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Living with a Loss? Angel Parents check in here..

Living with a little one in your heart instead of in your arms can be full of bittersweet days.  Comfort can be found among other "angel parents".  Living a New Normal is a place to share your days and memories with other parents who understand.

Akeelah's Mommy

762 Replies

  • lvazquez
    I have been trying to figure out what to do with some of my thoughts, so I thought I'd go ahead and put them here. I'm so sad right now and my heart is breaking for a fellow MOD friend whose younger son passed away last week. He had DIPG and was diagnosed last Spring. I met this wonderful lady shortly after my own loss. Her youngest was born just a week or so before we had our angel. Bring a loss parent, I thought I'd know what to write or say to the family. I am at a total loss for words . . .

    Right before I left for D.C. last October, I sent her boys some Lego things. She wrote me telling me that they came at a good time. They had just returned from a treatment abroad and they really enjoyed playing with them:) We'd see her family and boys at MOD events and our kids are really close in age. I'm just heartbroken for her. How much does a family have to go through?

    Lindsay
  • Josie12907

    In reply to cxerophim:

    Welcome to Share, although I am very sorry that you find yourself here. I am so very osrry for the loss of your son Gabriel. I lost my daughter to Trisomy 18 when she was 9 days old, and it was 9 years in January/February. I blog under Angel-versary, and I have found the blog to be very helpful. It has helped me to process feelings I didn't even realize I was still dealing with now. I didn't have the chance for counseling 9 years ago but I believe it could be very helpful. I wish you peace and strength for your journey and your fiance's.
    Brandi
  • Hunter and Randi's Mom

    In reply to cxerophim:

    Welcome to Share. I am so sorry for your loss of your son Gabriel. It sounds like you have found some beautiful ways to honor your son. As you said, everyone grieves in their own way and at the beginning the pain is so raw. Please be gentle with yourself as you grieve. Share is a very supportive place where people understand. I hope you will share more about your Gabriel with us.
    Marissa
  • nmiller77

    In reply to cxerophim:

    HI Welcome to share and I am sorry for your loss. The best advice I can give is take it one day at a time. There were times in the weeks after my son died that I was living minute to minute. My husband and I grieved very differently. He was the more reserved one and basically stopped being social for a long time. I on the other hand wanted to talk about my son Scott and needed to be around others. We went to counseling together and it really helped us. It helped us see how we were grieving differently and how to help each other. It takes time learning your new normal. We are here whenever you need to share. Nicki
  • cxerophim
    Hello everyone. I joined this site because I do a lot of writing and thought this seemed like an active support community for other bereaved parents. I wrote our story up on my profile entitled "The Crucible and Butterflies" but I'll touch on the main points here. My fiance' developed HELLP syndrome in her second trimester and delivered by emergency ceasarian on January 8th, 2016. Our son Gabriel was born at 23 weeks and 6 days gestation weighing 1 pound even. He was the smallest baby in our NICU and fought hard for 17 wonderful days, enduring many different kinds of therapies and medications before passing away on January 25th, 2016 from a staph infection/sepsis. This has been, by far, one of the most soul-crushing, life-altering things that has ever happened to me. It's been almost 2 months now but I still cry just about every day, I write letters to him and poems for him; we ordered many lovely decorations for his gravesite and have assembled a few photo albums which are absolutely precious and I feel like I am moving closer to acceptance, but there are still some things I am resentful of and of course an endless barrage of questions going off in my head, but I am trying to find my "new normal" which is a term I only found in coming to this site. I have an appointment on Friday to speak with a counselor and try to work through some of this, but I'd really like to connect with other angel parents who can relate to the depth of emotions we are feeling. Some days it feels like we do OK, others feel like we're drowning and it's just a mission to keep our heads above water. I've also done a lot of reading (Empty Arms which was provided to us by the hospital and When Bad Things Happen to Good People) and I understand that everyone grieves differently, some people take longer to come to the same point as others, but I truly feel that I am grieving differently than most men with how much I do talk about it, write about it and want to share; whereas my fiance' is much more reserved about it, doesn't like to talk about it and I think she's afraid to break down in public. Any words of advice or comfort would be greatly appreciated, and thanks in advance to everyone else who has shared their story as well. It moves me in the most profound way to read these stories and to know that others have endured this pain and emerged OK, it gives me hope.
  • nmiller77

    In reply to lvazquez:

    I have a friend who has 3 boys. and she is always posting on facebook little pics like you think your tired well try having 3 boys and stuff like that. I HATE those posts. I wish I was that tired and knew what it was like. I want to be exhausted raising two boys. I know she means nothing by it but for someone like me who doesn't have that for her "normal" it stings...and I love the one up comments with how many kids. Sometimes I want to say in response well really I do I have 2 just one of my is in heaven but I don't...but it goes through my head. Sometimes are just harder than others. hugs. Nicki
  • lvazquez

    In reply to Hunter and Randi's Mom:

    At one of the therapy offices last week, a fellow mom friend made a comment like "...because you know with your last baby, you tend to keep them a little closer..." I think we were talking about parenting differences or something. Anyway, when she said those words, she must have seen my face drop or change expression. It couldn't be helped. It sort of happens when you hear things that just go to your heart and stir up the cause of your pain. She noticed it because she looked at me super briefly with her eyes. There was some concern there on her part for me, but I didn't share and she didn't ask. Mothers are so intuitive. She's a sweet lady. She meant no harm, but it's comments in general I guess that just floor me sometimes and make me pause.

    Another one was last month. I went in for a site visit for this trial my son is doing. The guy doing a little observation of us starts talking about this and that. He asked again how many children I had. Gulp. I said two. Then he starts in and says, "Well, I have THREE..." In my head, I'm a screaming! Yes, you win! You're living THREE trump my TWO! Got it!!! People don't mean it, but sometimes that's how it comes off. Like, I am not as busy as you are because I only have two and you have more. More means busier. More means I can't understand. More means I can't even begin. Yeah, I don't know. Would have been nice if things had been differently, huh, researcher man?! I dream of what normal looks like. I don't know it. I don't think I've ever known it. I won't ever know it. My life is not normal, but it is my new normal and it's here to stay. I am still learning to accept these cards. Some days, I want a new hand, but most days I'm content with the good and not so good cards I've been dealt. I feel like I get nutz as we get inch closer. This is normal though, right?

    Lindsay
  • Hunter and Randi's Mom

    In reply to Momliz:

    Hi Momliz. Welcome back to Share. I am so sorry for your losses of your sweet angels. I just read your story and it brought tears to my eyes and reminded me a bit of my own. My daughter was born at one pound three ounces and passed away at three days old as I held her for the first and last time. I will be keeping you in my thoughts.
    Hugs,
    Marissa
  • Momliz

    In reply to lvazquez:

    Thank you Lindsay I appreciate it. I was a member years ago now I'm back. Hugs!
  • lvazquez

    In reply to Momliz:

    @Momliz, I'm sorry for the reasons that have brought you to this site, but know that you're not alone and this is a great place to put so many feelings. Hugs!

    Lindsay
  • Momliz

    In reply to lvazquez:

    I'm new here just checking in
  • lvazquez

    In reply to grandmamary:

    Thank you Grandma Mary and Tracey:) I'm not sure why so many things seem to have to hit all at once. Putting my big girl pants on dealing with a few things. The holidays sure can be challenging. Love to you ladies and I appreciate the virtual hugs:)
  • grandmamary

    In reply to lvazquez:

    Lindsay, sorry yesterday was such a frustrating day. I hope you are not beating yourself up for "losing" it. Life is difficult. It seems even worse when we are trying so hard to make sure our kids are getting the care and services they need. Sometimes I would have to step back a bit build up my strength and then go back into the ring.
    I hope today is better.
    If I were there I'd give you a hug and a shoulder to cry on-or maybe a pillow to beat the frustration out on! : + )

    Grandma Mary
  • lvazquez

    In reply to nmiller77:

    So yeah, today was tough. It just sort of hit hard today, those feelings of loss. While I feel like I am holding it together most days, I unraveled a bit today. I'm finding that I'm getting really frustrated with certain things and some people (some of my son's therapists). I'm trying, but my "food bar" is running low.

    Lindsay
  • nmiller77

    In reply to Hunter and Randi's Mom:

    that is so sweet and something I am going to remember. =)
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