I'm not sure what I am even posting. I am just having such a hard day today. My little girl has Leighs Disease. She is dying and there is nothing I can do. I'm trying to enjoy her while I have her, but I just haven't been able to. I just cry every time I look at her. I know this pain is nothing compared to the pain I will feel when she dies, and that terrifies me. I can't imaging this hurting any more than it already does. I honostly don't think I can handle this and I have know idea how I'm going to make it through this.

Mom to GGG triplets born 2/7/09 at 30wks, 1 day

Andi Elizabeth - 2 lbs, 9oz
Bella Ryan - 1 lb, 11 oz
Piper Kate - 3 lbs, 4oz - Diagnosed with Leighs Syndrome 01/2010. Passed away on 01/16/2011.

Belnida,

I read your post on the main board a couple of weeks ago. You and your family have been in my thoughts and prayers every day.

I can't even begin to imagine what you are going through. Just thinking about it is heartbreaking. Living it has got to be incredibly painful.

My baby girl passed away when she was only 2-1/2 days old. It doesn't even compare to what you are going though so I don't really have any advice - just wanted you to know that others are keeping you in their thoughts.

It might help later on to have lots of pictures. I'm very sad that I did'nt have any photos of my Alex before she passed away.

There is an organization called Now I lay me down to sleep - that offers photography sessions and other types of assistance and support. http://www.nowilaymedowntosleep.org/home/

In the past, I have created some slide shows for families who have lost their child(ren). If you want help with something like that feel free to contact me through this site.

I wish there were more I could do or say to bring you comfort.

http://www.brianandcharlie.com/blog
^Alexandra^, Brian, Charlie 07/28/2003
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I am so sorry to hear about your little girl. I have ggg triplets and it breaks my heart to think about one triplet being terminally ill. I also know what it is like to have a dying child as I lost a toddler to cancer in 1994. I know how hard it is going to be but I am sure you will find the strength to be able to do it. You may find it hard to enjoy the time you have with her but what you can do is focus on making her short life as good as it can be. That is what I did for my son and I am left with many good memories of him. Take care - I will be thinking of you.

Nettie
mom to ggg age 10
big sis age 14
^big brother^

I've been following your story for a while and am just heartbroken for you. I only spent one day knowing my son was dying and it was unimaginable. I can't fathom living every day like that. I wish I had something positive and inspirational to say to you, but I don't. Just love your kids. Take lots of pictures of your kids together; they'll be invaluable to you and them someday to validate their identity as triplets. And video, of course.

No one can handle this or has any idea how to make it through. You go minute by minute, or second by second, and your kids will keep you going. For me, it hasn't gotten any easier, just different, as time has passed. It's not fair and it's awful and I'm sorry that you have to be a member of this "club." But we're all here and this is the best place to rant and rave and vent and not fear judgement. Unfortunately, we all understand.

I'm so, so sorry.
Amanda

I wish I could tell you it was going to be easy, but why lie? Your situation sucks. The only advice I have is give/get lots and lots of kisses and cuddles, time with her sisters, adn a billion pictures.

My biggest regret is that I never took a picture of my son with his brother and sister. I should have done that the day I knew how sick he really was.

That being said, take it one moment at a time. Nobody can tell you how to do this. It is your new reality, and will forever change things.

And we here on this board, as well as many others, are thinking of your family, and here for you if you need anything.

Erika

Editted to add: I re-read your post; and you are right: the pain you will feel when she passes will be mind-numbingly intense. I will never forget the depth of the pain as I held my son while his heart stopped. But what I focus on is that I did GET to hold him at that point. He knew nothing but my undying love for him at that moment. It is the most painful thing you will ever experience, but focus on the small blessings that are in and around every bad situation.

Mom to:
Matt (1991) Megan (1994) and ^Eric Jr^ Levi and Vivian (2003) at 26 weeks
http://survivingtripletsandteens.blogspot.com

I have followed your story as well and I wish I had something to share that would make your days easier but I don't. I can't imagine what you are going through. I think most in your situation would be crying everyday. Try not to be so hard on yourself, you are going through an unimaginably painful situation.

The only advice I have is what others have said, take lots of pictures, especially ones with your three girls together, cherish every day you have her and make lots of special memories that you can have to look back on.

We are all here for you and would do anything to make your days a little easier.

Take care,

Jessica
Mom to Parker, McKenna, ^Hadley^ born 10/9/07 28w5d
little brother Sawyer
and big sister Ashlyn
www.fourplusanangel.com

I've followed your story too and it just breaks my heart. I only had two days of knowing that my son was going to die so I can only imagine how taxing this is on you.

I found a website recently for parents who are experiencing the loss of a child. I have to admit that I have not looked really carefully at it because it is painful but there are some good ideas for things to do in the remaining time you have left. I wish I had known about it two years ago. Here's the link if you care to take a look:

http://whisperedsupport.blogspot.com/2009/01/welcome_23.html

You certainly don't need any specific reason to post here. "I'm having a bad day" is reason enough and everyone here will understand exactly what you mean. I am so sorry you are having to go through this. You'll find plenty of support here if you need it.

Allison

Mom to:
Madeline 09/2001
Jack, Evan & ^Alex^ 03/02/2008 @ 26 weeks

Belinda,

I am so sorry. It is totally understandable that you cry every time you look at her, thinking of what is inevitably going to happen.

If you can, try and set aside a certain time of each day that is specifically for crying and screaming and doing whatever else you need to do - maybe at night when you go to bed, or when you're taking a shower, whenever, it can even change every day. That way you can mourn, but still enjoy your time with Piper. Don't try to squelch it, but it helped me to try and contain it to certain periods, so that my days were not consumed by it.

You will get through this, and you will get through what is to come. I know that you can't fathom it, but you will. Sadly, I think everyone here can attest to that; somehow, you find the strength.

Amy

Julia, ^Caitlin^ (stillborn due to encephalocele complications) & Gabrielle
30 weeks, 2 days

We're Marching for Babies!

http://www.marchforbabies.org/asmaio

Amy,

That is such good advice; the part about setting aside time to cry scream or whatever. I had totally forgotten those stolen moments of being able to go in the shower, let my guard down and cry without feeling the need to be strong for DH or my other kids...

Erika

Mom to:
Matt (1991) Megan (1994) and ^Eric Jr^ Levi and Vivian (2003) at 26 weeks
http://survivingtripletsandteens.blogspot.com

Yes!

Why is crying in the shower so therapeutic? I don't know but it really, truly is! Belinda, I'm glad you found your way to this group - you will find unparalleled support and understanding. There isn't a situation worse than what you are facing.

You will get through it - you have no choice but to get through this. Are you journaling at all? I would buy a nice, bound journal and begin to write - I don't mean about your feelings - I mean about Piper. Make notes of everything about her - tell her story - everything you can remember, every coo, every smile. I would journal anything she does or her sisters do that you want to remember. Your pain will be burned into your being - it will fade but it will forever be part of who you are. Piper will be forever part of who you are. She will strengthen you in ways you cannot fathom. She will allow you to provide strength for others - as you fight to live your life every day.

Take your current life - not just one day at a time but one hour at a time if you need to - maybe even five minutes at a time. Try, your best, to take care of yourself as well as precious Piper.

You have my heartfelt sympathy, I ache for you (I think all of us here ache for you), come here whenever you need to - you will find love and support from people who are part of a horrible club. It is not a club to which any mom should belong but it is a club with incredibly wide open arms to try and offer you what we can.

Many hugs and prayers to you tonight Belinda. Piper is never far from my thoughts.

Marie

Marie - your reply brought tears to my eyes. Very well said.

http://www.brianandcharlie.com/blog
^Alexandra^, Brian, Charlie 07/28/2003
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Belinda,

I wanted to let you know that we are thinking about you and Piper during this most difficult time.

Dana