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I guess I belong here now - Page 3

post #41 of 140
10/7/07 at 10:16pm
James

Sending you peace, love & strength Mama...
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post #42 of 140
10/7/07 at 10:20pm
There is nothing that I can say to help you. Just wanted to send a
post #43 of 140
10/7/07 at 10:27pm
I lost a Son, Carson Jerome, almost 10 years ago, he was not James age though, he was 2 months old.

I attended SIDS support group meetings for almost a year & they really did help me. I still do volunteer work for the SIDS foundation, in fact today I stood in the freezing cold from 7 am to Noon at Fundraiser for them. They had a slide show of all the Babies that had died of SIDS in our area playing & everytime my Sons pictures came up I started to cry, then I would look at my Mama & Gram & Sis & they were crying too. The pain NEVER goes away but it does get less sharp & jagged.

I talk about my Son alot, I never say I only have 1 Son or 1 Child. I have 2 & he will never be forgotten & neither will James... hes touched my heart already...

Love again & again to you Mama...



Quote:
Originally Posted by RedOakMomma View Post
Not that I want anyone else to have lost a child, but is there anyone else who's lost a child around James' age?

I have so many questions. I guess a lot of them relate to anybody who's lost a child, but part of me was just wondering if I'm the only one IRL or here who's lost a child James' age.

Has anyone here gone to bereavement (sp?) groups for parents who have lost children? What was it like? Did it help? Did going at a certain time, months or weeks or years out from your loss, help or hurt?

How did you handle cremation? James was cremated yesterday, and I had such a hard time with it. We went and sat outside the crematorium and watched the hot hair come from the chimney. They said we could sit in the room itself, it's fixed up nicely, but I couldn't stand to see his body put inside that oven. I just sat outside and watched the heat, and tried to think good things about James instead of what was happening. I didn't want to think about it or be there, but at the same time I couldn't let his little body be there alone.

How long does the numbness last? Was threre a time, some distance out, where all the walls and barriers to feeling finally collapsed and you could just CRY and FEEL it all, finally?

I'm sorry to be talking and asking about such ugly, painful things, but I feel so completely alone about these things IRL. I have friends, very good friends, that are there for me to lean on, but when it comes to this loss all I have is my husband. We talk, and we know we need to work on being especially good to each other, but I also feel like we're heading down blind tunnels. I'd feel better, maybe, if I could talk to someone that's gone ahead of me.
post #44 of 140
10/7/07 at 10:45pm
RedOakMomma,

My heart goes out to you. I know you are looking for someone who has lost a child James age and I have not. Ten years ago I did home health care for a girl with Tuberous Sclerosis Complex and she was such a doll. Please give yourself and your family time.
post #45 of 140
10/7/07 at 11:06pm

I am so sorry for your loss. I have not lost a child that age, but I lost my first baby before he was born. My second was still-born and then revived (it was a miracle).... I am sitting here in tears thinking of your family and remembering how it felt to look over at my little babe lying next to me- the praying for him, the yearning for him to live... and now I glance over and see that same little miracle baby, my own five year old, playing with his daddy... and my heart goes out for you. I am praying for you, Elisabeth, and for your family.

May you find peace.
post #46 of 140
10/8/07 at 12:26am
Thread Starter 
I'm sorry for your losses. So very, very sorry.

I guess there's no logical reason why I'm looking for someone who's lost a "child" (versus losing a baby or losing a teen). Every loss is the same kind of tragedy. I just think that it might feel more similar between moms that have lost a child of a similar age. Again, though, what do I know?

We put together James' memorial video today....just lots of pictures set to music that means something to him and to us. I think my heart's been aching all day. We put the pictures in chronological order, and looking at his life that way I can see how much he changed in the last couple of months...he went from looking like a "little" kid to looking like a big kid. Almost like a young man, really. God, he was beautiful.

I miss him. He had pretty severe special needs, and I used to complain so much (out loud and in my heart) about how hard life was with him and his SN brother. Now I just wish I had that same "hard work" back, because it would mean we have James back. I'm glad he was given a quick, painless death...deaths from TSC could be so much worse...but even feeling grateful for that, I still feel it's a crime to have lost him so young. He was doing SO WELL these last several months, this last year.

We got out our most recent video a couple of days ago. Of course, about 90% of it is of our youngest (19 m.o.). The video pauses on James now and then, and we almost lose our breath because we want those moments of watching him to go on forever. The concentration, the willing the camera to linger, to move toward James, is so strong it's painful.

When he was alive, there were behaviors related to his special needs and autism that drove me up a wall. Stimming behaviors, all kinds of self-help things I had to do for him that he couldn't (spoon feeding, diaper changes, getting him dressed). When he was alive I was so bored with spoon feeding him four times a day, so fed up with the stimming behaviors. Now, just a few weeks later, I'm kicking myself for not getting those things on tape. They were annoying, yeah, but they were a huge part of what it meant to live with and love James. His tapping, his stimmy noise-of-the-month (for a few months now it had been this bizarre water buffalo grunting noise), his funny walk turned to a funny run, the way he'd steal mail and then run away and try to hide with it....all the little everyday things that I wish I could see again. WHY didn't I video that stuff?

His memorial service is coming up this next weekend. I have a list a mile long of "things" I need to do for the service. Why is it that parents who have lost a child need to meet with a caterer or a deli? Why do I need to think about the number of people who will want to eat dessert bars or crackers with dip? Some of the details make sense....figuring out who's going to read what at the memorial, picking out music, putting photos on memory boards....but carrots and celery? really?

Part of James' autism was that he was an extremely picky eater...his range was about 10 foods. Dh and I have been joking that we're going to serve goldfish crackers, whole grain wheat thins, organic whole milk, applesauce, and yogurt at the service. I wouldn't actually do that, but I *do* think that the crackers that go with the dip are going to be whole grain wheat thins. James LOVED those things...I swear, if you looked at a pie chart of "What James Is Made Of," he'd be about 30% whole grain wheat thin.

I miss him. I miss him. I miss him.
post #47 of 140
10/8/07 at 12:59am
Quote:
Originally Posted by RedOakMomma View Post
I miss him. I miss him. I miss him.
I'm sorry mama.
post #48 of 140
10/8/07 at 1:29am
oh, RedOakMama... I am so sorry.

there is a momma here who lost a child close to James' age.

I'm going to go flag her down for you.

I am barely breathing when I read your posts. Cyber does not diffuse your pain, I feel it and want to hug you.

hugs
post #49 of 140
10/8/07 at 2:00pm
Oh my, I can't even imagine...I am so sorry
post #50 of 140
10/8/07 at 2:17pm
I'm so sorry.
post #51 of 140
10/8/07 at 8:41pm
RedOakMama,

Oh my dear, I am so so sorry - I know there is a great big James sized space in your heart right now. That's why nothing else fills it...I have never lost a child, thank earth, but I did have a high-needs child. Not the same, in a milder way, there was a great deal of having to do stuff that was, frankly, boring and repetetive. I think everyone at some point in their kid's life wishes they had paid more attention to the day-to-day. But the truth is, caring for a SN child can be grinding and exhausting. Everyone feels ambivalent about the care kwim? No matter how much we love someone, caring for a sick person can be frustrating and can really really get old. So it's not really surprising and totally understandable that you didn't make tons of records of the day-to-day. But perhaps, eventually, you can write James' story? You are a very good writer, and this is a story people would care about. It would also put his condition in the spotlight. I find writing so healing. Just a thought. I am sending hugs and light.
laoxinat
post #52 of 140
10/9/07 at 12:27am
I am so sorry for your loss, you will be in my thoughts and prayers.
post #53 of 140
10/10/07 at 7:42pm
Hugs to you. My sister just lost her 4 month old daughter to SIDS just 3 short weeks ago. My heart breaks for any mama going through this.
post #54 of 140
10/10/07 at 9:40pm
Quote:
Originally Posted by RedOakMomma View Post
Not that I want anyone else to have lost a child, but is there anyone else who's lost a child around James' age?
Mama, my DD wasn't James' age but I want to answer some of your questions b/c I feel like grief is a universal emotion whether we're talking about children or adults.

Quote:
Has anyone here gone to bereavement (sp?) groups for parents who have lost children? What was it like? Did it help? Did going at a certain time, months or weeks or years out from your loss, help or hurt?
My DH and have never been to a support group or counseling. For us, we didn't feel like enough people could relate to our situation specifically and I guess we just weren't open enough to counseling. My DH is very private and to be respectful of him, we have attended neither. I don't think I could've attended by myself. However, my friend Paula lost her daughter the day before we buried our daughter. Her 2 boys were older than mine (mine was 3 at the time) and they went to family counseling for the first year. Just talking to her, I would strongly recommend family counseling. Her boys dealt w/a lot of anger and frustration during the first year and she could not say enough good things about counseling.

Quote:
How long does the numbness last?
A week or two after my DD died, my friend Jeanette commented that my spirit was gone. She told me what she missed about me and it made me realize how empty I was. When you lose a child, a part of your soul goes with them. A huge part. The numbness (that empty, despairing feeling) lasted months. Not nearly a whole year, but a good part of it. According to my friend, my spirit has come back but I can feel that changed part of me just as strong and I have accepted that I will never be a "whole" person again.

Quote:
Was threre a time, some distance out, where all the walls and barriers to feeling finally collapsed and you could just CRY and FEEL it all, finally?
Yes. The day that I was picking out music for the ceremony and the clothes that she would be buried in. That primal, howling cry and the horrible realization that she was gone just hit me like a ton of bricks. I remember listening to "In the Garden" and my DH was sitting next to me and I literally screamed and screamed and screamed. As I listened to those words, this huge wave of grief rolled over and over and over me.

I was in shock much of the week I was in the hospital and never fully started realizing what had happened until 3-4 days after she was born. I never shed a single tear in the first few days.

Quote:
I'm sorry to be talking and asking about such ugly, painful things, but I feel so completely alone about these things IRL.
Don't ever, ever be sorry, mama. This is reality for you now and talking about things helps.

Quote:
I have friends, very good friends, that are there for me to lean on, but when it comes to this loss all I have is my husband.
You and your DH lean on each other right now. You are the only 2 who can really understand and process the pain right now. You both gave James life and that is a powerful bond.

Quote:
We talk, and we know we need to work on being especially good to each other, but I also feel like we're heading down blind tunnels.
Grief is a scary journey and nobody can tell you how to walk it. Our bereavement nurse told us (my DH and I) before we left the hospital that losing a child can either make or break a marriage. That's very true. If you thought marriage was hard before, add grief. It's a whole new dimension.

My thoughts and prayers are with you, mama, and I pray that your children and you and your DH are drawn closer together during this time. You all need each other in this new journey. I'm only a PM away and I would love to be an ear to listen or a shoulder to cry on. While my DD never took her first breath, I know how powerful that bond is and how heartwrenching to have something so sacred torn from your life.
post #55 of 140
10/10/07 at 11:09pm
Thread Starter 
Thanks, Amy. I'm sure it's not easy to talk about your loss, but to read your experience is such a relief for me....I hope you understand. It's just a relief to see someone else talking about their loss. All the hugs and support are wonderful, too, but after a while it begins to feel like there are two kinds of people....the multitudes that haven't lost a child and can only offer support, and the rare people who have lost a child. Now that I, we, are some of the people who've lost a child, the feeling of there being a wall between us and the "multitudes" of normal families is really strong. Just hearing from someone else who's lost a child makes it all seem a little less lonely. Thanks.

Sending you and your family lots of hugs. ...
post #56 of 140
10/11/07 at 2:03pm
Elisabeth,

My 8 1/2 year old daughter died in June 2006. She also had very significant special needs. I will PM you later today.

Big, huge, hugs.
post #57 of 140
10/11/07 at 4:06pm
I'm so, so sorry, Elisabeth. I will be thinking of James and of you.
post #58 of 140
10/11/07 at 9:58pm
(((Elisabeth)))

I'm so so sorry
post #59 of 140
10/11/07 at 10:46pm
Elisabeth,
It is a special "club" indeed. And one I would gladly revoke my membership from if I could.

I remember the first card I got in the hospital (I was in ICU so no flowers) was from a lady at my Church. She & her DH had lost their only son 20 yrs. ago. The last line of her card read, "I remember that lonely feeling." It's not that, "Oh, I'm by myself on a Fri. night" lonely feeling. It's such a desparate, longing feeling that you would do *anything* on this Earth to get your child back.

Keep talking, mama. I think that others don't understand how important it is to us to talk about our children. It helps us heal and it soothes our soul when our child is remembered. If you ever need ideas on special ways to honor James, let me know. The most healing thing I've done is to make an album for Reagan. It's something I'm very proud of, but have not publicly shared w/many people b/c I am still very protective of her pictures. There isn't a page that's not tear-stained, but putting it together was so therapeutic.

Much love and peace to you, Elisabeth.
post #60 of 140
10/12/07 at 2:21am
I couldn't read this and not post

I am so sorry. You are in my prayers.
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