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Loss of an Adult Child


momofJustin

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InHeavensKeeping

Hi Sherry Thankyou my eye is much better I still have the swellings in them but there is nothing sinister going on. I'm going to continue to keep trying to get some justice for James but it's soul destroying when the person who has done the wrong just walks away and gets on with their life and were just left with this bomb shell that's torn us and our lives apart but I'm not giving up yet.

Laurie I'm sorry your court date didn't go well today I just don't understand the justice system any more we are trying a civil case but having problems with that as well. We cannot afford the investigation you suggested. But thank you for your support.

I wish you all a peaceful day

Much love Georgina xx

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Jesse, David's Mom

Court can be a very difficult place. Feelings take no part. Facts, paperwork, and what can be proven.

I am so glad you and your family are finally getting progress and keeping a dangerous person away from the public.

Happy for you, my friend

Colleen, Brian's Mom forever

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Colleen...........Happy   27th  anniversary...and wishing you & your husband many more!

 I ,so, know what you mean when you say   "it seems like an eternity....and yet only

yesterday."   It's the time warp we who have lost a child get caught in.....our new 'normal'.

Peace to you, friend.

 

Laurie----Isn't that court stuff unbelievable?? :angry:  Any 'average' person would think that when

the girl was driving the wrong way on the road, causing a wreck.....that it would be a no-brainer,

and she would not have a ghost of a chance in worming her way out of it.  However......it is

just so puzzling, frustrating, and confusing how lawyers tangle up the courts in miles & miles

of red tape.....deny, delay,  stall.....etc. We heard the same thing..."they just want to get on

with their lives and their family"....blah....blah...blah...seeming to just ignore the fact that they

ruined another family's way of life forever... Stick with it, Laurie. It sounds as though you have a

very good handle on keeping track of every little minute detail, and keeping all concerned

on their toes in your valiant determination to get justice for your son, Jesse. 

 

Dee----Yes, I did sleep well. Today,.... doing laundry....baked a banana nut bread, and picked

raspberries (in between the storms & downpour). It's good to be busy. :) 

 

Georgina----Glad that your eye is healing well.  Yes.....the legal system/courts  can be so very

aggravating in their slowness, and red tape.  I pray that in time, you will succeed in getting

justice for your dear James. As you say,...it takes a lot of effort, but determination is the key.

 

PEACE    AND    TRANQUILITY   TO   ALL   INDIGOS.

 

Davey&Lisasmom,    Sherry

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Laurie, I agree with everyone here who also endured the courts, it is mind boggling and exhausting to go through continuance after another, traveling in our case to Michigan from Chicago, and all the meetings with lawyers... and when we were finished, even though we did not 'win'

I was so glad to get on with the business of living, the years spent in battle needed to end.

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Jesse David & Taylor Mom

Dee, Sherry, and Colleen, when you walk through that legal process, it is just another layer to all of this....it has been helpful to me to be here where I can be with those who truly understand what this means. Sherry, I actually emailed your response to my husband last night so he could read it as we are feeling unsteady.

 

And thanks to all for your messages of support.

 

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

 

Laura, thanks for your posting of the lovely drawn picture from your daughter. These types of tangibles seem to help anchor us in the moment. I keep those kinds of things too...

 

Susan, are you in the swing of summer down there? My friend went down to Georgia last week and said it was over 105 degrees...

 

Shannon, how are things going with the new house? Is your son going to the local high school this next fall or will he be homeschooled?  It was good to hear you have finally found a place you can rest and call your own...

 

Georgina, I am sorry you are not getting far in the courts where you live...it is a very difficult, draining process. Hugs.

 

Dee, are you still having your Erifest this year? And have you any special plans for it?

 

Eileen, thanks for sharing the picture of your Aurora...she is a cutie...

 

 

Becky, thinking of you today...sending hugs.

 

Gretchen, sending you warm thoughts today.

 

 

 

 

 

 

 

 

 

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Laurie, we are having Eri-Fest on July 19th, at 3:00. We do just a casual gathering and at some point in the day, we send off balloons with messages on them. Fingers crossed that the weather will be good, it was lovely today and yesterday. Would love more of that.

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Dee - Wishing you good weather and positive thoughts.  I actually have a story with balloons that I have written in my book.  Here's part of what I wrote. The fmaily we lost on Thanksgiving was my son Joseph, and my cousins David and James.  David was just a little younger than me and left behind his wife and three children.  James was 17.  Sending loving thoughts and prayers for your magical Eri-Fest.

 

"After the service for David, everyone proceeded to the cemetery, where we all released a bunch of balloons with messages of love and beautiful memories in honor of Joseph, David and James.  Each balloon had it's own special thought or memory.  What was so magical about this was that as the balloons were released and floated up towards the heavens, three balloons were momentarily delayed in the tree before joining the procession of all the other balloons that were already soaring up through the clouds.    The colors of these balloons were orange and blue. These were Joseph, David and James' favorite colors. It was as if they were saying. This is farewell, but not goodbye. We will meet again."

 

Laurie, you're welcome.  My children are my lifeline and have helped me through some really rough times, and vice versa.  

 

Susan, hope the weather gets cooler for you.  The weather here on Oahu is usually pretty constant throughout the year.  August can get pretty hot though.  

 

Georgina, prayers and loving thoughts for your and your family.

 

Sweet Dreams To All.

 

 

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lovU2themoon

Hello my friends, I hope you are all doing well.

I continue on my grief journey as the rest of you are too.

I will try to keep more update on this site, it's almost like coming home.

All the familiar names and faces of our children, it brings me comfort being

Around those who were with me the first year, the first weeks, all those first.

Sending hugs to each one of you. ❤️❤️❤️

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Jesse David & Taylor Mom

Wanda, good to see your note here...along with Lane's precious face....don't know if you have seen the video Wade put together, there are some pics in it from your family...

 

 

 

Dee, hope your upcoming day for Eri goes well...thinking of your sister and her son as well with the struggles there. Prayers.

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Wanda, it is so nice to know you are out there, finding your way. Glad that it feels like coming home when you come back on site. Tell us what is new and how you have been getting on...miss you.

 

Eri-Fest is on the 19th of July this year, a Sunday and all I can hope for is NO RAIN OR STORMS...it is a yard party. So send your good thoughts.

 

Laural, your balloons stalled as a message to you, I so agree. The kids really look forward to the balloon launch, and Eri's friends who are in their 30's now, still write to her and attach little messages. It warms my heart. Remind me to tell you the story of the clouds on the evening of Eri's death...she was truly present in the sunset.

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Laurie-----After our ordeal with the courts.....a few people asked if it was all worth it.

Everyone has their own decisions to make regarding their own case, but for me......

we had to seek justice .....even though we didn't really get it.  But.....we felt we had to try.

I applaud your determination...which is what it takes when entering the swampy quicksand

of the court/law enforcement system, looking for justice. They can't just expect us to 'go away'.

Wishing you luck with your quest for justice for dear Jesse.

 

Dee-----I sure hope that you have nice weather for the ERi Fest.  I remember your wonderful

experience with the pink clouds at sunset when your darling ERi was winging her way to heaven,

and how some relatives saw the same pink clouds far away.  

 

Laurel-----So very sorry for your loss of your son and cousins on Thanksgiving.  I hope you

will continue to come to this site, where everyone understands all the sorrow & pain that

comes with such a devastating loss of dear lives.   Peace to you.

 

LovU2themoon------Good to see your post.  We  must navigate this journey one day at

a time....one step at a time.  Each at their own pace, and on their own timetable.  Thoughts & prayers.

 

PEACE   AND   COMFORT   TO   ALL   INDIGOS.

 

Davey&Lisasmom.........Sherry

 

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Thank you Sherry, for your kind and beautiful words.  This Thanksgiving will be 10 years that have passed.  I still get messasges from my precious Joeyson.  I hope that I can be of assistance to others too, and send love and light to all.  

 

Dee, funny you mention cloud story.  Here's what I wrote regarding my experience.  "That morning, after the police had left, some of Joseph's friends drove from Lake Tahoe along with our Pastor and his wife, and their son to be with us and pray.  Joseph's friends persuaded us to leave the house and take a walk to a nearby park.  I remember looking up to the clouds and wiping my eyes.  I wasn't sure if I was imagining what I had seen or not, so I didn't tell my husband, who was walking next to me, what I saw.  I just stopped him, and asked him to look up in the clouds, and tell me what you see.  He looked up, and with tears streaming down his face, said "Joe".  I was not imagining what I had seen.  My husband saw it also.  Our son's name was written in the clouds.  To me, it was if he was saying, "Mom, I'm okay.  I'm with God, but I want you to know that I am always with you, watching over you and the family.  I Love You."

 

Wishing everyone a beautiful Aloha and Blessings.

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lovU2themoon

Your all are such a welcoming group, and I speak the truth when I say how I missed you guys.

Time has such a different meaning now. I find that those that share the same heart, it can be 6months, or 2 months, since we all last spoke, and we pick up as if it was yesterday.

Thank you for sharing that video Wade made Laurie, he is so thoughtful!

In my world, that seems to stands still, not much has changed, or so it feels like, I am sure many things are different, but as I continued to move forward, Lane's death and all that goes with it is still very much an everyday struggle.

Lindsay has returned to School, so my house is way more quiet then ever.

I find that tough, I am working with vocational rehab therapy counselor for my return to work program.

But her assessment is slow going, which is ok, gives me more time to heal.

Healing being the focus, and learning to live with the death of Lane each and everyday.

I have worked a lot on finding peace and contentment rather than happiness. I trust I will have happy times, for lindsay and yes laughing times, but right now I wish for peace.

I continue to have a 'team' of medical professionals to fall back on, I have Kim, she is a psychologist, it's absolutly a love hate relationship, my family dr, and a psychiatrist.

I think that's all! I am sure there is so much more,, I will post again, like I said, I have miss you guys. Your help your insight, and your wonderful kids!

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lovU2themoon

I attached a picture of the small rock garden I made for Lane, I will see if I can send a couple more.

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Jesse David & Taylor Mom

Susan, haven't seen a post from you the last weekend....miss you...so used to your daily posts...

 

Sherry, thanks for the continued support and wise words...I sent them again to my husband so we know we are  not the crazy ones to seek justice...

 

Wandy, what a beautiful rock garden you designed for Lane...

 

Laura, thank you for sharing your story, many of us have had those kind of validations that our child lives on....until we meet them..,

 

Dee, I would love to hear your Eri cloud story when you have time...It must be so heart warming that her friends still stop by to remember....

 

Becky, thinking of you today...

 

 

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Susan is at the family place this week, so she will post when she returns. This is the reunion time...

 

 

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Jesse David & Taylor Mom

Dee, thanks for the reminder...I forgot Susan posted that.... :)

 

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

 

Found a post from a bereaved mom on "My 'rainbow grandchild", thought it had some meaning so I am re-posting it here...

http://losingorlarose.com/2015/03/21/my-rainbow-grandchild/

 

My ‘rainbow’ grandchild

 

Rainbow child : A child that is born following the death of a child

 

In the real world, a beautiful and bright rainbow follows a storm and gives hope of things getting better. The rainbow is more appreciated having just experienced the storm in comparison.

 

I’d never heard the term ‘rainbow child’ or ‘rainbow baby’ before I became a bereaved mother, but since reading the many blogs & articles about losing a child I’ve become very familiar with it.

 

Leigh is my ‘rainbow’ child. I found out two days before Órla died that my eldest daughter was to become a mother for the first time. I was so happy to be able to tell Órla she was going to be an aunty. Her response to this fabulous news? ‘Yeah whatever’ now most would think this was because she was so ill and frail but those of us who knew her well know that this was a typical response from Órla when it was something that didn’t really interest her. I know she thought about the baby because later that evening she said she wondered what the baby would look like.

 

A day and a half later my baby was gone, never to see or hold her niece/ nephew in her arms, never to hear her name ‘Aunty Órla’ being called. I desperately searched the web to read about the afterlife and to see if it was possible for órla’s soul to know and see the baby’s soul before it was born. After all as a true believer we didn’t ‘just die’ it’s only our physical self that dies. I saw that in Órla’s body, it was just a shell, I knew Órla wasn’t there anymore. So where was the baby’s soul?

 

A lot of people believe that a baby’s soul doesn’t enter the physical body until the moment of birth, that the soul stays near to the mother. I liked this idea, I liked the thought that my dad and Órla got to know and love Leigh’s soul before we did. They say children see spirits well Leigh definitely does from day one he looked past my shoulder and now at 5 weeks old he smiles (yes actually smiles) and get very excited looking over my shoulder. When I hold him he very rarely focuses on my face like he does with his mum and other people but concentrates on a spot over my shoulder. I like to believe this is Órla’s spirit bobbing around and teasing him just like she would have done if she were here in physical form.

 

My ‘rainbow’ grandchild has brightened my life without a doubt but it also comes with memories of when Órla was a baby, how Órla slept/took her bottle/did what at what age. I know we’re supposed to remember the happier times and not the illness but the happier times with Órla are tinged with ‘what if we’d known’ ‘what if I’d said’ ‘ what if she were born here’ ( Órla was born with cystic fibrosis but it wasn’t detected until she was 6 when the damage had already been done). Seeing my daughter become the beautiful mother I knew she’d be reminds me everyday that my baby’s not here anymore that I no longer have dreams of what she will look like when she’s a teenager or what kind of adult she will become. My dreams are now filled with seeing her again in heaven, holding her once more hearing her call me mom.

 

So yes Leigh is my ‘rainbow’ grandchild but Órla will always be my rainbow.

 

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

 

Another Blog: Holding Onto My Loss by bereaved mom, Robin

http://acompassionatefriend.com/2015/03/16/holding-onto-my-loss/

 

It is common, I expect, this desire to “process (grief) correctly.” It is a stubborn ideal borne out of independence, success, and the force of personality. We assume that if we work at it, if we maintain a high level of self-awareness and consciousness, we will somehow get grief right. We will figure out how to survive – and smile, laugh, and once again love life.

 

All the while, as the silent machinations play out in my head, I am missing my daughter acutely. I am reaching out my hand in the night, hoping to feel her touch. I am studying her picture before sleep, hoping to find her in my dreams.

 

I will never be quit of this longing.

 

But maybe grief has another purpose, one that I hadn’t properly appreciated.

 

Many parents who have lost children seek support from grief groups. I attend The Compassionate Friends; and, sometimes, a smaller local group that meets at a family therapist’s office. And there is help in these meetings, solace, understanding. And the sweet opportunity to talk about our children.

 

Sometimes we find help online on blogs, in chat rooms, in the back pages of online ezines and newspaper posts.

 

We find help where we look – and, sometimes, it finds us.

 

My help came in the form of an op-ed published in The New York Times. Patrick O’Malley, a psychotherapist in Fort Worth, Texas, chose to post a few paragraphs in his weekly column about a bereaved mom who sought his help. The mom was, according to O'Malley, “unaccustomed to being weighed down by sorrow.”

 

I can relate. I have been trying to re-connect to my natural spirit for the past six months, trying to re-connect to the positive joy and gratitude I feel when I think of Camila, when I recall how we shared our lives. Though I feel that joy, though I feel that gratitude, it no longer seems to sustain me. In its place is a deep, dark grief, a longing for my girl that I know will never be answered.

 

I have been trying to push this feeling away from me, to trick my mind to turn instead toward something else, something benign that is sterile and safe. But my "mother" memory rises and takes me on a path that leads inevitably to my pain, and so the cycle begins again. I cannot seem to escape my sense of loss.

 

Because I cannot escape my loss, I know I must somehow become comfortable with it. But is there another way to think of this process? What I need is a new viewpoint, a new way to think of my grief and interpret my emotions.

 

Then I read this article, written by Patrick O’Malley, near the close of it was this thought:

 

“When I suggested a support group, the bereaved mom, Mary, initially rejected the idea. But I insisted. She later described the relief she felt in the presence of other bereaved parents, in a place where no acting was required. It was a place where people understood that they didn’t really want to achieve closure after all. To do so would be to lose a piece of a sacred bond.”

 

And now I have something new to think about, something that may prove helpful and sustaining: What if I change the tack I’m taking? What will change in my head and heart if I tell myself I want to hold onto my loss?

 

I don’t know yet. But I’m going to find out.

 

 

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

 

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Laurie, thanks for these excerpts you quoted, both of them so very powerful.

 

Okay, cloud story.

July 14th, 2003, Kalamazoo, Michigan. Erica died at around 3:00 PM after we ordered her off the machines that kept her alive for 6 days. We were told it could be brief or it could be hours long before she let go.

It was an hour. A very sad but spiritual hour.

 

Later on, when we gathered ourselves and left the hospital, I had no desire to go home to Chicago area. I needed to stay in the town that she loved so much. WE checked into a crappy motel and then my husband and I went to eat at a restaurant,next door to the motel.  we hadn't eaten a meal in almost a week, just bits of things here and there, never leaving the hospital. So while eating, my husband said, look outside...It was sunset time, the sky was a brilliant magenta. We ran to parking lot and there, in the sky right there as clear as day, was ERICA in the form of a large cloud. She was in the pose of floating, and her long feet (she had really big feet) were turning pink as the sun was setting through her. Her outstreched arms were like a wave, and thin cloudetts wound out from her head, just like her dreadlocks. She was reaching out to a figure who appeared to be a giant smiling man. My husband is no believer in any of this stuff, but he saw it all, he stood there crying alongside me and pointing, jaw dropping beautiful sunset, magentas and reds and pinks of all kinds running right through my Girl into the man waiting for her...my phone rang and when I looked  it was my sister...my two sisters and three nieces were together in a car already in Indiana and they were crying and telling me that they see ERica in the sky...there she was that wonderful girl, letting us know that she was reaching Heaven, that she was watching over us. I would not go in until the last of any light was in the sky and reluctantly went into the ugly motel room. I flipped on the television: a weather report saying that the newest hurricane in the Pacific was Hurricane Erika (they used a K where we use a C). How cool, a storm was named that day, named for my storm loving girl, on the day she died.

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InHeavensKeeping

Laura's thank you for your good wishes. I too have had the same expense with the clouds. I see James's image all the time and the letter J I used to think I was going mad but I know now that it's James reaching out to us the best way he can to let us know he's ok We see a robin at the grave, we go everyday, but the robin only appears when we are so desperately upset. It's strange there's an older lady who visits her husbands grave and my husband was saying about the Robin and she said that in all the years she's been coming she's never seen a robin !! So I know it's James way of reaching out to us.

I'm findinding everyday so tough people's comments are the worse a man at work said to me today" why bother with the courts that the driver didn't do it on purpose and it's not going to change anything" he's got a horrible attitude and seemed annoyed and concerned for the driver of the lorry !

Dee I hope your Eri feast went well xx

Laurie thank you for the article. I just loved what she said about closure that's exactly what I keep telling everyone 'there is never going to be any closure ' but just couldn't put it into to words like this lady.

Peace and Hugs to you all

Much Love Georgina xx

A picture of James and his Dad I put on canvas for Father's Day xxx

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Georgina, I love the photos side by side, how thoughtful a gift for your husband. They sure do have the same brow line and intense eyes. I am so glad that you are seeing James in and around you, knowing now that he is showing you that he is near. As far as the courts, we can only do what we are driven to do, to fight for some sort of justice in the courts is not a bad thing, but many folks feel compelled to tell us what they think nevertheless. You do what is best for you.

 

Thank you for the Eri-Fest thoughts, it will be in July.

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Mermaid Tears

Am back...so tired....but....yes....this 'Rainbow child' I have spent countless nights 'wondering' how this blessing could be for all of us..more later....

Dee....that 'cloud'....I still have that picture in my head...could you please post it...?? besides the light in the forest/path....that stays with me...as with all on this site...

I think this 3rd year has it's own challenges...crosses to bear...it is in this year...I find how easy it could be to drop off the end of the world...but we 'have promises to keep...and miles to go before we sleep'....

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Jesse David & Taylor Mom

Susan, good to see your post...know that these family times can be therapeutic for a person...hopefully you had some restoration from this family getaway.....I thought of you too when I saw the Rainbow Child...I know there are several here who have  had the same situation as well...

 

Georgina, what a lovely picture of both your hubby and son, wow, they look like a pair of brothers rather than father/son...I am sure they shared much together....

 

Dee, thank you for sharing the cloud story...I love to hear those stories too as they bring much hope and comfort......sending good thoughts for Erifest coming up..

 

Wondering how the rest of our gang is doing out there....miss your posts! Hope that you all are finding some rest and some measure of peace....know how elusive that can be though....

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Mermaid Tears

Will post photos later.....

 

With this kind of grief.....and then with my 'cocooning'.....I found that the tiny...tiny....miracles that are around us everyday seemed to come and shine for me....one was becoming aware of Mother Nature and her healing...if we just stop and be still....letting her warm us with the sun....letting the colors of Mother Nature soothe our shattered hearts...

 

I love the description ' a Rainbow child'....walking along beside him at the beach I sometimes have a nano second of some kind of answer to all of the questions in the Universe....a 'wisdom beyond my scope' of understanding....it is very fleeting....it is like there for a small moment in time....I know that 'all is going to be ok'.....I feel full and flush with a rush of quintessential joy.....it is almost an over the top happiness....I wish I could stay in that kind of moment....but I am grateful for that sliver of peace beyond understanding. I do have to abandon my form of earth control to live in that moment.

 

I hope there are friends on this site that understand what I am trying to describe.

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Susan, hugs and prayers with you always.  I agree with you there are miracles everyday.  Just know our children are always with us, and will send us a sign one way or another.

 

Dee, beautiful ccloud story.  Truly breathtaking.  What a beautiful affirmation Erica sent you.  I saw a J in the clouds yesterday and pointed it out to my husband on the way home from the beach yesterday.  Boy, did it made me cry but also made me smile knowing he is still with us and always will be.

 

Georgina, since we moved to Hawaii I'm not able to visit my son's grave but when we lived in Nevada, I too alwyas had a visit froma bird at Joseph's grave that just seemed to pop in at the right moment with a "Hi Mom"

 

Laurie, thank you for the rainbow child story.  I'll have to post my story later regarding my granddaughter whom my husband and I have been raising since she was born.  She is now 8 and what a beautiful gift she is.  She has a mid case of cerebral palsy but she doesn't let anything get in her way.  I have a beautiful picture of her doing a handstand on the beach a couple of weeks ago.  She is so amazing and brings me messages from Joseph quite a bit.  They have a strong connection even though she was born two years after Joseph passed.

 

Everyone have a blessed day!  Love hugs and peace to you.

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I have read a few replies to other posts and says that mostly everyone posts on here.  So here was mine.

 

My 12 year old son has a rare genetic disease. The easiest way to describe it is to liken it to a childhood form of ALS. Since he was about 6 he has really started the decline to where he is today. Two years ago had a tracheostomy put in and has been on a ventilator for support since. Has no movement of arms and legs. Just recovered from spinal fusion surgery because his scoliosis was over 80+ degrees. Doctors do not know exactly when he will pass away but he will at some point. Just looking to talk with others that have had a child go through an illness that took your child from you. How you dealt with it day in and day out? And how you coped after. I certainly have my good days and my bad days. Just looking for support.

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Jeff's Mom

I just read your post and saw the photo of your sweet young son. What a good looking boy! I am glad that you have come here to look for support. I know that you will find caring and supportive people that will help you along this difficult journey. I am sure that there are many that will reach out to you to offer a friendly word and  offer their help as they can. You are not alone in this. Sending  warm wishes. Kate 

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Laurel, ......Dee.....and Laurie------thanks so much for the lovely and inspiring

stories.  I , too, believe that we can look to the sky, many times, and be

just stunned & grateful for what we may see,..... that is surely a message from our dear

beloved ones who have crossed over.  Once when my husband and I was

visiting Dave's grave, and Lisa's grave....we heard a slight 'rush' of noise

above, that caused us to look up.  There, flying over was a flock of birds

that appeared to be all white and shining.....with scattered white clouds as

a backdrop. The sun had caught them in mid-flight, and they appeared almost

to be illuminated. The birds were had soon flown and was gone, but we were so

glad and found encouragement to see them.

I will always remember that day.

 

bkscher72-----You have found a good site to come to for support, understanding,

and friendship. Come and read or post, and tell us about your dear son when you

feel that you want to. Please come back to BI  (formerly called Beyond Indigo). Peace to you, friend.

 

 

 WISHING  PEACE, COMFORT, AND  A GOOD RESTFUL NIGHT, TO ALL  INDIGOS.

 

Davey&Lisasmom,    Sherry

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Jeff's Mom

BONNE FETE DU CANADA! HAPPY CANADA DAY!

 

LOVEU2THE MOON...THINKING OF YOU THIS HOLIDAY. I hope you are keeping safe. I hear the smoke from the forest fires is very dense. We have just had a hazy sky so far.

 

Wishing everyone a peaceful evening. Kate

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Mermaid Tears

Bkscher....hope I got that right...in answering to you....

first....I want you to know how very courageous and brave you are...and I have the umpeemth amount of respect for you...I did not have to stand at my SONshine boys bed and see him slip away....but....I do know there has to be a certain amount of amazing love that will...surround you....and you will find an amazing amount of love and support on this site...

even though...many on this site did not have the gift or grace to do what you have been called upon to do....we may not have answers....but we do have each other....to hear you and be here for you....

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bksher72, I am in awe of the strength that you must have developed over the course of your Sweet Boy's medical issues...I lost my Girl differently and nearly 12 years ago but I have sat bedside with a little girl named Alice many years ago. She was 4 when she died from brain cancer, 18 months when diagnosed. Alice lived on our block and was at our home everyday along with her sister Kate. She inspired many with her spirit and love. Her Mom and Dad suffered greatly but also would never want to not have had the time to know their Girl. They faced life without Alice with great heartache and grief, but found her spirit in everyone that loves Alice, and in all things nature provides.

I think knowing that you need to talk to others about this is a good sign of wanting to find a way to live through what is coming. I know when folks would tell me I was strong, I wanted to scream NO I AM NOT, but I am, I had to be, I found out how strong I actually was, as you are doing.

As the others have said, you are welcome here and we will hold your stories to our hearts as we do all the life stories here.

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Thank you for those of you that have offered your kind words and your support.  It is a sad and long story but I will do my best to give the abridged version.  First the picture you see below is of my son Ian and his twin sister Becca.  She is also very much a huge concern for us as she will be the one that is here after he passes and how she is going to cope not only with the loss of her sibling but of her twin even.  She has mentioned many times how guilty she feels because of her being healthy and "normal".  However, she too does have the gene mutation but is only a carrier just like my wife and I.  

 

Anyway, Ian's story started basically from birth.  He was labeled as failure to thrive, was basically hour to hour for the first week of life, microcephaly, developmental delays,etc.  However up until about age 6 in 2009, he was at least 90% independent. Could dress himself, walked with a gait even though he wore braces on his lower legs, could feed himself, brush his teeth, you name it.  Well in summer of 2009, July 4th weekend in fact, he developed a virus or something that we couldnt pin point exactly.  He didnt return to baseline but came back most of the way.  Six months later had another virus or episode as we called it and again didnt return back to that new baseline.  Over the months he regressed little by little.  Started using a walker and then around September-October 2010 went in to a wheelchair.  He was able to drive himself around, just wasnt really able to walk any more.  As time continued to go on, he regressed more and more, couldnt drive the wheelchair as well, couldnt do much of anything himself.  Well in 2012 our geneticist told us of this new whole exome sequencing test that we were able to get.  This test is compared to looking at a map.  Normal genetic tests just looks at the state and shows you the separate highways and interstates.  Well this exome sequencing gets you right down to your house like you can see in google maps.  Thats when they discovered this VRK1 mutation.  Oh and let me add, we received Ian's true diagnosis July 4th weekend, 3 years to the day almost.  

 

After that I have come to realize that coincidences dont happen.  Anyway, since then we are basically raising a 12 year old baby.  He is in diapers, I think as I said has a trache and on a vent, has a G Tube but only for meds and some fluids.  Most of the time he is a pretty happy kid, almost as every bit a 12 year old little boy.  LOVES spiderman and playing on the Wii as well as Legos.  You should see his room, Legos and Spiderman.  His make a wish trip was to meet Spiderman, very cool.  But as he is entitled he certainly has had his down moments.  When we ask him every now and again if he is ready to go to heaven he keeps telling us no.  But we do tell him that it is ok to go.  Mommy, Daddy and Becca will be ok, which we wont initially, but he doesnt need to know that.  We certainly have come to terms with knowing he will eventually pass.  As horrible as it is to say, we are ready, not only for him to be out of pain and such, but also for us to move on with our lives.  Of course he will always be a part of us and we will always be a family of 4 but we are ready to start the true grieving process, the healing getting back in to the real world.  Hope no one feels offended for me saying that and I apologize but its true.

 

I am including the link to my wifes blog.  Please feel free to read any and all postings.  The blogs are more for us to get things out but for others as well to allow people in to what we are going through.  Again, thank you for your kind words and immediate support.  

 

http://mlsbks0422.blogspot.com/

 

 

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Bkscher72-------I have read your story of your sweet dear son, and agree with the others that

you are so courageous in your dealing with his medical issues.  It must be so

very difficult and heart-wrenching on a daily basis. It's plain to see that there is plenty of love

to go around in your family.....and love gives you strength. I don't have  the words to say all I would

like to say about your dear family, and your sweet little boy.  I will just say that you are so

very welcome to come here to this site and post anything you wish. Thank you for posting the

link.....beautiful family picture. Sending thoughts and prayers for your boy, and your entire family.

 

Davey&Lisasmom,   Sherry   

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TearsInHeaven

BKSCHER72---You are an amazing family with all 4 of you showing immense strength and fortitude.  I am somewhat newer to this site but have found all to be just so supportive no matter how many times you look to lean, or unburden..  This group has been brought together by loss and tragedy and have amazing skills to help you from afar whenever you need to know someone is listening. You found a welcoming circle to join.

 

Dee- the cloud story is the most beautiful I have ever heard.  When we have those dark days rear their head it is comforting to believe in that beautiful hereafter.  Your beautiful Erica showed it to you right off.

 

Georgina, you have said so many times you wish you could have a sign from James.  If that robin story isn't exactly that I cannot imagine what is. Like Wade and the deer.--- That little bird was sent from James to try to give you comfort.  It is James putting his arm around you.

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InHeavensKeeping

Dianne I know now but it took me time to understand. I think it's because I wanted James back and struggled with the concept. I'm struggling with everything now I just can't believe he's gone forever

Dee Laurie thank you I love that photo it was a few years ago that it was taken. Dee the cloud story was just so lovely how comforting for you and your family. On the day of James funeral there were two kisses in a clear blue sky, I will attach the picture, a cousin took to show me I didn't see them but now I think about it I think James was thanking his Cousin who'd helped us pay for everything.

Thank you Laural I'm glad you had a visit too. I do think James is trying to reach out to us to let us know he's ok. I just have doubts sometimes because I don't want it all to be true.

Sherry I love your story it must of given you goosebumps to see such a sign.

Bkscher72 I am fairly new here too You have found an amazing place to get loving support and comfort. You have a beautiful family I will keep you close in my thoughts and prayers.

Peace and Good Wishes to you all

Much Love Georgina xx

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tobyfreefoot

haven't even read. i'm sorry i'm so self absorbed. trying to get ready for forest's graveyard picnic. it will be the 4th the day after his angelversary because the 3rd is the night of the annual walker fourth party. his friends will be there and we will gather the spent fireworks to decorate with the next day. 

 

my friend lynn heard from someone who found her son, joshua. pretty horrific story. she is very distraught.

 

my daughter allison's husband was just diagnosed with incurable myeloma, a form of leukemia wednesday. they have a 1 yr old and a 3 yr old.  they are hoping to get him in to a clinical trial in arkansas. luckily she has $5000 from forest's insurance money because they have no health insurance. post-298275-0-99277900-1435883243_thumb.post-298275-0-75757700-1435883265_thumb.

 

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Jesse David & Taylor Mom

Gretchen, I am so sorry for your daughter and her husband. I am putting some links for you...when my sister was first diagnosed with the brain tumors and for awhile we were not sure if she was terminal or not, we were advised to apply immediately for Disability and they would assign a certain status for those claims. They are put at the head of the line and disability insurance is assigned. For her, she still has her medicaid insurance. Here are the Social Security Disability Links that are relevant

 

http://www.ssa.gov/disability/

 

https://secure.ssa.gov/poms.nsf/lnx/0423020045

 

Again, I am so sorry for the news. Hugs....

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Jesse David & Taylor Mom

BKSCHER72...thank you for sharing your beautiful son with our group. Your family is in my prayers and your sweet boy Ian. Sending gentleness and love...

 

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Jesse David & Taylor Mom

Georgina and Dianne, thinking of you both tonight...denial is so much a part of this path...there is a part of me I think that will always resist this new reality...

 

Sending out gentle wishes to all...

 

post-312988-0-11712400-1435891254_thumb.

 

 

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Holy crap Gretchen, I am sorry that your Girl is facing this terrible sadness, along with the kids and the whole family, and I pray for your Son-in-law, his sweet smile...his daddy-ness. Crap. What led him to find this diagnosis? Are there any trials at the big Cancer hospital in Texas?

I am praying double time. And it isn't wrong to be absorbed by what is going on in your life, it is a lot! Holding you close as you face the anniversary of Forest and his Girl. Holding you close for all that you hold in your heart.

 

I have been very worried about my nephew, most of  you know that one of my nephews is addicted to heroin and any other available drug...he is in a bad way...at this point he does not get any help, I hope that he will, I hope he can find a way to receive assistance and get off this insidious drug. In the meantime, my sister is filled with anxiety and fear as her Son, youngest of 7, gets less and less healthy. Lord and Erica, if you can, please assist Matt.

 

BKS, the website is lovely with photos and daily notes...I so agree, it is about finding a way to be present in this day...There are some good books published about losing a sibling. I have a crate of grief books available to my students (teach 3rd grade). It is amazing to see how many kids pore over the grief books, learning about a topic that so very few people teach. I teach about it because it should be taught and because I surely know what it is to grieve. Our school lost a young 5th grader this year to cancer, many of my kids shared the grief books with one another and asked me to read some aloud. I have loss of grandparent, loss of an uncle, a Mom, and of course loss of a pet...it is all part of life, and we need to teach more about it as a part of life, a procession of life. Mattie Stepanak (sp) wrote three or more books about poetry knowing that he was going to die...those books might be nice to read with Becky and Ian. Blessings.

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TearsInHeaven

Laurie- thank you for your thoughts.  When I signed in and saw this it is as if you knew that for some reason this would be a really bad night for me.  I thought I had gotten to a point where I thought my grief, the tears, the loss were a part of my life but tonight it is like there is a dagger in my heart.  All I keep hearing in my head is the hospital chaplain telling me " I am so sorry for your loss'.  Over and over again.

 

I came on hear to read and so many sad stories of life, Dee's nephew, Gretchen's family, BKSCHer72, all of the struggles with the court system and justice many face, why am I caught in such despair.? From the time I was a kid I always felt like I carried this black bag with me.  I kept all of my problems there.  Abuse, ridicule, pain, whatever was in the bag--with me but not overtaking me.  Losing Michael never quite fit in this bag but I was doing my best.  I don't sleep much and I do not eat well.  But I thought it was a part of this as I am sure it has been for most of us here.  But while I have felt like I was at the bottom of a well with no way out, tonight i feel like the floor of the well has dropped out.   The little bit of strength I had is shattered.  I usually try to keep my feeling sorry for myself to myself but this has overwhelmed me.

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Dianne-----I'm so sorry that you are in that deep dark place right now.

At this point....so recent on your journey of grief,  everything is so

harsh, and reality is defeating.  There are no words, really, to describe

it.  Please take care of yourself, and keep coming back here. Sending

thoughts & prayers for your strength.  Peace to you, friend.

 

Gretchen-----Thank you for posting the pictures of your son-in-law and

the dear sweet children. Praying that he will be able to get medical help,

and that all could have a positive result. So very sorry to learn of this.

Also,  prayers for your friend, Lynn.

 

 

PEACE   TO   ALL  INDIGOS.

 

Davey&Lisasmom,   Sherry 

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Dianne,

the bottom of the well went deeper, sometimes it is so...and while down way deep in those catacombs, we find some tiny ray of hope there in the mud and muck, we find some way to go way down knowing that we will climb back up and each time we climb, though exhausted and sad, we find some sort of new connection or new found hope. Let yourself sit in that far away sad place, we are here, we will help you up again if you need it. We go down when we least expect it, but we do rise to the surface again. Promise. And you know what, weeping, wanting to allow your feeling badly is not a pity thing, it is the truest sadness borne to humans, and so we allow ourselves that just as you would have a friend do in a similar circumstance. It isn't self absorbed or self pity, it is deep sadness, it is grief.

 

The light photo that Susan asked for is from a time about a year or so after Erica died, I was wandering on my walk through the forest preserve, the sun had been up for a few hours, and when walking I just said aloud; " Where are you Eri?" At that moment and I am quite sure it was Erica answering my question, the light, the shower of light shone right there in front of me. I photographed it and said, " thank you so much Erica". I had not been feeling her presence in the previous weeks and so this is what she did:

 

 

post-261428-0-29948200-1435955076_thumb.

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Sherry, I believe our stories can be healing not only for ourselves but others as well.  

 

Gretchen, Keeping your daughter Allison and her family in my prayers.

 

Dee, Praying for  your nephew, sending him light and love that he is able to move forward in a positive way.

 

Dianne, Sending you lots of love and comfort.  We all have our ups and downs, just part of life.  Just know that there is love and support for you. Your date is close to mine.  Thanksgiving has always been hard for us since Joseph passed on Thanksgiving Day with our two cousins.  This year will be ten years, and it just doesn't seem like it has been that long.  All we can do is keep them close to our hearts.

 

BKSCHER72 - Praying for you and your family, and your son Ian.  

 

Love and Blessings to all.

post-403104-0-41123800-1435963018_thumb.

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Mermaid Tears

More later...my feet have not hit the ground in the same place in 3 weeks.....for real.....I think I will get a break later tonight...

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FOREST DEAR-

Yesterday was the date marking your leaving this earthly plane and I know that you made your presence felt by all who gathered in your honor. Kiss your wonderful Momma and bless your Family with the goodness you are made of.

 

Gretchen, I hope that you are able to find a quiet place to listen to your spirit. God bless.

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TearsInHeaven

Sherry, Dee and Laural-

Thank you for your kind words and inspiration.  I thought I was holding my own. The grief, the tears, the longing for what I cannot have was at least, while miserable, interwoven in my life to where I was mildly functional.   Not sleeping well, not eating well, first and last thoughts in the day, short cries whenever, it has all become a part of my daily life.  But Thursday night, I truly felt like the gates of hell opened and were doing their best to drag me in.  The deepest, darkest, scariest thoughts were pulling me under.     I know, overly dramatic. Usually, when the sadness comes, I "talk" to Michael and I can pull myself out.  But this time was so different.  I just zombied through yesterday and at one quiet point late in the day my mind--or Michael- whispered to me, " Mom, Dad and Heather need you and eternity is forever."

Today i just feel emptier than usual but back to mostly functional.  I thought I understood the word"sad" until Nov 28 last year. Now it has taken on a whole new concept.  I know you all understand that.Thanks for extending the kindness.

 

Gretchen-  good thoughts and warm breezes across your face as Forest helps you though a most difficult day.  If you see a firework in the sky one will be Forest telling you he loves you.

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Dark place

 

And you thought that a cave was dark and twisted,

Lonely-

what about a heart when one grieves their child?

 

The path is without direction

without light for long days.

We fall and hit rocky walls.

We scratch our stories into rock.

We teeter on the edge of sad intersections-

where loss meets the sunrise-

and we find our way

or we don’t.

 

 

 

Learning to Breathe

 

In and out is it?

Sometimes I forget the out part-

I hold my breath

 

my ribs expand and

I can hear the thumping of

my heart.

 

The rush of blood sounding in my ears,

like urgent footsteps coming

To tell me

that you are gone.

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Jesse David & Taylor Mom

Gretchen, Thinking of you this Angelversary of Forest. I am posting a poem by Robert Frost in honor of Forest today:

Nature's first green is gold,
Her hardest hue to hold.
Her early leaf's a flower;
But only so an hour.
Then leaf subsides to leaf,
So Eden sank to grief,
So dawn goes down to day
Nothing gold can stay.

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Jesse David & Taylor Mom

Dianne, the grief storms will come and go, as well as vary with intensity. I usually make it a light day for myself when I am in that "state", nor do I place any great expectations of myself.

 

I am okay with allowing those feelings to flow...somedays are just going to be like that. Its okay.

 

Speaking this after two children losses, I found that this time, I don't really care what folks may think, most won't be there down the road anyways. Those who are true, will stay.

 

Hugs.

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