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Parents of lost babies and potential of all kinds: come here to share the technicolour, the vividness, the despair, the heart-broken-open, the compassion we learn for others, having been through this mess — and see it reflected back at you, acknowledged and understood.

Thanks to photographer Xin Li and to artist Stephanie Sicore for their respective illustrations and photos.

parenting after loss > She said his name

For brief background, we lost our son at 5.5 weeks old in August 2012 because his lymphatic system didn't form properly and therefore created all kinds of fluid issues throughout his body, ultimately causing pulmonary hypertension and chylothorax leading to heart failure. We moved him to hospice when he was 4.5 weeks old once his incredibly rare genetic condition was confirmed and we realized nothing can fix all that was wrong in his body. He was beautiful and perfect looking and seemed so strong at times, but his body wasn't perfect.

We went on to have 2 rainbow girls a year after he died and then again 20months later, which I am profoundly thankful and grateful for. They are both healthy and bring us so much joy. I have a necklace that was given to me while Griffin was in the NICU and I still thought he'd make it, though with some life-long medical problems most likely. It has his name engraved on it, and later the charm was added to a necklace my husband gave me for our anniversary, the night before Griffin was born. (The timing of it all seriously sucks and I will never look at our anniversary the same again.) I didn't take it off until sometime after Elise was born, 3 days before the anniversary of his death, and she started playing with it and tugging on it while nursing. Anyways, both of my girls love playing with this necklace still and notice if it's on/off now. I've told my oldest and now started telling my youngest (9months old) that it's my Griffin necklace. Last week Elise, 2.5years old, said "Griffin" for the first time and has repeated it now when she sees and plays with my necklace. And I have told her before, but only now is she understanding sort of, that he was her brother, and then she has said, "brother." I'm sure it's confusing because when we talk about her sister, she actually sees her sister, but obviously there's no brother around. I also tell her that mommy misses him very much, usually through teary eyes.

This has been a very special thing for my husband and I, but also kind of hard. I don't know how we will handle explaining this to them and having him be part of our lives moving forward. I don't know how we will handle when they inevitably talk about him at school or to strangers. I guess no one knows how they will handle these things until they are upon us. I wish there was a way for the girls to only talk about him at home, where we are sort of protected, and not out in the world as they each start talking more (esp the older one right now obviously). It brings me so much happiness to hear her say his name. It almost feels like a miracle for some reason. How have any of you handled subsequent children, or even really young siblings that didn't understand the loss at the time, learning about their brother or sister that died?
February 9, 2016 | Unregistered CommenterJessica - Griffin's mom
Hi Jessica,
Someone posted this here a couple of years ago and I just loved it:

Our older daughter (now seven) was just three when her eagerly awaited younger sister was born and died at 32 weeks from complications due to Trisomy-13.

My husband and I let her know that she could talk to and talk about her Sissy whenever she wanted. She is a big part of our family, and a fact of our family life and history is that she died at birth, and one does not preclude the other. So missing her, celebrating her, and including her in all of the ways we can honors the truth of our family. I think open dialogue, and not treating the missing sibling as a secret or hidden history goes a long way in helping living siblings cope, and also helps them be assured of the strength of their parents love for all of the family's children, themselves included.

I am so very sorry for the loss of your dear, brave son. I wish you and your family love and peace,

Jen (AdiaRose and Imani's mom)
February 9, 2016 | Unregistered CommenterJen
Jessica - bittersweet moment! Heart squeeze. Damn, I just wish we had them here, alive. This struck me as I have a special Mira locket (as many of us do for our babies) and IIO plays with it and every once in a while I will open it so she can see her sister's picture. She is only 9 months so she hasn't said "Mira" but I will surely bawl when she does. ----- Are you the Griffin's mom who wore fancy underpants to shake your fist at AF?------ Sweet Griffin. Such a tough cookie, and so loved.

Jen - how are you??? What's up? Long time no see old friend!
February 11, 2016 | Unregistered CommenterKO
Oh Jessica! I am here too!!!

My eldest living daughter has just turned 6. She was just 2 when we lost Shelby. When I became pregnant with her 2nd rainbow brother she was 5 and much more aware. The conversations included Shelby more and more as she asked questions about the birth order of our children. She wanted to know everything about Shelby and I couldn't handle it (being pregnant with a rainbow I just couldn't face explaining all the details). My husband did the leg work and my daughter talked about Shelby more and more which was both beautiful and heart breaking. I am so glad she wants to know about her sister but it is so hard reliving some of the details. And when she asked to see photos I was torn between wanting to let her and not wanting to scare her. '

Last week she came home with a questionnaire from school asking about siblings. I asked her "How many brothers do you have?"- she said "2". I asked " how many sisters?" She said "none" and although my heart broke a little that she didn't want to acknowledge Shelby I was also a little relieved that she wouldn't have to explain, have to dodge questions and deal with people at school not understanding if she said she had a sister who died..

We walk a long and tough road Jessica, you aren't alone. xx
February 12, 2016 | Unregistered CommenterShelby's Mum
My almost-3-year-old knows she has an older brother named Jack who died. She calls him 'your baby Jack' to me sometimes. When the daycare had a week to bring family photos and talk about them, I printed and labeled a picture of Jack's footprints. This way they know about him and I expect them to acknowledge him as her brother and know what she's talking about if she mentions him. (It sucks that his name became really popular around the time he was born and she has classmates with the same nickname. We chose it about 10 years ago, before it was topping the charts.)
February 16, 2016 | Unregistered CommenterJM
Thank you ladies, for sharing your stories and thoughts. And Jen I just adored that post, and cried through a lot of it. I find so much comfort here among you all. It's nice not to walk this road alone.
February 23, 2016 | Unregistered CommenterJessica - Griffin's mom