View Full Version : To my friends/scoli bros and sisses

04-22-2016, 10:57 AM
I think I have come to a point where I will at least take a long break if not just plain leave. I didn't want anyone (would there be?) wondering what happened to me. I am griefstricken with the losses within a week of each other of my father-in-law of almost 44 years quickly followed by the devastating death of my daughter's 35th week of pregnancy baby girl. Two funerals. Two burials. (And to watch your granddaugher's casket being covered with dirt is beyond words.) Too overwhelming. A baby's funeral, when you have held the little baby in your arms and rocked her, with no breath, is a cruel, heart-breaking, and difficult thing to deal with. Watching your own daughter in a deep, dark area is dreadful. Our lives will never be the same. We have had 8 grandchildren, but five are in heaven. This burden is too much. My heart is broken for my daughters and sons-in-law in so many ways, and for my husband and myself. My scoliosis and my CMT are nothing compared to what I am going through now. Thank you all for the past seven/eight years of fellowship and insight. May you all do well adjusting to life with scoliosis. Love, Susie

BTW- this last issue of JAMA had articles concerning pain that may be of interest to some of you. (One last little tidbit-- mostly because I had ended with "adjusting to life with scoliosis"...)

04-22-2016, 05:28 PM

I don't know what to say except that I will pray for you and your family

I am so sorry for your losses


04-22-2016, 05:32 PM
Take care of yourself, Susie*Bee. These losses are huge.

I will hope you come back here some day when the time is right.

Best regards and love,


04-22-2016, 05:40 PM
My heart goes out to your family. It is a real difficult time for you. You remain our friend and take care of yourself. Come back when the time is right for you

04-22-2016, 10:46 PM
omg Susie im really sorry for your and your familys loss

04-23-2016, 01:21 AM

You have been one of my biggest supports on here and I hope you stay long enough to read these heart-felt thoughts from everyone else. My niece, who I am very close to, lost her baby boy at 35 weeks, too, due to medical neglect. I was on vacation when it happened so I couldn't get to her. He was beautiful as I'm sure your granddaughter was, too. Death is not fair and unfortunately it stings us all. It seems especially unfair when it is children and young people. My hubby lost his twin sister and his dad within two weeks of each other when he was only 11 years old. He's the one who found her. It affects him to this day. I've also lost six of my nine babies. There is a void that always remains. But we have to keep on living and you can be of great support to your family and them to you. Your daughter especially needs you right now. Take your time to grieve with them and them with you.

I'm only sharing this to let you know I understand first-hand.

You are well loved here and will be missed. I hope that you will come back when your heart has healed enough that you feel you can breathe again.
My heart goes out to you. I wish I could hug you and let you cry on my shoulder. Just know that's what I'm thinking, okay?


P.S. If you read this, please send me a PM so I know you've seen it. I will give you my e-mail if you want to stay in touch. If not, that's okay, too.

04-23-2016, 10:43 AM
I am so sorry Suzie, I donít what to say other than that its ok to be lost for awhile, this seems to happen.....and its hard to say the right things, but we are always here to listen.

Do try to take care, and post once in a while.

Your friend


04-24-2016, 12:57 AM
SuzieBee- you have always been so kind and understanding, I am shocked and so sad to hear of your recent losses, especially the loss of your grandbaby. muy prayers will go with you, and for your daughter to help her endure this horrible loss. God bless you and your family. Jamie

04-24-2016, 10:44 AM
Susie, so sad to hear of your loss. My thoughts are with you and your family.
Please take care and hope to hear from you when you are ready to come back.

04-27-2016, 07:04 AM
Thank you, dear friends, for your heartfelt messages. They are a balm of sorts to an aching soul. I appreciate your friendship and your caring so much. This has always been my favorite spot online to rest and relate, because I have always considered you as my scoli "family." Someday I will try to join in again. Thanks for the support and encouragement. Yes, Ed, "lost" is a good way to describe where I'm "at" right now. Love, Susie

04-27-2016, 09:01 AM
I know because I am also lost from grief.....and keep everyone at arms length these days. (I donít know if this is right or wrong, maybe just the result of having my soul being chipped away) I feel like Paul Edgecomb from the Green Mile, but then all these younger people approach with eagerness and enthusiasm that offers rejuvenation.....Even the simple questions (like, left or right) need thought, its like this prying message from above that says keep going.....All my elder mentors are dying, all the ones that rode the same train. I guess its my turn to be the engineer in life now and drive the train regardless of the pain.....and try not to be overly serious since the young ones donít understand. Our physical afflictions are secondary now, they donít matter much if our hearts are broken. I am hoping our hearts heal at some point....I think they will.

Hang in there Suzie


04-28-2016, 04:30 PM
Ed. Very nice words. You must be a writer (or should be).

05-02-2016, 03:38 AM
Susie, I am overwhelmed with sadness and want to give you a big hug. I cannot imagine what you are going through, but I do know that you will get through this. Your daughter needs your love and reassurance.

You have been such a mentor and support to me when I needed it. I wish that I could help you now. Please know that you are in my thoughts and prayers. There is a booklet, "When Saying Hello Means Saying Goodbye" which was helpful to many of my patients who experienced a newborn loss. Send me a PM if you are interested with your address and I will track down a copy and send it to you. It was written by one of my patients.

Hugs, Susan

loves to skate
06-22-2016, 01:15 AM
Dear Susie Bee,
I haven't been on the forum for months and for some reason I was compelled to sign in. Yours was the first post I saw. Words cannot express the sadness I feel for you and your daughters, son's in law, husband and grandchildren. Having had three miscarriages, then the birth of my daughter only to lose her after a six year illness at the age of ten, I know only too well how you feel. To lose a child is the saddest thing anyone can go through. May your faith in God comfort you and bring you back from that dark place over time. Hugs and prayers to you and your family.
Love, Sally