My sister and her husband welcomed their 4th child, a son, on Tuesday night. He passed away after a short 24 hours. They knew before birth that he had hypoplastic left heart syndrome but were hopeful that heart surgery, or a transplant, would be an option. He was born at a top notch medical facility with leading doctors in this particular heart surgery, but unfortunately he was not a candidate and after a day his heart stopped.

I was extremely lucky because I got to go and meet him and hold him for a few minutes before he died. I was there with my sister and her DH when their son passed away, and they allowed me to stay for his final bath and some photos (of course I left them alone for a few hours after he passed away, while they got to sit and hold him in private).

Anyhow, the reason I'm posting is that I am at a complete loss about what I can do to help my sister. I'm the older sister, and I guess that's why I'm always wanting to fix things for my siblings - sort of gets to be part of your personality. My loss was so incredibly different (was second trimester when Baby Boy C passed away) that I honestly have no idea what to say, do, etc. One of the photos I took of them holding him, before he passed, is pretty nice so I've gotten it enlarged and will frame it for them. In addition to other memorial items, I just feel unsure of what to do.

Does anyone have a good resource for me to use as a guide, as a family member, or that you'd recommend for parents who have lost a child? My sister and her husband are born again Christians (not sure what other way to describe it) and I'm not, so that's often a bit of a tricky exchange, but there must be something appropriate.

My sister doesn't live extremely close - it's about 45-60 minutes away depending on traffic. I guess I could make casseroles or cookies or something. Their other children are ages 4-1/2 years, 3 years and 18 mos. and I have told her I'd come out to stay with the kids if she and her husband need to go do anything....what else can you suggest?

Thanks, and sorry my note is all over the place. I myself am still in some shock and not sure how to grieve. It's bringing up some emotions beyond the sad, sad loss of my beautiful, pure little nephew.


http://lilypie.com>

When we lost our son our family didn't really do anything. I don't think they knew what to do. I would let your sister know that you are there whenever she needs you that way she can reach out to you when she is ready. If that is the case. You could maybe make some meals that she can freeze and eat later so she does not have to worry about that. Did the hospital provide anything for her? When Alex died we got a keep sake box with some pictures they took of him after he passed and footprints. If they did not do that for her you can get a box that she can keep keepsakes in. You can get some jewelry with his name on it or a personalized blanket. I hope this helps. And I am also sorry for the loss of your nephew.

Our little angel
^Alex Joseph^ (11-4/11-5)
Brennan Matthew
Christian Jacob

"
Big brother Justin 8

I am sorry for your loss, and appreciate your response. The hospital was really great about taking photos (gave them the memory card to keep), the nurses also made a name bracelet for him, and put it in a keepsake box along with footprints, handprints, foot impressions, and some other things.

I have been telling my sister to let me help with anything, big or small, and this morning she asked if I would make a display of the foot impressions because I like to do crafts. I will also be getting a larger acid-free keepsake box and making a scrapbook and some other display items. I like the personalized blanket idea - I sew and so maybe I can figure something out to make her myself. I'm also going to do scrapbooks for the grandparents. I saved the newspaper from his birthday, and will put in a few magazines from this month. I also plan to recognize his birthday when that comes around.

It is somewhat selfish on my part, doing these things, because it not only gives me some way to channel my grief for my nephew, but also because I didn't have the opportunity to do some of these for my lost boy (photos, footprints) and it's proving very cathartic (sp?) to do this in my nephew's memory. I, of course, keep these feelings to myself because I would never impose my loss into her grief.

Anyhow, thanks again for letting me know that even telling her I'm here is something. It felt like too little. Hopefully she will continue to reach out and I'm happy she has given me something to do.



http://lilypie.com>

I sent you a PM.

^West Rogers^, ^Keaton Edward^, ^Rebecca Joy^ 1/6/04



Missing their sister ^Maria Jose^ 4/7/04-5/10/04

Thank you, Steff. You are a great friend and one of my favorite people on earth.


http://lilypie.com>

Michelle-

I am very sorry to hear about the death of your nephew. I am sure the crafts will be appreciated. I also appreciate when family displays Lucy's pictures in their homes a long with the rest of the family picture. For example, I gave my mom a tiny picture frame with a baby bell and an "expecting August 2005" for Christmas right after we found out we were expecting and before we knew the journey it would be. She put a picture of my babies together in it, and I really appreciate it. My sister told me at one time that Lucy's picture is in her slide show on her work computer.

One of the most painful things people say is "at least you knew"..for my daughters conditions there were no treatments unlike HLHS. While I am very glad we knew (and am happy to have a conversions on the benefits/pitfalls of knowing a child is sick) saying so minimizes the grief of losing her as a person especially when it is used as a modifier when talking about the death (I have become very angry at my mom over this one).

Before we found out Lucy was ill I had never heard of HLHS. Since we found out Lucy was sick I met a friend whose nephew died of HLHS and my sister has a very close friend whose son has HRHS who is doing marginally well after having had all of the surgeries.

Jane

Since you said that your sister is a christian, if you would feel comfortably purchasing christian themed books for her, the two books that have been the most helpful for me in processing my grief has been Holding on to Hope and the One Year Book of Hope, both by Nancie Guthrie who lost two children to the same metabolic syndrome...the first diagnosed at birth and the second prenatally.

Jane

Blessed with a quadruplet pregnancy
Miscarried quads A and D at 10.5 weeks
Lucy Mae (8/1/05-8/4/05) and Samuel were born 8/1/05 at 36.5 weeks after 17 weeks of bedrest!

I never even thought of the newspaper. I an not even sure that the boys were announced in it or if Alex was either. I don't know if you chrochet (sp) but you could always personlized his blanket that way and I was watching a show the other day where the girl had a blanket made by using a picture so the blanket was the picture.

Our little angel
^Alex Joseph^ (11-4/11-5)
Brennan Matthew
Christian Jacob

"
Big brother Justin 8

Jane,

Thank you for sharing your thoughts and advice - I am very sorry to hear of your loss. I will look into the Guthrie books as a resource for her. I definitely plan to hang a photo of her son on the wall along side the other family photos we have.


http://lilypie.com>

I have collected many of my ideas on my website. I hope it is as helpful to bereaved parents as I have intended it to be. There is a page on there that lists things you/she can do to remember her angel. My absolute favorite thing that I was given was a necklace that has three charms on it with each babies name engraved and birthdates. You will have to double check but I believe it is jules.com. They are very high quality and come in a cute little box. You could get her one with 4 charms for each of her children or just one for her angel. Also, there is a book I received that is so simple, yet beautiful. I have typed out the words of it under the page "books" on my site. It is a small book with wonderful illustrations so my typing doesnt do it any justice. It is called "An infant's journey to God". It talks about a little boy passing and being with Jesus. It is perfect for her.

I hope that you will pass on my site to her and that she finds comfort in the information provided. I think it is wonderful that you are such a thoughtful and compassionate sister...it means everything to have that while experiencing such grief. I am so sorry for your family's loss.

Rachel - mother of four...forever
^Jaxon^ (3/2/07-5/29/07)
^Courtney^ (3/2/07-3/8/07)
^Colin^ (3/2/07-3/8/07)
23 weeks 6 days
www.tripletbutterflywings.blogspot.com
www.themcconathys.blogspot.com
Kenzington Rae 12/26/08
Born at 36 weeks after 5 months of

Rachel,

Thank you for the link and the suggestions. I will look into all of those. I have been looking for poems, along with trying to write my own poem. So far, I have only been able to write a letter to the baby, which I may ask to read at the memorial, or now maybe I'll find a perfect poem on your site. I am so sad today - yesterday I was too tired from the previous night to have any emotions at all. I'm sorry for your loss, and thank you again for sharing your experience and resources on your memorial site.



http://lilypie.com>

I think you have done the most important thing...take pictures so that may have them. I remember my sister asking me if we wanted pictures of my DS in the casket and I never even thought of it. She was kind enough to do it for us and I'm sure it's one of the hardest things she has ever done in her life. When I thanked her she told me it was actually my Dad's idea but he didn't know how to suggest it.

I think food an such is nice, but it's likely they'll have more of that then will need at first. I would wait and in a month or so, after everyone has gone on with there own lives, I'd send over some food, or maybe a gift card to a restaurant for a day when they just don't feel up to cooking.

The stuff you do now isn't as important as the stuff you do later, when seems that everyone has forgotten.

I can also recommend a couple of books that might be comforting.

"Mommy, Please Don't Cry...There Are No Tears in Heaven"- DeYmaz
Beautiful illustrations and perfectly appropriate for Christians. But if she's mad at God right now, I'd wait.

"All God's Creaturs Go to Heaven"- Noel
Good book for the older children, especially the preschool aged one. The premise is that the children in heaven have the special purpose of taking care of pets until they can be reunited with their human companions. "...little children and all of these loving pets have similar souls....Children and animals are both innocent; they need our gentle care, respect and love. Children and animals are two of God's greatest gifts to the world; their love is honest and true."

MonsterMom6
10 year old ^b^ b twins @ 30w5d (1 survivor) and
8 year old gggg quads @ 32w0d

I just wanted to say how sorry I am to the family for the loss of their precious son. I lost my son in May last year, aged 8.5 months to HLHS. He was one of triplets.

My advice would be to just be there for your sister. Whether it's to talk, laugh or cry - and be there for the long haul. My family can't talk about my son, it's never mentioned which is very hard.

She will feel differently every day so having a sister like you by her side will be a huge help. Play it by ear, there's no right or wrong way with this.

Sending huge hugs

Kerri.

Thanks MonsterMom6 and Kerri for your condolences and your suggestions. I have learned that the dinner ministry at her church has sent more food than they know what to do with, so the idea to give a restaurant gift card is a great one, along with the books, and other ideas.

I'm sorry to hear of your lost triplet Kerri, and sorry that no one in your family is able to talk with you about him. Hopefully you will be able to ease them into it by introducing the topic when you feel like it - perhaps they are afraid to bring him up and make you sad?

I have always been the pushy one in my family (no, none of my family were surprised I became a lawyer) so I bring up her son, and probably always will when I want to talk about him. I call him by his name, and I have already told her I'm sending cards each year on his birthday because I think it is important to continue to remember and honor him. I was very happy that she accepted my offer to make a scrapbook, and to provide an archival box for keepsakes. I appreciate the reminder to "be there" later when others have moved on.



http://lilypie.com>

Michelle:

You are a wonderful sister. It is such a blessing that you are willing to speak of her baby by name. You've made it clear to her that she is free to talk about him to you, and this is the biggest gift that you can give to her. Most of the people all of us know do not want to be burdened with hearing about a baby who has died. And, this hurts so very much -- not even being able to talk about the hurt of losing a precious baby.

I am so sorry for the loss of your nephew. Please be gentle with you, too. I know that you lost your Baby Boy C earlier than this, and I understand how this may have made your grief even more complicated since he was not a full-term baby at the time of loss. I'm glad that helping your sister is proving helpful to you, too, and I hope that this comforts your heart as well.

Love,
Cat w/3 Kittens
Caidan, Carina and Caeleigh
Born at 31 weeks, 1/8/04.
It is better to have loved and lost, than never to have loved at all. In memory of Carina, who was greatly loved.

http://b3.lilypie.com/bDA