!! ALL the "1st" holidays, and birthday were hard. Now doing everything without him yet again hurts even worse. I feel like I am going backwards sometimes. Feel free to email me anytime at kagansmommy@aol.com

I would be happy to talk to you. If you want to share your story I am more than willing to listen and help all I can.

Peace be with you~!!

Christy

"Mommy loves you Kagan"

[bolan747]

It has been a long time since I posted. Our newborn son, Roy, died of trisomy 18 in February 2001, when he was three days old, and then we lost my mom in a car accident 10 days later. I can tell you that you never "get over it", but over time, the grief will become less intense. Also, that the more we love, the more it hurts. Every parent here was a remarkably loving parent, and that is why it hurts so deeply. I can finally be around babies without falling to pieces, and I can talk about him without uncontrollable tears interfering with the stories. But we will never be the same and never forget.

Janet

[lukesmom143]

Is it just me or did a lot of the posts disappear? It skips from early June to late August. I'm so confused.

[gdlmmoss]

I lost my 22 month old daughter, Megan, hemophagocytic lymphohistiocytosis, on 08/14/2002. Her birtday (09/26/01) is coming up, and I'm having such a difficult time coping. Too many things are piling up on me and I don't know what to do. I miss my MayMay, as we called her, so much, I get a physical ache. My 4 year old surviving daughter doesn't understand and tells me, "It's OK, Mommy, you've only got 1 kid now." I know what she means - I've still got her, but her words cut like a knife. I cared for MayMay her entire illness - we lived at Texas Children's Hospital for practically the entire year she was ill. I can't go to the Medical Center without having a panic attack. When I see Laura playing by herself, I can't help but think, there should be two of them doing that, playing, fighting. My girls meant the world to me, and one of them was taken from me. She put up a valiant fight. She didn't fuss and cry, when the nurses would come to take her vitals, she'd stick out her leg for the blood pressure cuff and lift her "wing" for the thermometer. She would hand them the tube from her central line when they came to draw blood, or hook up her meds. She only lost her temper once with a doctor, and told her "MayMay no doctor - out!" and pointed to the door. The doctor actually left. At the end, her HLH had destroyed her liver, spleen, & her lungs. She was in the ICU on some experimental drugs, when they told us they had done all they could do. We made the decision to remove her from the machines, and I was so angry that she didn't take a breath on her own and show them that she was all better. TCH allowed Laura, then 2 years old, to come into the room to say good-bye, and then after Laura left, MayMay was placed in my arms and peacefully left this earth. She never got to ride the "choo-train" (the metro light-rail train) that runs in front of the hospital. She never got to go to the beach. She never got a chance at life.

I love you so much, MayMay - I can't give you all your hugs and kisses, so I give them to your big sister.