this is a wierd topic...but i feel it's an important one. and this is not just about me or my husband, but any grieving family...because once upon a time, i was on your side of the fence not knowing what to do or what to say...but now i feel i can help you all understand a bit from my new side of the fence...
(once again..not about me...about every grieving family)
please don't ignore us.
don't not talk to us simply cus you don't know what to say.
saying nothing adds to our pain.
because ignoring us makes us feel isolated and neglected and unloved.
it really hurts.
the dumbest question to ask is "how are you doing?" or "how are you feeling?" because the answer is obvious...and it kinda seems like you just want to hear "ok" you don't really genuinely want to know about us...
instead a better question is "how is today"
don't say "let me know how i can help" or "can i help" just find something no matter how small and do it. because if others are anything like me...asking for help is a very hard, learned process and i'll always say "i'm fine" even though like today i'm drowning...
the best way to describe it is that we're not really sure how people best like to help, so when someone says can i help you...you're unsure if they mean cook a meal, mow the lawn, watch the other kids etc...so just offer what you'd like to help...because we want the help but are not sure what you want to do to help....
men are mr. fix it's by nature...and when they can't fix something like a child dyeing they walk away. and thats a huge slap to the face. we don't expect you to fix it. because lord knows we've already tried to. we just need the bond to remain open.
it's perfectly ok to not talk about the situation sometimes...infact a welcomed distraction is great, laughter goes a long way...but don't, not talk about it at all like it's the elephant in the room.
if you don't know what to say simply say that...because honestly...we dont know what to say either. this is all new to us as well...
but by not saying anything, we interprit that as not caring.
and that adds to our pain.
losing a child or husband or whatever the circumstance is painful enough, but add to it losing what you thought was a close friend, thats just fuel to the fire.
one of my dear friends has been reading books about grieving to help us thru what we're facing and i thought that was a great idea! i wished i had thought of that before...so if you are genuine then maybe find a good book targeted at grief and loss and read up...it'll explain best just how we as grievers are feeling and give you good ideas of topics to talk to us about.
so anyway...the only reason i'm writing this is because i wished i had this information before in my past relationships that suffered loss...not because anyone is making me upset or anything..
love
sarah
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There were less than 10,000 deceased organ donors in the US last year. (that's a ratio of 1 organ donor to every 10 transplant patients).
In the time it takes you to shower today, 1 new name is added to the US transplant waiting list.
From the time you woke up this morning to the time you wake up tomorrow morning, 18 people will die waiting for their transplant in the US.
click here to join the organ donation registry
BECOME AN ORGAN DONOR, SAVE A LIFE!
This is Jami Deters, my screen name won't tell you that, lol! But I just want to say I totally agree with all you've written. When we lost our daughter, she was 10 days old, we learned people say and do the dumbest, most hurtful things. But what was almost worse, was when people didn't say anything. It's so hard. (((hugs))) you and your family are in my prayers.
ReplyDeletetruer words were never written. I understand this because I lost my brother our family had to go through the slow painful process of watching him die, under much different but equally as devastating circumstances. I had no idea how people would react and it is very strange they don't mean to hurt you by their behavior but it happens. I too wish I knew then what I know now about loss and how to treat a grieving person. Sad we have to learn these lessons the way we do but that is where faith steps in I guess. Sara I just want to say my mom wasn't sure she was going to live through it and it scared me to death but she has she learned you don't get over it you learn to live with it. She has a happy life enjoying family and her grand kids. She knows in her heart she will see my brother again. I continue to pray for a miracle for Connor and I think you are living a miracle right now.
ReplyDeleteI never thought of it that way so I appreciate hearing that message. I, like many, have a hard time accepting help, and so I guess it would make sense to ask a more specific question, like do you need dinners, or childcare instead of how can I help.
ReplyDeleteThanks! BTW, happy late anniversary! The pics on facebook are adorable :)
Very good advice Sarah. I'm following another blog where they have a little girl in the final stages too, of cancer, and I've been tempted to ask you if you wanted to connect with them as it seems like you're both going through basically the same thing. Having someone who knows what you're going through could be a huge help I would think, for both of you. But I don't want to intrude. Feel free to email me if you want their blog address. If you don't, that's absolutely fine too. Big hugs.
ReplyDeleteKip
Sarah,
ReplyDeleteYou don't know me, but I am sending love, hugs and prayers across the internet to you, Connor and the rest of your family. I am in maryland so I am not geographically close, but I send you my prayers...
Jacky
Sarah.....Kory and I are so grateful you wrote this. Our good friends recently lost their baby boy.....And all of us are in the situation of "what do we say?" I know I have done several of the "don't s" This was seriously some of the BEST advice I have ever received in my life. Thank you for taking the time to write it.
ReplyDeleteI think about your family on a daily basis. Connor has made an impression on our hears. We donate a lot of $$ to our church and it leaves very little $$ to other charities ....However, Connor has emptied our bank account a few times. We're determined to help find a cure for CF. I HATE CF!!!! Next year we will run for Connor....I would have this year if I was not 2 weeks postpartum. Thank you for helping us be involved in something bigger than us. We found our passion.
Thank you for sharing this. I have felt like this when we were grieving our babies that died in the womb. I felt so hurt that people avoided me.
ReplyDeleteI pray that those close to you are really helping you and standing with you.
kip...couldn't find your email address i'd love to connect with them, you can share with them my link and i'd love theres as well...thanks!
ReplyDeleteHi Sarah ~ I am Reba's Aunt and I have been praying for your whole family for about a week or so after she sent me the link to this blog.
ReplyDeleteI was in sort of the same position four years ago this July when my dear husband passed away. One morning when I was leaving work I mentioned to the AM shift lead something like "I am taking my depressed self home." He responded back with something "you're not depressed, you're smiling." He couldn't look inside of me to see the tears.
I was not able to be with my husband (end stage cancer which was detected way too late to help) when he passed due to circumstances I won't go into here.
Next year I will be living in Kansas City, MO and will be walking with Reba, Kylea, and family and for Conner.
~ Linnea
Hi Sarah. I myself am a CF Mom and am your same age. My son is 4. I read your blog often because your family is always on my mind and in my prayers. I just wanted you to know that you are an amazing Mommy and your son has a very special footprint for this whole world to see. We have lost friends simply because Caleb has CF and it is so frustrating that people can turn their heads when they are "afraid" of your situation. But my main purpose in commenting on your blog is for you to know that there are many people praying for you and your family to have the strength to get through each day.
ReplyDeleteMelissa
that could not have been said any better.
ReplyDeleteThank you for your transparent honesty. You and your family are often in my thoughts and prayers.
ReplyDeleteHi Sarah,
ReplyDeleteHere is their site-
http://www.caringbridge.org/visit/mattiepowell/journal
Hugs,
Kip
That said a lot. A lot more then I think you think it did. I'm blessed to know you & your family Sarah <3 I'm very glad to have your address as well, because now I have ideas of what to send you & your family!
ReplyDeleteSo much love & prayers coming your way!
Chelsea
I so related to your post!!! Amen sista! I live in Pasco Wa, and when our son Nathan was born 6 weeks early in Richland and had to be airlifted to Spokane at 11 hrs old for a colostomy to be done due to mecunium ilius. I spent the next 2 months with him 140 miles from home while he was in NICU. When i came home with him, NOBODY called, NOBODY stopped by, it was as if he had a disease!!! It was the lonelest,most devistating time of my life. Now, 9 years later people will say "we didnt want to bother you" ETC. CF has broke my heart so many times these past 9 years. My son is doing well with his CF and for that i thank god and am so grateful. We raise about a average of $20,000 a yr for the CFF and will never give up on fighting for a cure. it is my misson in life!I think of you daily,and say my prayers for Conner. I dont know you,but i love you. Conner and your family have added fuel to my fire to fundraise harder, to be a better mother, to be a better wife. I think you have a beutiful way of writting and would incourage you to write a book about Conner and his and your battle as a family about CF there are too few books out there about CF. Our Barnes and Noble doesnt have 1 book on its shelf. pisses me off! so i find books on Amazon.com about CF. anyway im rambling now LOL! I just wanted you to know im in your corner. Team Nathan carried red ballons at the Richland walk and in 2 weeks we will do the Spokane walk and we will carry them again. Love to you,im sorry this is happening, it really pisses me off !!! Take care !! Amy Finke
ReplyDeleteMy family is keeping yours in our prayers. Since I don't really know you that's the best I can offer to do.
ReplyDeleteI think you have it the hardest- you get time to say goodbye. When my sister died it was an accident. When my mom died, it was sudden and unexpected.
I just wanted to share one thought with you in hopes that it helps in some small way. Families are Eternal. You may lose Conner in this Earthly-life, but when all is said and done and it's time for the Resurrection and Eternities you will get to raise him. Families are truly meant to be forever. And our Heavenly Father has made it 100% certain. So although you are and will be hurting for the rest of your life, know that the now is just a second off all eternity,and he will be yours forever. You will hear him say "I love you Mom" again and then forever.
Well.... I confess. I have been silent because "I don't know what to say."
ReplyDeleteI think of Conner and your family daily though, and send out wishes and prayers and have started doing what I can here to help raise CF awareness, something that I had no idea about until I met another CF momma.
virtual *hugs* to all
Thank you! I have learned so much being part of the CF community, learned so much since diagnosis. I'm thankful to hear your words on this, because you are sooo right. I will keep these words with me always and I know I will be a better friend and family member because of it. ((((HUGS))))
ReplyDeleteThank you for that. People want to know what to do and try, but unless you've been through it, it's hard to know what to say and do. I posted this on my fb because I think this is valuable information. Thanks for taking the time to put it in writing.
ReplyDeleteI'm guilty of this as well..recently a family that I know lost there daughter to a tragic incident. She was 19 mths old and was injured while at her babysister's house and ended up passing from the incident. I am so glad you posted this as I really don't know what to say to this family. I am SO saddened by their loss but I didn't want to bring it up for fear of hurting them further. I have been thinking and praying for your family and I will continue to pray for you guys. I hope that Connor isn't in any pain as his time draws near
ReplyDeleteI can only hope tomorrow is better!
ReplyDeleteSarah, thank you for posting this. Many people totally relate to this and just don't know what to say. My brother died, committed suicide when he was 16 years old, which was 14 years ago now. It was devastating to me and our family. So many didn't know what to say or do and many didn't say anything which did hurt. Some people still are that way about it even 14 years later. Even though we still have the pain and hurt, and think about him every day. It's like he never existed, which we totally don't want. We love you guys soooooo much!! I can't imagine what you and Brad are going through with emotions. Knowing there isn't anything left to fix Conner. to plan his funeral and to spend every moment as if it was his last. He knows you guys love him so much. You are THE best parents, and I mean that from the bottom of my heart. Mason talked about Conner alot this past weekend. Please tell him that. By the way, we mailed you guys a check back in January and I saw it's not cashed yet. If you have it yet, please use it for a fun day of playing with the kids. If not, I will send it again. I want you and your family not to have to think about money. I want you and your family to only think about FAMILY!!!! You teach me so much about what it really means to be a Mother. to give your kids everything you can and more. To LOVE! You are my inspiration Sarah. HUGS!!
ReplyDelete