Sad, but thankful April 23, 2014 5:38 PM   Subscribe

I've had a terrible few months, but AskMefi was there with me and so I wanted to give thanks to all the Mefites who helped me along the way.

From helping me deal with bad news for my pregnancy, to keeping me sane during bed rest after fetal surgery, helping with a little bit of decoration, and keeping baby comfortable in the NICU, and also letting me tell you a great story about a great doctor.

I know I'm not a prolific poster or commenter, but many answers were heartfelt and helpful and some people contacted me through Memail so I wanted to share that after 100 days of life, my baby passed away a little over a week ago. This was the hardest, most awful time in my life, but I think I can say I got through it and it made me better. Thanks Mefi for your part in it.
posted by CrazyLemonade to MetaFilter-Related at 5:38 PM (122 comments total) 17 users marked this as a favorite

Aww CrazyLemonade I am sorry for your loss. I'm glad the community was able to be helpful to you and I hope it continues to be a comfort.
posted by jessamyn (staff) at 5:41 PM on April 23, 2014 [8 favorites]


Oh, no. Oh. What an unbearable loss. I don't know you, but I am holding you and your son and your family in my thoughts and prayers tonight.
posted by waterisfinite at 5:43 PM on April 23, 2014 [2 favorites]


Oh my god. I am so so sorry for your loss. Words don't even. I am so glad mefi was here for you. Pleas take good good care.
posted by tristeza at 5:49 PM on April 23, 2014


I'm really sorry to hear that. Thank you for being very brave and please know that the love of many people is with you, including many who read this but don't know what to say.
posted by Mrs. Pterodactyl at 5:51 PM on April 23, 2014 [71 favorites]


I'm so sorry to hear that. Words fail me, but I will be thinking of you.
posted by Dip Flash at 6:00 PM on April 23, 2014


I'm so sorry for your loss. Thank you for sharing your sweet boy with the community. You will be in my thoughts.
posted by apricot at 6:05 PM on April 23, 2014


I remember your first post, and I had wondered how you were. I'm so very sorry for your loss. I'm glad this community was there to help when you needed help, and they will still be here over the coming sad hard days, weeks, and months.
posted by hydropsyche at 6:11 PM on April 23, 2014


CrazyLemonade, I am so, so sorry. You will be in my thoughts.
posted by hurdy gurdy girl at 6:21 PM on April 23, 2014


Our thoughts are with you.
posted by ftm at 6:25 PM on April 23, 2014


I am so sorry, CrazyLemonade. Please take good care of yourself—I'm sending thoughts to you and your family.
posted by mynameisluka at 6:35 PM on April 23, 2014


I'm so sorry. I'm glad MeFi could help, and you are in my thoughts.
posted by rmd1023 at 6:37 PM on April 23, 2014


Will keep you and your baby in my thoughts tonight.
posted by samthemander at 6:59 PM on April 23, 2014


I join the chorus of condolences. I am so very sorry for your loss, and you are in my thoughts.
((((crazylemonade))))
posted by msali at 7:03 PM on April 23, 2014


I am so very sorry. I cannot even begin to imagine what you are going through.

I find it pretty wonderful how askmefi can feel like such comfort when you need it.
posted by Vaike at 7:05 PM on April 23, 2014


Oh no, I'm so deeply sorry for your loss, CrazyLemonade. I will be keeping you and your whole family in my heart. I'm glad that Metafilter's been a means of connection during this incredibly hard time for you -- and know that we'll be here for you in the future, too.

Sending you hugs.
posted by scody at 7:10 PM on April 23, 2014 [2 favorites]


I am so, so sorry.
posted by amro at 7:13 PM on April 23, 2014


I'm so sorry. I hope people are with you and your family. A hundred days of love is not enough.
posted by viggorlijah at 7:23 PM on April 23, 2014 [2 favorites]


I am so, so sorry, CrazyLemonade. Sending you many thoughts and wishes for healing.
posted by chesty_a_arthur at 7:40 PM on April 23, 2014


I'm deeply, deeply sorry for your loss, CrazyLemonade. *hugs*
posted by zarq at 7:44 PM on April 23, 2014


Nothing seems right to say, but I want you to know that my thoughts are with you and your family. It is hard to imagine what you have gone though. I am sorry.
posted by treehorn+bunny at 7:44 PM on April 23, 2014 [1 favorite]


I am so, so sorry for your loss. I remember your questions from back when you were fixing up that window, and exchanging Mefimail with you about that.

I had never heard of congenital diaphragmatic hernias before your questions, had no idea how common they are. I am glad at least that having Ask as a resource you could turn to was a bit of comfort with all you have been going through these past few months.

I read this Meta four or five times before I could write this, just feeling so overwhelmed for you. I didn't know what to do, so I put a little towards CDH research over at the Cherubs site in memory of your little one. I know it's not much, just wanted to do something. I can't imagine how hard this must be for you.

My thoughts and best wishes are with you and your family. Sending lots of hugs your way, too! Take care of yourselves, please.
posted by misha at 7:57 PM on April 23, 2014 [6 favorites]


CrazyLemonade, I'm so sorry for your loss. I'm keeping you in my thoughts.
posted by whistle pig at 7:58 PM on April 23, 2014


Oh, I'm so sorry to hear this. I've been following your questions and thinking about you and your family. Sending warm thoughts your way.
posted by snorkmaiden at 7:58 PM on April 23, 2014


Very deeply sorry for your loss, CrazyLemonade.

.
posted by gaspode at 8:06 PM on April 23, 2014 [1 favorite]


My heart is breaking for you. Peace to you and your son.
posted by TryTheTilapia at 8:13 PM on April 23, 2014


I'm so, so sorry for your loss, CrazyLemonade. (hugs)
posted by Room 641-A at 8:15 PM on April 23, 2014


I am so very sorry for your loss, but so glad that you've added your story to the AskMe community.

I'm 24 weeks into my own first pregnancy, and there are so many uncertainties even before you find out something is wrong. Communities like this one -- of which there are few -- have been invaluable as I learn more. There's nothing like personal stories and experiences.

So I hope this community will continue to be a source of comfort and caring as you enter this new part of your life. You sound like you're doing so well. And when or if things get more difficult for you again, we'll be here for you as well.

But mostly I want to thank you for contributing your own experiences. The stories you've shared about your baby's life will almost certainly help someone else down the road.

Big, big hugs for you and your family.
posted by Madamina at 8:16 PM on April 23, 2014


I'm so sorry for your loss, CrazyLemonade. My heart goes out to you.
posted by mothershock at 8:18 PM on April 23, 2014


I'm so sorry for your terrible loss. Thank you for sharing the news and letting us support you as best we can.
posted by jasper411 at 8:28 PM on April 23, 2014


I'm so, so sorry, CrazyLemonade. You and your family will be in my thoughts.
posted by julthumbscrew at 8:48 PM on April 23, 2014


I'm so sorry for your loss. You are in my thoughts.
posted by ambrosia at 8:59 PM on April 23, 2014


Oh, love. Deepest condolences for your loss. Please take gentle good care of yourself.
posted by MissySedai at 9:09 PM on April 23, 2014 [1 favorite]


You and your family are definitely in my prayers. The test of a community is really not in how well it can handle the good days--it's how many people are there who are still willing to reach out when things are black. Constantly impressed with that, here.
posted by Sequence at 9:15 PM on April 23, 2014 [1 favorite]


I am so sorry for your loss. I will light a candle for you and your little one. I'm glad that MeFi could help even when things were totally shitty.
posted by KathrynT at 9:17 PM on April 23, 2014


Very, very sad. I am so sorry for your loss.
posted by cairnoflore at 9:32 PM on April 23, 2014


Oh, CrazyLemonade. Nobody should have to go through that pain. Sending love across the oceans to your family, and your beautiful baby.
posted by Salamander at 9:32 PM on April 23, 2014


Oh, I'm so sorry. I'm glad you've help and comfort here, and I hope you continue to do so. My deepest condolences to you and your family.
posted by rtha at 10:01 PM on April 23, 2014


So very sorry for your loss. You and your family will be in my thoughts tonight. Know that there's a whole community here for you to lean on.
posted by arcticseal at 10:07 PM on April 23, 2014 [1 favorite]


Thinking of you.
posted by judith at 10:08 PM on April 23, 2014


I am so sorry.
posted by spinifex23 at 11:50 PM on April 23, 2014


*hug*
posted by EndsOfInvention at 12:29 AM on April 24, 2014


I'm deeply sorry to hear what you've been through. I'll be keeping you and your family in my thoughts. Take care of yourself and please continue to reach out when you need support, we'll be here.
posted by billiebee at 1:11 AM on April 24, 2014


That is so, so horrible. My heartfelt condolences.
posted by Too-Ticky at 3:31 AM on April 24, 2014


So sorry to read this. Thinking of you and your family.
posted by rpfields at 4:23 AM on April 24, 2014


I am so sorry for your loss, CrazyLemonade
posted by angrycat at 4:32 AM on April 24, 2014


So sorry for your loss, dear. We are all thinking of you.
posted by ThePinkSuperhero at 5:08 AM on April 24, 2014


I'm so terribly sorry for the loss of your baby. I have no adequate words, but I send you and your family support and hugs from Australia.
posted by taff at 5:12 AM on April 24, 2014


Thinking of you and your family. I just cannot imagine, and gasped out loud here at work when I hit that point in your post. I am so very sorry.
posted by aclevername at 5:15 AM on April 24, 2014


I am so sorry. (((((((CrazyLemonade))))))
posted by leslies at 6:27 AM on April 24, 2014


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posted by ook at 6:27 AM on April 24, 2014


((CrazyLemonade)) so sorry for your loss.
posted by needlegrrl at 6:48 AM on April 24, 2014


I'm so sorry.
posted by plinth at 6:51 AM on April 24, 2014


I don't have the right words to offer beyond keeping you and your husband in my thoughts, so I'll just copy misha and make a small donation to CDH research.
posted by easily confused at 7:10 AM on April 24, 2014 [1 favorite]


:(
posted by oceanjesse at 7:12 AM on April 24, 2014


All my love to you, CrazyLemonade.
posted by the quidnunc kid at 7:22 AM on April 24, 2014


Our thoughts are with you.
posted by travelwithcats at 7:26 AM on April 24, 2014


I'm so very sorry. I can't imagine what you're going through. You are in my prayers.
posted by magstheaxe at 7:59 AM on April 24, 2014


Oh CrazyLemonade I am so, so sorry. I was thinking of your family just yesterday, hoping you were ok.

I love your story about the doctor. I am so glad you and your little one got such good, personalised care, and my heart breaks that it wasn't enough.

Big hugs and all the good vibes I have sent your way, sweetie.
posted by goo at 8:06 AM on April 24, 2014


My heart goes out to you, CrazyLemonade. I am hugging you and your precious baby in my thoughts.
posted by drlith at 8:32 AM on April 24, 2014


My heart goes out to you, CrazyLemonade.

Such a journey of ups and downs for you, your little spark, and all who love both of you. I hope that you are surrounded by love and support.

May the next stretch of your path provide healing and positivity in massive amounts.
posted by batmonkey at 8:33 AM on April 24, 2014


This is terrible news, and I am deeply sorry for what you have gone through. I am gratified to hear our community was able to offer some support during this awful time.
posted by ricochet biscuit at 9:06 AM on April 24, 2014


I am so sad to read this. A million blessings to your son's brief light which will endure in your memories, and a million hugs to you and yours.
posted by biggreenplant at 9:23 AM on April 24, 2014


I'm so sorry for your loss. You are in my thoughts. *strength*
posted by MartinWisse at 9:49 AM on April 24, 2014


So sorry for your loss.
posted by anya32 at 10:01 AM on April 24, 2014


I am so very sorry for your loss. Your family is in my prayers.
posted by roomthreeseventeen at 10:11 AM on April 24, 2014


I'm so, so sorry. I wish there was a way to transmit the genuine sympathy in these words.
posted by theora55 at 10:15 AM on April 24, 2014


Oh I am so very sorry. I've followed your posts and prayed for your dear baby and thought of you and your family so often. You are in my thoughts and in my heart.
posted by Kangaroo at 10:26 AM on April 24, 2014


I am terribly sorry for your loss.
posted by GenjiandProust at 10:28 AM on April 24, 2014


I am so sorry. You and your family are in my thoughts.
posted by mogget at 10:55 AM on April 24, 2014


Thanks everyone for your thoughts and prayers and hugs. I guess I'm doing better than expected for someone who just lost a child. A big help was my baby himself. Even though we always knew he could die, from the very beginning I was sure he would make it. We had a lot of ups and downs and a running joke between ourselves and our two neonatologists was that we were on a VERY LONG roller-coaster. Anyway, just around the three months mark of being in the NICU, I started loosing hope and strength and patience and started crying privately in the bathroom, while pumping, at night, wherever. The prognosis for my baby was that he would live, but with a series of troubles that would seriously impair in his, and ours, quality of life. Instead of just praying for my baby's health, I started praying for things to resolve quickly, I couldn't take the hospital stay anymore. Either get us out and I'll become the best nurse and mom for a special needs baby, or take my baby to a better place and I'll deal with my pain myself.
When the news came from cardiologist that things were looking worse and worse, I took it as a sort of answer and prepared myself for letting my baby go. Even after we'd been through with the fetal surgery and being out of my home for months, all the effort and the money, I knew I had to let my baby go. We thought it was going to be quick, the doctors let us hold him and say goodbye and turned all the monitors away from us, but after a few hours things sort of went back to normal and so my baby's agony turned into three days that started with a lot of anguish and pain and fear from us, then slowly turned into acceptance and peace. I came to the conclusion that all his life my baby had people decide what to do with him, but his own death would be his own decision. In a way we went through most of the stages of grieving in those three days, and when the time came, we were ready.
I do have a lot of pain now, it hurts to look at babies and know that I only held mine for those last three days. I think about how I should have kissed him more. I think of a lot of "maybe if I'd done this or that differently", but still I am not devastated by this, I'm sort of at peace with it even if I know I'm going to have those gray thoughts inside my head for a while.
Thanks again to everyone for the hugs and good vibes, I do need them.
posted by CrazyLemonade at 11:05 AM on April 24, 2014 [61 favorites]


So sad for you. Thank you for sharing the story of your dear baby's life with us.

If you ever want online support, Glow in the Woods has heartfelt stories and discussion board for parents who have suffered this kind of loss.
posted by ottereroticist at 11:28 AM on April 24, 2014


Thank you so much for allowing yourself to be so vulnerable and open here. We are better people because of your sharing your heartbreak with us. I wish there were a way for us to share your burden of pain or to hold it for you to give you a little breathing room, but at least know that we are with you as closely as we can be in the circumstances.
posted by janey47 at 11:29 AM on April 24, 2014 [2 favorites]


{{{(((HUG)))}}}
posted by quonsar II: smock fishpants and the temple of foon at 1:16 PM on April 24, 2014


Very sorry for your loss, CrazyLemonade.
posted by corb at 1:26 PM on April 24, 2014


I am very sorry for your loss and you are in my thoughts.
posted by readery at 1:37 PM on April 24, 2014


Thanks for sharing your son's story, CrazyLemonade. You and your family are in my thoughts.
posted by EvaDestruction at 1:46 PM on April 24, 2014


I am so sorry for your loss. I, too, have been comforted by this community in rough times and I think we are all the better for sharing each other's pain. I'm so sorry that this happened to your family, and so glad that the care of your doctor and the people around you helped as much as they did.
posted by arcticwoman at 1:56 PM on April 24, 2014


CrazyLemonade, you sound like such a strong, brave mama. So much love to you and your family.
posted by PhoBWanKenobi at 2:51 PM on April 24, 2014 [1 favorite]


What a journey for you, your son, and your family. So sorry for your loss.
posted by oneirodynia at 2:55 PM on April 24, 2014 [1 favorite]


I am so sorry. Love to you and your family.
posted by fussbudget at 4:03 PM on April 24, 2014


I am so, so sorry for your loss. *hugs* and love and strength to you and your family.
posted by bibliogrrl at 4:03 PM on April 24, 2014


I am so sorry. Love to you all.
.
posted by BibiRose at 4:48 PM on April 24, 2014


Thank you for sharing and my thoughts are with you.
posted by smoke at 4:53 PM on April 24, 2014


Oh, CrazyLemonade. I am so, so sorry.
posted by sarcasticah at 4:57 PM on April 24, 2014


I'm so sorry. I wish you and your family nothing but peace.
posted by quince at 5:17 PM on April 24, 2014


My love your way. xxoo
.
posted by Stewriffic at 5:21 PM on April 24, 2014


I'm very, very sorry. You are be in my thoughts.
posted by clearlydemon at 5:26 PM on April 24, 2014


Thinking of you and your family. I'm so sorry.
posted by apartment dweller at 5:45 PM on April 24, 2014


I'm so sorry. Love to you, I hope you feel comforted and supported in every way you need it.
posted by xarnop at 5:58 PM on April 24, 2014


I am so very sorry for your loss. This has been and still is a terrible time for you; I hope that you and your family can find peace soon.
posted by double block and bleed at 7:45 PM on April 24, 2014


Hugs and thoughts from me.
posted by Trivia Newton John at 7:48 PM on April 24, 2014


So sorry to hear about this. Very few go through the rollercoaster of a premmie in the NICU, and those that do all have a different story and experience. I saw your post on your baby in the NICU and was thinking of you all.

You are brave parents indeed.
posted by Admira at 7:50 PM on April 24, 2014


Sending healing, comforting, and loving thoughts your way. I am so sorry.

.
posted by Fig at 7:51 PM on April 24, 2014


I am so very sorry for your loss. I am holding you in my heart, and I will pray for peace for you and yours.
posted by Lulu's Pink Converse at 8:12 PM on April 24, 2014


At a loss for words, but here's a hug.

Hang in there.
posted by Devils Rancher at 8:41 PM on April 24, 2014


You are so brave, so strong. I wish I could give you a long, warm hug. Thank you for letting us share in just a little bit of your pain - I find myself grounded a bit, brought back to reality, to what matters. I'm sending all the comfort and peace I can drum up your way. Take care of yourself now, please.
posted by aryma at 9:02 PM on April 24, 2014


Love and light to you and yours, Crazy Lemonade.
posted by Lynsey at 9:11 PM on April 24, 2014



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posted by susiswimmer at 12:17 AM on April 25, 2014


I am so sorry for your loss. We will hold you all close in our thoughts and prayers.
posted by jquinby at 4:11 AM on April 25, 2014


MetaFilter is a good and fine place. Hugs to you CrazyLemonade.
posted by Sophie1 at 7:10 AM on April 25, 2014


Oh Sweetie, I'm so sorry for you and your family. It sounds like you had the best care and doctors and that in his short time with you, your son had the best life he could have under the circumstances.

You're in my prayers, and it sounds like you're finding peace and purpose, which is about the best you can do in such circumstances.

Take care of yourself and your partner.
posted by Ruthless Bunny at 7:27 AM on April 25, 2014


I'm so sorry to hear this. My thoughts are with you.
posted by carter at 7:43 AM on April 25, 2014


I am so very sorry for your loss and am thinking of you and your family.
posted by Kpele at 8:03 AM on April 25, 2014


I'm so sorry to hear this, and glad to hear that you are doing ok. Lots of hugs.
posted by divabat at 8:42 AM on April 25, 2014


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posted by vignettist at 12:40 PM on April 25, 2014


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posted by BlahLaLa at 1:07 PM on April 25, 2014


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posted by luckynerd at 2:01 PM on April 25, 2014


All my thoughts and comfort to you.
posted by casarkos at 2:35 PM on April 25, 2014


I'm so sorry for your loss.
posted by SarahElizaP at 3:35 PM on April 25, 2014


Sending love to you and your family.
posted by percolatrix at 9:55 PM on April 25, 2014


I'm so sorry, CrazyLemonade. Please take care and know one more person has you and your family in her thoughts
posted by whitewall at 5:52 AM on April 26, 2014


I am so very very sorry for your loss.
Sending you all the hugs in the world.
posted by St. Alia of the Bunnies at 8:40 AM on April 26, 2014


I am so very sorry. Sending you hugs and prayers.
posted by silverstatue at 12:15 PM on April 26, 2014


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posted by gudrun at 8:15 AM on April 27, 2014


Hi. I don't post too often -- and almost never on the grey. I'm so very sorry for the loss of your son. I'm a high risk ante partum nurse; you could've very easily been one of my patients. I just want to say how moved I was by what you wrote. The grace and strength you've described deserves to be recognized more than I think you realize.

I've sometimes seen my patients, having cared for them sometimes for weeks, working so hard to keep them pregnant, walking outside the halls of the NICU going through very similar situations as yours struggling to make the same decision you did. My biggest hugs to you.

You may not be willing to do it now, but perhaps you may want to consider offering your insight on a kind of "as needed" basis for parents that may find themselves in similar situations down the road. See if your NICU's social worker might have a group or keep a list of parents that are willing to talk to parents looking for a sounding board.

I wish you best.
posted by dancinglamb at 11:11 AM on April 27, 2014 [6 favorites]


I am so sorry. I, too, remember your first post and was pulling hard for your little one to make it through. All of my pulling and more is now for you to heal and push through it all.

Wishing you peace and strength during this awful time.
posted by kimberussell at 11:25 AM on April 27, 2014


We're thinking about you & yours in our little IRL corner, CrazyLemonade. Much love.
posted by mintcake! at 3:11 PM on April 27, 2014


I'm so very sorry for you and your family. Your baby chose an amazing mother and we are giving you all our strength and love now. Big hugs from Australia.
posted by Jubey at 9:14 PM on April 27, 2014


Thanks everyone, I'm still reading the new comments, I appreciate your support.
posted by CrazyLemonade at 9:36 AM on April 28, 2014 [5 favorites]


I'm so, so sorry to hear this. It's wonderful you got those last few days to hold him. Having been through a long hospital stay with a family member I know it's just exhausting, and can't even imagine how much more exhausting your marathon has been. Sending you good thoughts, and some quiet time to just sleep and rebuild your physical reserves along with the higher-level stuff you're working through.
posted by LobsterMitten (staff) at 12:39 PM on April 28, 2014


CrazyLemonade, please accept my condolences and well-wishes for healing. And dancinglamb: thank you for what you do. I had a roommate once who was a nurse in a NICU; I was in awe of what she and her coworkers go through with the families and their babies.
posted by thelonius at 6:26 AM on April 29, 2014 [1 favorite]


So sorry to hear this, CrazyLemonade. Sounds like you were a wonderful, loving mother to him.
posted by heyho at 6:10 PM on April 30, 2014


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