Because the concept behind From a Lullaby to Goodbye is to open and encourage communication about child loss and to find comfort and support in our times of deepest need, I’d like to encourage the visitors to this website to share their child, grandchild, niece, nephew, or the little one they cared for here. Please take a moment and let us know about your child. Who was he or she? How old? How did their life and death impact you? The co-authors of this book will be reading and responding, providing resources or contacts, if you need to speak with someone who has a similar experience.
We know that there are thousands and thousands who will never forget the child who graced their lives. By sharing them with us, we can all celebrate their short lives together, while remembering them forever.
Patti McKenna
From a Lullaby to Goodbye 
March 16, 2011 at 1:48 pm
My Lily (Lilith Faith) was 13 days old when I woke up and found her cold body next to me. We had fought hard for the pregnancy to stick and for her to make it anywhere near term (she was born at 36 weeks, after 8 weeks straight on bedrest, and two other bedrests earlier in the pregnancy)….
She was so stubborn and loving and happy and one of the loves and lights of our life, she was my first bio child, though the third for my husband. She was adored by everyone who met her, and by those who didn’t, but saw her photos online, or saw her via our video calls. She was completely loved, and she loved completely.
She got her father’s and my stubborness, and was taking after her older sister quite a bit. She looked like an incredible mix of my husband and I.
She made my life a brighter and happier place, and the world has become darker and more sad without her.
March 16, 2011 at 1:57 pm
Autoimmunelife: It is so hard. I know. My son was 14 days old, and what I’d give for one more day. If you’d like, email me a photo of Lily and I’ll be happy to post it here so you can share her beauty and personality with us. The one thing that I know is that she left an impact on you that will last forever. It’s not just a forever sadness, but also a blessedness and a tenderness that only she could bring to your life. Hold tight to that. Email me at PcMcKenna6@aol.com if you want to share a photo – or you can insert a link where people can see one!
March 17, 2011 at 1:11 am
Your sweet baby girl Lily and her stubborn spirit will never be forgotten. Her love and light lives on. I was reading just last night about how important it is to go to the dark and sad place and allow yourself to feel those feelings so that you may travel through your grief journey. You are not alone on your journey, there are many others who are on a similar journey. I find it is easy to feel isolated by loss and grief, because we feel like no one really knows what we are going through. But it feels so good to be truly heard, especially by someone who can relate to your sadness. I hope you are able to find good listeners.
Sarah (Co-author)
March 17, 2011 at 1:29 pm
I’m glad you found this, Autoimmunelife, as sharing the stories of our angels will never stop providing a sense of bittersweet joy. And although Lily’s earthly stay was brief, I know you’re thankful for it.
Our angel, Jeffrey, was two months old when we were told he wouldn’t be around for his second birthday and less than six months old when he earned his wings. While I would never have volunteered for ‘angel baby’ duty (although what an honor!), there have been untold blessings from our assignment. I don’t understand God’s thinking at times, but I’m confident He knows what He’s doing 🙂
Your sweet Lily has left an impact on your lives – and others’ – that couldn’t have been left any other way.
I hope you and others who share their stories DO send Patti pictures!
Helen Baldwin, mama to Jeffrey, who died of spinal muscular atrophy (SMA)
March 17, 2011 at 1:46 pm
You can see photos of Lily at the link below. She was beautiful, precious, and sooo tiny (the photo in the car seat shows this). You were lucky to have her in your life, and you still are. http://autoimmunelife.wordpress.com/2010/12/29/littlest-pictures-up-to-1-week/
and
http://autoimmunelife.wordpress.com/2011/03/11/its-been-a-little-more-than-two-months/
March 17, 2011 at 11:05 pm
autoimmunelife, I’m so, so sorry for the loss of your precious Lily. How truly devastating. I have no doubt she brought you so much joy and you loved her so very much.
March 16, 2011 at 2:50 pm
My son Skylar was with us outside the womb for only two hours but was a huge inspiration to us. It has been just over two years now and he continues to inspire us. My wife makes blankets to donate to hospitals for others in similar situations and I am a photographer who captures final memories of these children who change the world forever. His heart valves are currently at the New England Organ Bank awaiting a child in need. We take comfort in the fact that someday we will all be together again with bodies that won’t die. We are thankful to God for his mercy and the many blessings he has given us and how he has shown himself to us in so many way.
Randy Morris, father of Skylar Dylan, who died of Potter Sequence on January 6th, 2009.
[img src=”http://littleonescalledhome.org/files/_MG_9491.jpg”]
March 16, 2011 at 2:56 pm
Randy, your story is a wonderful contribution to the book. I have a first-time mom-to-be that is waiting til Monday to order a copy. Her baby’s organs aren’t developing; I immediately thought of Skylar and your experience.
March 17, 2011 at 1:36 pm
Randy, my daughter graduated in May from college with a photography degree; she’s now 21 and assisting a couple of photographers in addition to working in a photo gallery. I’m sending her the link to your web site, and I’d also like to include it in the Resources section of the next revision of The Jeffrey Journey, a book I wrote about our brief time with our own angel. I don’t have a date for that yet, but I’m always on the prowl for new resources… and yours would be perfect.
Thanks so much for sharing your story. Skylar must be beaming at the blankets your wife is so graciously making and donating in his memory and at your work 🙂
Helen Baldwin, mama to Jeffrey, who died of spinal muscular atrophy (SMA)
March 17, 2011 at 1:50 pm
Helen and Randy, what a wonderful way to work together! I love how the connections we’re making are impacting our lives. You’ve all touched mine.
March 17, 2011 at 11:06 pm
I’m sorry for the loss of your son, Skylar. What great things you do to honor him in helping others! I know that other families must appreciate everything that you do. It is comforting to know that this world isn’t the end.
March 17, 2011 at 3:32 pm
Randy, I read your story and I commend you. I am also a coauthor and I lost my son, Angelo, to SIDS September 15th 2008. He was 2 1/2 mths old and I have over 1000 pictures of him, as you can tell he was my first born! I can’t imagine though not having those 2 mths with him and the pictures that we have are like gold. For you to provide that service to other families who didn’t have the privilege of spending more than hours with their baby is amazing. As hard as it must be for you and your wife I’m sure Skylar is thanking you and is so proud. As you know, losing a child is such a taboo subject and many people do not know how to react or they just act like the child wasn’t there. You provide them with comfort and help them to understand it is ok to have pictures and I am sure they thank you every time they look at the pictures of their precious angel that you provided them. I have Angelo’s pictures displayed all over my house and I show his pictures to his little brother all the time. I never want him to be forgotten. He is a huge part of our lives and always will be, I tell people all the time don’t be afraid to speak his name, he was here and made us very happy for that short time. Now he lives through us by what we do to help other families!
Adrianne Cruz, coauthor, mother to David Angelo Cruz who passed from SIDS
March 17, 2011 at 3:41 pm
This helped me so much because I could relate to every number on this list. This is good to even print out and give to friend’s and family members to help them understand better. They will appreciate it.
A Bereaved Parent’s Wish List
1. I wish my child hadn’t died. I wish I had him back.
2. I wish you wouldn’t be afraid to speak my child’s name. My child lived and was very important to me. I need to hear that he was important to you also.
3. If I cry and get emotional when you talk about my child, I wish you knew that it isn’t because you have hurt me. My child’s death is the cause of my tears. You have talked about my child, and you have allowed me to share my grief. I thank you for both.
4. I wish you wouldn’t “kill” my child again by removing his pictures, artwork, or other remembrances from your home
5. Being a bereaved parent is not contagious, so I wish you wouldn’t shy away from me. I need you now more than ever.
6. I need diversions, so I do want to hear about you; but, I also want you to hear about me. I might be sad and I might cry, but I wish you would let me talk about my child , my favorite topic of the day.
7. I know that you think of and pray for me often. I also know that my child’s death pain you, too. I wish you would let me know those things through a phone call, a card of note, or a real big hug.
8. I wish you wouldn’s expect my grief to be over is 6 months. These first months are traumatic for me, but I wish you could understand that my grief will never be over. I will suffer the death of my child until the day I die.
9. I am working very hard in my recovery, but I wish you could understand that I will never fully recover. I will always miss my child, and I will always grieve that he is dead.
10. I wish you wouldn’t expect me “not to think about it” or to “be happy”. Neither will happen for a very long time, so don’t frustrate yourself.
11. I don’t want to have a pity party, but I do wish you would let me grieve. I must hurt before I can heal.
12. I wish you would understand how my life has shattered. I know it is miserable for you to be around me when I’m feeling miserable. Please be as patient with me as I am with you.
13. When I say ” I’m doing okay”, I wish you could understand that I don’t feel okay and that I struggle daily.
14. I wish you knew that all of the grief reactions I’m having are normal.
15. Depression, anger, frustration, hopelessness, and overwhelming sadness are all to be expected. So, please excuse me when I’m quiet and withdrawn or irritable and cranky.
16. Please excuse me if I seem rude- certainly not my intent. Sometimes the world around me goes too fast and I need to get off. When I walk away, I wish you would let me find a quiet place to spend time alone.
17. I wish you understoond that grief changes people. When my child died, a big part of me died with him. I am not the same person I was before my child died, and I will never be that person again.
18. I wish very much that you could understand- understand my loss and my grief, my silence and my tears, my void and my pain. BUT, I pray daily that you will never understand.
March 17, 2011 at 11:07 pm
Thank you for sharing this, Adrianne!
March 17, 2011 at 3:48 pm
Adrianne, Those 18 items are so true and worded so very well. Thank You!
March 17, 2011 at 11:15 pm
Holly, mommy to Carleigh, born still from anencephaly
My daughter’s 2nd birthday is approaching on March 28th. I can’t believe it’s been almost 2 years since her birth. I still miss her so much. I’m so glad that she was mine though even though she only lived inside me. I wouldn’t trade her for anything!
June 24, 2011 at 5:50 am
I lost my twin son, Dalton 3 days after his birth while in the NICU. We had a photographer from “Lay me down to sleep” come and photograph us at the funeral home and those pictures have become a piece of my heart. i too find people want to act like this tradegy didn’t happen because they are uncomfortable with sadness and loss. Dalton’s death has changed our lives and we will forever honor his life through pictures and our symbol for him which is butterflies. I got a butterfly tattoo on my shoulder in his honor.