R.Everit55 Posted July 6, 2015 Report Share Posted July 6, 2015 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. Link to comment Share on other sites More sharing options...
MartyT Posted July 6, 2015 Report Share Posted July 6, 2015 You are in our thoughts as we hold you in our hearts, dear Butch ♥ Link to comment Share on other sites More sharing options...
LadyCarrie Posted July 6, 2015 Report Share Posted July 6, 2015 We all still care very much that you hurt, and we still pray for you. Warm hugs, Carrie Link to comment Share on other sites More sharing options...
kayc Posted July 6, 2015 Report Share Posted July 6, 2015 Butch, It does seem hard to believe it's been six months, it can both seem yesterday and forever at the same time. I'm thinking of you as you hit that six month mark. I know it's hard, still praying for you, very much. Link to comment Share on other sites More sharing options...
enna Posted July 6, 2015 Report Share Posted July 6, 2015 Good morning, Butch. I'm thinking of you as you remember your beloved Mary. Time is only a word in our lives as we all reflect on our losses. I pray for you as you work toward good health. Give Little Man a scratch on the head for me. Anne Link to comment Share on other sites More sharing options...
feralfae Posted July 6, 2015 Report Share Posted July 6, 2015 Dear Butch,Time seems to move at its own pace when we are grieving. Some days fly by, and some hours drag on forever. I know Mary will with you every one of those times, filling your heart with her love. I am thinking of you and sending prayers and wishes for your healing and for getting stronger. Yes, give Little Man a head rub from me.And here are some *<twinkles>* to help brighten your day. Peace to your dear heart, Butch.I hold you in my heart.Blessings,fae Link to comment Share on other sites More sharing options...
R.Everit55 Posted July 7, 2015 Author Report Share Posted July 7, 2015 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 Link to comment Share on other sites More sharing options...
kayc Posted August 3, 2015 Report Share Posted August 3, 2015 Update: I received the following email from Butch: All the prayers in the world are needed now. Katie's contractions became full blown and her water broke and both babies hearts were in too long of deceleration so they took Katie to an emergency C-section. Lilian Mary and Lila Beth were born at 4:56pm and 4:59pm. I am on the way there now. All I know is they are both intubated. And Lilian is 2lbs while Lila is 2lbs 1oz. These are miracle babies... Those weights are on the very high end of the scale for 24wks 3days Katie is okay. She hasn't seen the girls. Allen is in the NICU with them. I will update when I can. I won't be there long. I am just coming to see the kids for support. I won't be able to see the girls. I asked Allen to take a pic of each of them. Please pass this on to Anne and the group. Thanks. Having problems with loading pictures, it doubled one of them but doesn't show it when I try to fix it. Link to comment Share on other sites More sharing options...
KarenK Posted August 4, 2015 Report Share Posted August 4, 2015 How very tiny and precious they are. Praying for them and for Butch and the babies parents. These little ones need to survive and be healthy. Karen Link to comment Share on other sites More sharing options...
MartyT Posted August 4, 2015 Report Share Posted August 4, 2015 Praying, praying, praying ♥ Link to comment Share on other sites More sharing options...
R.Everit55 Posted August 4, 2015 Author Report Share Posted August 4, 2015 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 Link to comment Share on other sites More sharing options...
kayc Posted August 4, 2015 Report Share Posted August 4, 2015 Butch, couldn't help but share this...the mental image of the grinch's heart growing bigger and bigger and bigger came to my mind as you tell of seeing your new little granddaughters. (after downloading, skip to 26 seconds...it's short) Link to comment Share on other sites More sharing options...
kayc Posted August 10, 2015 Report Share Posted August 10, 2015 It is with great sadness that Butch reported little Lila Beth passed away in her parents' arms today. Grandma Mary now has a new little one to look after in heaven. Lily is progressing, but continues to need our prayers.You have my prayers, Butch! Link to comment Share on other sites More sharing options...
enna Posted August 10, 2015 Report Share Posted August 10, 2015 This is so sad. I cry with the family and pray that all have strength during this trying time. I am so sorry, Butch. Thank you, Kay, for letting us know. Anne Link to comment Share on other sites More sharing options...
MartyT Posted August 10, 2015 Report Share Posted August 10, 2015 Tears, prayers, love and light to you and your family, Butch. I am so very sorry to learn this sad, sad news. So very sorry . . . Link to comment Share on other sites More sharing options...
feralfae Posted August 10, 2015 Report Share Posted August 10, 2015 Dear Butch,I am sorry sorry Butch. We know that Mary is loving and holding Lila Beth and that they are together. {{{hugs}}} to you and your dear family. I am holding you in my heart and sending love and peace, healing and prayers to you and all there. I am just so very sorry. My tears join yours at this time of sorrow and loss. Link to comment Share on other sites More sharing options...
R.Everit55 Posted August 10, 2015 Author Report Share Posted August 10, 2015 Thank you ALL thank you dear Kay for sharing about LilaLila 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. Link to comment Share on other sites More sharing options...
KATPILOT Posted August 10, 2015 Report Share Posted August 10, 2015 We certainly will Butch. My thoughts are with you and your family. My triplet granddaughters were born less than two pounds each. They were fighters too, just as Lilian is. Link to comment Share on other sites More sharing options...
kayc Posted August 12, 2015 Report Share Posted August 12, 2015 Praise the Lord that she is gaining weight! However slight, it's very encouraging. I have everyone I know praying. She is so beautiful, so dainty looking, it's amazing. I've had a lot of people tell me their stories of preemies surviving at this weight. I understand 24 weeks is kind of a benchmark point, so am trusting she will make it. Your heart must be in overdrive. Link to comment Share on other sites More sharing options...
MartyT Posted August 12, 2015 Report Share Posted August 12, 2015 Link to comment Share on other sites More sharing options...
R.Everit55 Posted August 12, 2015 Author Report Share Posted August 12, 2015 Lily tonight. She's on a nasal cannula and off the vent. She's keeping her stats up! She tried the paci and loved it. She's so small, only a little bit of the paci gets in her mouth but it's enough to suck on. She's a fighter. But with micro preemies it's an up and down any minute game. Link to comment Share on other sites More sharing options...
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