R.Everit55

Thank you all. While hearts are broken for many things, hope remains in the fight of little Lily. She had bowel surgery this morning. But she is cautiously stable. She's such a fighter. I know twins have a bond. And she would be thriving better with her sister beside her. But Lila was meant to be in Heaven with her Grammy. My Grampy heart is broken. But I see how Lily is fighting. If she can fight at 2lbs then I can be strong for my grandsons and my son and DIL.

I belong in Loss of spouse. I lost my wife seven months ago. But I just lost our six day old granddaughter Lila Beth Sunday. Her twin Lilian is fighting. They still belong in my DIL's belly. They were born at 24 weeks August 3rd. My wife and I lost our own twin girls 26 years ago. Stillborn. Our hearts broke. Now our own son lost one of his little girls. The other fighting. I can't protect him. I can't protect my granddaughter that remains. I can't do anything. Especially without my beloved wife. Hearts are broken. Children should never have to be taken from this world before their parents. Butch

Thank you ALL thank you dear Kay for sharing about Lila Lila had a bad infection along with surgery on both her brain and heart and suffered a stroke post operatively. She had no brain function. My son and DIL held her as the machines and wires were disconnected. Her little 1lb7oz body didn't have enough fight for it all. It's heartbreaking. I ache for Allen and Katie. But Lila Beth lived for six days and went to Heaven on the seven month date of my Mary... Her Grammy... Going to Heaven. Today Lilian is thriving and I received a photo that melted my heart. She was so alert looking at my son. She's up to 2lbs4oz and her breathing is improving to where they may try her just on a nasal cannula tomorrow. She's fussy of and on but with the breathing tube she can't try a pacifier. I can't believe how alert she is in this photo. She's a fighter. And now she has her twin watching over her in spirit. I had the job of explaining to the boys that one of their baby sisters is in Heaven with Grammy. Please keep prayers for Lily Thank you all.

Thank you Kay for posting here. Thank you all for your prayers. I'm pasting what I just emailed to Kay. my heart is so full and scared and in shock that my granddaughters are here and such little miracles. I pray that their Grammy Mary is sending strength from above for our sweet girls and for our son and DIL. My heart is full. Scared. And a bit sad because my bride isn't here. She would be immensely proud. It's almost seven months without her. But I know she's with our little Lilian and Lila... Our beautiful granddaughters. They are her granddaughters too and I know they have her strength and fight in them. Even at two pounds each. "Oh my heart Kay. I just left the hospital. I saw Lily and Lila. (Allen and Katie are calling Lilian, Lily for short) they are so tiny. So fragile. Both of them held onto to my pinky finger. So strong. I cried. Grampy's girls are beautiful. Katie will see them in the morning. She has photos though. I stayed only a few minutes with them and a little while with Allen and Katie though Katie was in and out of sleep and pain. I told the girls their Grammy Mary would love them so much. It's all bittersweet. Lily has a small hole in her heart. The Drs are not saying surgery at this point as it's possible it might close and heal on its own. If not it will get bigger and she will need surgery. Lila has IVH which is a minor hemorrhage in the brain which may resolve itself but again like Lily's heart if it doesn't surgery will be required. Both girls are on a vent though breathing about 30% themselves. They have feeding tubes with pumped Mommy milk... Though her milk hasn't come in... It's colostrum. So they are getting tiny amounts of Mommy's "liquid gold" through their feeding tubes. They are receiving medication to help boost their lungs. All in all they are considered critical but cautiously stable. Things can develop from one minute to the next with preemies this small. They each have a nurse round the clock. And any changes will require tests quickly as anything can pop up at anytime that could be minor or severe at this point. I'm not on FB. I will try to make an account maybe at some point. I've never been into all the social media. Mary was. Thank you for the prayers everywhere. I will be in charge of the boys. I still have someone coming in part of the day to help me with PT as it's taking longer than usual for the recovery of my knee replacement. The boys start school in a few weeks. I just can't believe I'm a Grampy again and have two tiny granddaughters. My heart got bigger today for sure. I just wish Mary was here." Butch

My beautiful bride. She's really gone. I somehow can't wrap my head and heart around it today... Tonight. I'm supposed to just allow this journey to happen. But it feels like it is all gone backward and I'm doing it wrong. Six months ago in two hours and fifteen minutes... She left.

Kay I agree for me at least as Mary's husband I needed to fix her. All of her ailments. But when ALS was finally figured out it was late. And it went so fast. And I knew all about it. And I knew I COULDNT fix it. I knew it was an ANGRY ANGRY disease. I just tried to love her through it. I tried so hard to believe and take one day at a time. All the while it was stealing things from her daily. I'm a mess today. I won't do PT. I asked my son to take me to the ocean. This is is where I know my bride is. It was our place. I'm crying. I am a man. I absolutely have no shame anymore in just crying. I was never a "cryer" before. I don't want tonight to be six months. I don't want it. I want one more moment with my bride. But sitting here at the ocean will have to do listening and watching the waves. If I could walk in the sand with this knee I would put rose petals in the ocean. But I will do that when I heal.

Stephen and Maryann... Thank you. Maybe it's the six month mark later tonight that is eating at my heart. I have the guilt. I have the what if's. I have the anger at all that ALS slowly stole from my bride. But I was reading my first post the day following her death and the undying love and honor between us six months ago. I will never forget those last moments of pain, calmness, prayer, devotion, love and so much more all rolled into one. I can feel her in my arms. I can see her looking up at me eyes meeting each other's and no words necessary. While it hurts my heart, I never want to forget those last moments. I'm just a mess today. My heart goes out to you and your grieving hearts as well. Butch

I remember writing this 24 hrs before my bride went to Heaven. "The time is near. The time when it was decided by my wife and myself when enough is enough. The time when everything has shut down and it's only her mind imprisoned in her failed body. I know her decisions and I must follow through with them. How do I do that? Her mind is still here. But she does not want to be kept alive with a machine 100% breathing for her. And that is where we are. Her own breathing function is not more than 5-10%. It's getting to be that time where if the ventilator was to be shut off, her own minimal breathing would not sustain life for her for more than a few minutes. She knows what's happening. And she knows her wishes. And she is trusting me to follow through. And I will. But not quite yet. There are goodbyes that need to be said. She so adamant about not letting her linger. But for me, it's like I'm killing her if the machine is removed. Because her mind is not gone. She knows . She is imprisoned. But once her breathing is totally at 0%, she won't last long. But she doesn't want to just linger like that until she passes. This is all heartbreakingly conflicting." And now I wonder, how could I take her off the vent? How could I give up on her? How could I play God and decide that six months ago Jan 9th I would remove her from the machine? Yes it's what she wanted... She didn't want to just linger there. But how was it my decision to make that night? It's like I gave up. I killed her. I gave into the ALS. Why am I feeling this. I am sorry I made that decision. I hope she didn't think I gave up on her. Even though she knew and it was her wish. Dammit... Why????? I want to rip my heart out. Comfort is not something that is with me right now. For I don't know if I did the right thing. I don't know if I comforted my sweetheart. I don't deserve comfort. She could have been kept alive. I maybe shouldn't have listened to her wishes. I should have given her and us more time. I'm sorry if this doesn't make sense.

Thank you ladies, Time seems so warped. My physical, emotional, and grief healing is lagging. Yet the time since my bride left us is going so quickly. I want to not move forward most days right now. I want to hold on to the memories... Yes even the horrendously painful ones... Because I FEAR so painfully that it all will just fade too far and never to be remembered again. Our grandsons are maturing so fast. Our twin granddaughters will be here before we know it. It's all happening without her. Little Man of course got some scratches from you all. He's been good company. The boys are wearing him out this summer. Butch

Four nights from tonight will somehow be six months since I laid beside my bride holding her as she slipped away from me. These last few days before January 9th I knew she was slipping away. She couldn't breathe on her own. She couldn't talk. She couldn't move. ALS stole everything but her mind from her. She looked in my eyes all the time. She didn't have to speak. So the fact that she couldn't didn't really matter. I mean yes it did. But I knew what was in her eyes without words. And I know she knew mine when I had no words enough to tell her how much I love her and cherish her and our life together. She could even see the anger I had in my heart for that cruel disease. How has it been six months. I want to go back to those last few days holding her tighter as Jan 9 came.

Thank you so much Our priest said this morning to me that Mary knows our Granddaughters before anyone else. She knows them now before they are brought into this earthly life in four months and a half months. Isn't that true. She is blessing them with her love I bet. I'm trying to imagine Lillian and Lila here with us and I can't yet. But two baby girls in this home will be great. The boys are excited to have sisters. ❤️❤️ I slept a lot this afternoon and evening. Im about to get up and walk with help with this walker out to have dinner with everyone. The nurse is also going to help me shower. Butch.

Hi friends. I successfully had my knee replacement. The pain meds really got to me psychologically. So it was decided they put me inpatient and monitored a few days. Everything lately Made my heartache and grief worse. Haven't known up from down really. I'm still in a deep depression but am back eating and taking meds when the in home nurse says its time. I don't like it. But I have to get through physical therapy that will be grueling. I need to be my best for my son and DIL and be the best Grampy to my boys. I just kind of fell off the safe journey but I'm trying hard now. I got news that is so heart warming. My son and DIL are having twin GIRLS! I so prayed they were girls. I'm in tears typing this. Their names have been decided already and shared with me. The backstory is my beautiful wife no longer with us was fully named MaryBeth. But she always was called Mary except by her adoptive parents who called her MaryBeth. So Twin A is named Lillian Mary and Twin B is named Lila Beth. They each will carry on their Grammy's name. My heart is feeling conflicted because she's not here with us but the babies will carry her name. It's Bittersweet. Thank you Kay and Anne for communicating with Allen why I sort of checked out. I am trying very hard to keep it together now. It's hard. I miss my sweet wife. She is missing out on so much. She should be here. She should be welcoming our granddaughters into the world in four months or so with me. And the boys miss her so much too. Twins girls. My heart strings are being pulled on. ❤️ Before long these baby girls will surely be wrapped around Grampys finger. Butch

I did tell my therapist plain and simple if I get worse I won't argue with going inpatient because I'm at the end of my rope. I won't argue. I'm a man. But I know enough to admit when I'm a very fragile weak man.

I've been refusing the meds now. I'm in agony. I'm in tears. I miss Mary. I don't know how the 9th will be six moths already. Nothing and no one is comforting to me. I feel trapped alone and like it's all just happened. Why. No one needs to answer I just need to put my heart somewhere.

I told the nurse no more pain meds. I think they are making my emotions heightened. To the point I don't want to exist. Not without my love. I would rather have this excruciating physical pain than the heightened heartbreak. She called dr. He still wants me on a smaller dose. My therapist is coming to my place to see me in a couple hours. I will try to cope.

All I can say is five and a half months and I still ave the fog and agony in my mind and heart. And no that's not the meds talking. Hugs to you. ❤️

I'm on a lot of pain meds. I have nurse here 24/7. But my princess heart soulmate most beautiful bride should be here. There are no words. I miss my love. It hurts so bad. Five months twelve days. It keeps getting worse. Butch

I'm so sorry Kay that family doesn't remember and support. But they don't now how it feels to lose your life partner as we have. I send love.

Hi everyone Thanks for the thoughts etc... I'm partially with it enough to check in. Still in loads of pain but today the Percocet is actually kicking in mor. I hate the doped up feel. Hate the nausea. I was so sick after surgery and several days vomiting violently. I remember very little of the week. Esp first 5 days. Allen said I kept asking he and staff for Mary. Why would I do that? I mean asking once and being told she's no longer with us. But repeat ly asking. That's insane. Noah is goimg to be ten on Saturday. Our first grandson. He's almost as tall as me. I'm short. My head is real spinning right now so am going to rest. Had soup and meds. The nurses are nice that they have here at home. Dreading PT next week. Thank u for thinking of me. Love to all ❤️ Butch

Thank you as always Kay I would email you myself... However you probably would get a lot of not making sense in the early days... LOL. So I will let Allen do it. I'm about to have my "last supper". Haha! As I can't eat drink past 10 they said. Having steak on the grill! Got my boys here with me.

Hi. I have not been able to sign in here for a while. Internet is better now. Hopefully solved. So tomorrow is 5 months since my bride left this earthly life, our home, and my arms. Ouch... Just typing those words rips at my heart and sends me into tears How can it be this long already? Where have 5 months gone? It's all a blur. Tomorrow is also the day I am going in for surgery to have a knee replacement. My ACL, MCL, medial and lateral meniscus have all been torn too much everything is just shredded. I will be in the hospital for 5-7 days then be going to a rehab facility for 2-4 weeks then at home will have an in home physical therapist working with me. It's a good 12 week recovery or more depending on the person. I of course want my bride here. I don't want to do this without her. I'm scared. I'm afraid of my cardiac health. Though I checked out for that. But with my cardiac issues the last few months... I'm scared. I'm not ready to leave my son and grandson and DIL and the twins she is carrying. My family. OUR family... Though Mary is not here on earth... It's OUR family. Tomorrow night at 11:15 will be 5 months. I will most likely be so out of it I won't know. But I will know going into surgery in the morning. I will have our son email Kay and Anne (if okay) when I'm out of surgery and safe and sound. Prayers would be appreciated. Maybe my love will come to me when I'm in surgery. Who knows. I miss her so... Butch

Yesterday was 2yrs since Leo died. Last night was also 20 weeks since my Mary died. My family... Parents, I'm laws, siblings... Have been very cruel. Judging Mary. She's gone! Judging my grief. Or lack thereof. My anger... Very much displaced. Spoiling my grandsons. "Coddling" them. They are my grandsons, they lost their Grammy. This is my life. MARY WAS MY LIFE. Our grandsons were our life. Our son is my life. Apparently I'm doing everything wrong. Do you ever just not want to exist anymore? Not that that's ever an option... Just that feeling. Is anger depression or is depression anger? Angry and broken. My son bless his heart decided to reveal that the twins are identical. And they are further along... 11weeks... Than they thought. So maybe a couple of Thanksgiving babies. Will know the genders in a a month or so. End of June. I'm praying for girls. But as long as everyone is healthy. It's 10:20 am now. I'm not slept Ina couple days. I'm going go try to nap. Butch. My boys... Getting bigger. Brotherly love always.

Yeah, I've done all that. With every past pic I've used. I'm fed up Thanks

Anne, tried it. Nothing is working. Marty... Help The one with the sun and ocean is the new one I want The one of the sky and angel clouds was my previous one that worked Nothing will work.

Whatever it doesn't much matter today. I'm in a really bad way. And rather than being redundant and saying the same crap... I will save everyone the trouble..