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Need ideas for my sister!

mimisgirl

mimisgirl

It's all about ME!
Joined
Oct 27, 2012
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Hey guys! This has been a rough month for my family, and very sad in so many ways.

The main thing we are dealing with right now, is my youngest sister. She is about 25 weeks pregnant. They went in a few weeks back for their anatomy scan ( to learn the gender) and came home with the knowledge that their little girl has trisomy 13.

The past few weeks have been full of appointments, tests, scans, etc. Each one shows a bleaker outlook on the situation. The baby is doing fine for now, but has some significant formation issues ( intestines are outside her body, too many fingers, missing facial features, and something is not right with her brain, but they are unsure what exactly, etc.)

At this point the doctors don't expect that she will live long after birth, which breaks my heart in so many ways!

My sister has been very brave. She has cried a lot, but is also celebrating every moment of this pregnancy, and talking about Hannah (baby's name) each step of the way. I am so proud of her. I don't know that I could be that strong.

So my question is - what can I do for my sister and her family? I feel like some of you have experienced this kind of thing in the past and would really like to know what you think the best way to reach out, serve, and love them will be. What are your ideas?
 
I am just weeping reading about how much love you have for your sister and your sister has for precious Hannah. I think a sit down with sister and tell her, I want to be a help, and don't know what to do. Please help me help you.
 
Oh, Erin. I don't even have any words. I can only imagine the pain ya'll are going thru.
I have no advice. Just hugs and prayers.
 
I think Hannah has an AMAZING family and your sister is lucky as well.

I know this is going to sound weird, but please hear me out.

When my first son died, we had a wake. My whole family was falling apart and I had to be the strong one even though it was MY child. I was lost and tired. Neighbors came over to say they were sorry and offer support. Some brought food, some brought groceries, but one lady brought me a plant.

I. was. seething.

She brought me a plant.

Now, keep in mind, I'm the type that if you brought me a hug and just listened, that would be more than enough. Little things mean a ton to me. But to me, this lady had been thinking "hey, you can't keep a child alive, good luck with this plant."

I hated it. I was angry. I wanted the plant to die, it was a reminder that I had failed. Deep down inside, I can never truly hate anything. I could never truly be angry. I end up letting it go. So when the plant started wilting, I wanted to water it, but I was still bitter so I watered it with soda. It came back to life. I was .. weirded out, but went about my way. It wilted again. I watered it again with soda. This continued four times before my heart stopped being cold. I watered it with water.

I've been through several moves, several cities, several states, halfway across the country. I have three of those plants from different cuttings. It's my piece of Gaige. It's my moment in time with him. It is one of my most prized possessions.

Spend time with them, with your sister, do what you can. BE there, just listen to what she has to say. Don't offer advice, don't offer suggestions, just let her cry or be joyful. SHARE her emotions, hold her, let her feel and process. Find a plant that is easily kept alive, doesn't need much to flourish, get her a small version of it and tell her it's for Hannah. It's part of Hannah's fighting spirit.

Just an idea, and super hugs!
 
My sister in law had a baby, Isaac, born with anecephaly. He lived just over a week. We didn't do much different through the pregnancy than we would have normally (ask how she was, ask how Isaac was, take photos of her growing belly, etc.) But we did each sock away money. We didn't buy outfits or diapers, but my mother in law took her to the store to buy something special just for Isaac to wear. She was also close enough to chat with my sister in law and brother in law about their wishes. The prognosis for Isaac was he may not survive being born, and my mother in law is good at blunt, honest, and kind.
When the time came and he passed, we were able to take the money socked away and pay for the funeral. Insurance took care of the hospital bills, so we took care of the funeral and casket as a family. That way, they didn't have the financial part hanging over their heads.
As far as his life, we took photos, and celebrated him. The parents were prepared, and knew they just wanted to enjoy his love at home. We visited and held him, but gave them the space desired to be a unit and grieve.
 
My neighbor just went through this in her pregnancy and I had a hard time knowing what to do too. I think just reaching out to her as often as possible to talk about it is the best, and not just now during pregnancy but especially after.
 
How heartbreaking. I am so sorry :( My thoughts and prayers are with you all.
 
I have no words. Sending Love and Prayers for you all!!

Huggles!!
~Sarah~
 
Serena said:
Find a plant that is easily kept alive, doesn't need much to flourish, get her a small version of it and tell her it's for Hannah. It's part of Hannah's fighting spirit.

Just an idea, and super hugs!
Click to expand...

Thank you for sharing this! It is such a super idea - and one I think she will also love. She likes plants - especially trees.

And can I say that I am so sorry that you had to be the strong one! That is not fair for you at all! Hugs and thank you again!

bestcee said:
When the time came and he passed, we were able to take the money socked away and pay for the funeral. . . .

As far as his life, we took photos, and celebrated him.
Click to expand...

I have been thinking about this - the funeral - as well - and I think I might talk with the rest of our family about that.

and I have to say I LOVE the way my sister is already celebrating Hannah's life - even before she is born. She has been going on special outings with all the kids - they went to the zoo this week - and taking a picture that includes her belly - with captions like "Hannah's first trip to the zoo!" It makes me cry every time - but it is her way of making sure Hannah does not get forgotten, no matter what! I think I might compile all those photos into a simple scrapbook for her (she does not scrap) so that she can keep them all together.

Thank you guys! It can be hard to think through these things when it is so close and I feel so emotional about it - so it really helps to have others that can help with ideas. I really do appreciate it!
 
Oh Erin, my heart is aching for your sister and your family and sweet little Hannah. I think that Serena and Courtney gave some awesome advice to think about. I also remember reading about photographers that volunteer their services for families that have babies that do not survive (I just looked for it online) - it's call Now I Lay Me Down To Sleep...I don't know if it's something that she would be interested in...but I remember seeing the most beautiful pictures of the parents and their babies...it may be something that she would come to cherish.
 
My heart hurts for you and your sister. I really do not have advice besides what has already been offered. When you feel like you need to call her or talk to her, do it. Just remember her. I know for a dear friend of mine she appreciated when people actually talked about her daughter after she passed. She wanted her to be remembered. She didn't want them to tip-toe around her and not mention her dear daughter's name.
I love you idea of a scrapbook. It may be emotionally difficult for you and for her when you gift it to her, but it will be cherished. I have had 2 of my little ones go through extended stays in the NICU and surgeries and birth, and putting those memories onto a layout were incredibly difficult (one I waited almost 3 years to attempt it), but so healing and helpful. I think your scrapbook for her will be the same.
 
Oh Erin, this is just heartbreaking. I've read about volunteer groups who put together memento boxes for new parents who have lost their babies. You might be able to find some ideas for those on line and create your own. There was also a thread recently re. creating infant burial and christening gowns from the mother's wedding dress. I'm sure no matter what you decide will mean the world to your sister. Hugs for you and your family.
 
Erin, I can't imagine what you and your sister are going through. Know that I will join you in prayers.

I think that your idea to help document and scrap Hannah's life is beautiful. You could even do a shadow box with little items and photos that she can display. Hugs! Wishing you peace & wisdom!
 
I am so sad for your family. Losing a baby is one of the toughest life events...

My niece died when she was 7 weeks old, unexplained cot death (her name was Erin!). The biggest regret my brother and sister in law had was that well meaning family members entirely planned her funeral. In the end they felt they had no say in it and there were things done differently than they would have had it. It is such a hard time so just listening to the wishes of your sister is the best thing you can do.

Also a little print of her foot and hand either in a plaster mould or just an ink print is a special reminder of her that can be framed and cherished. You can buy kits to get for your sister.

Hugs xx
 
Serena said:
I've been through several moves, several cities, several states, halfway across the country. I have three of those plants from different cuttings. It's my piece of Gaige. It's my moment in time with him. It is one of my most prized possessions.

Spend time with them, with your sister, do what you can. BE there, just listen to what she has to say. Don't offer advice, don't offer suggestions, just let her cry or be joyful. SHARE her emotions, hold her, let her feel and process. Find a plant that is easily kept alive, doesn't need much to flourish, get her a small version of it and tell her it's for Hannah. It's part of Hannah's fighting spirit
Click to expand...

You have me crying, I have no words for how hard these situations are!

I agree with just being there for her. Let her take the lead and I agree with not giving advice or suggestions. Just be the person she knows she is safe to go to when she needs to.
 
I am so sorry to hear this Erin. The only one I know who experienced this was my late mil. 30+ years later she still remembered that little girl who died at 3 months. Your heart and head will work together to know what to do, say or not do or say. Trust and love.
 
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