R.Everit55

I just want to convey on behalf of Mary and myself, thoughts prayers and healing energy to all who seem to be suffering with one form of health ailment or another. ❤️❤️❤️ Butch

Marty, yes I will definitely need help and reminders to tell the guilt in my heart to go jump in a lake. Tonight my love had to be put on oxygen. Her breathing is labored, painful, and O2 stats dropped. She has also started on Baclofen for her muscles because they are becoming rigid and painful with the paralysis in them. Her legs. Her arms are painful but she still has some mobility in them. The dr has given her 3 to maybe 6 mos. She has been on Rilutek which is given usually early on in diagnosis to help slow down the progression. But being the beginning of the later stages, it really won't do much. She is sleeping now, breathing more comfortably with the oxygen. I told myself after she has gone to sleep I would take myself away to the other bedroom to try to sleep myself. It's just so very hard to leave her side. I've got a remarkable hospice gal here all night. But the guilt is overwhelming. And I must be honest, I am so afraid to go off on my own that I will simply fall apart and I am not one to cry or get scared or fall apart in that manner. I will do my best to make time for me. Thank you all. Butch

Thank you so much everyone. I got out for a few hours this morning. I hospice was kind enough to arrange to be here more during the night hours now. I have horrible guilt. Mary cannot settle unless I am laying with her. And she certainly cannot fall asleep unless I'm there. However, once she is asleep, she generally stays asleep for the most part. I will go to the other room and try very hard to sleep a few hours each night. The caregivers will let me know if she wakes and I will get her back to sleep. Hospice also is setting me up with a therapist and a psychiatrist ASAP. I'm so thankful for these people. I wouldn't make it without them. And our son and DIL as well. Mary is still having fairly good awake hours. She just doesn't like when I am not there. Guilt is playing such a huge role. Thank you all. She is napping so I am going to try the same. Butch

Thank you both. Anne, yes I've got Hospice here. But Mary gets very unsettled if I am not with her all the time. The ALS is like a prison for her. Her body is failing. But her mind is fully aware. I have our son coming over in a couple hours. I am going to try to get away while he is here with her. I need to talk to hospice about help for myself. I'm overtired. I am so in tune to Mary that I get hyper vigilant about everything. I am trying so hard to make more time in the day because time is precious right now. Only that is an impossible feat. I'm going to take a shower as my sweets will be awake soon. Butch

It's 5am and I am having a full blown anxiety attack. I have never had depression, anxiety, or anything like this. My wife is suffering from ALS. Late stages. Was misdiagnosed. But she is holding her own. So why I'm here at 5am with anxiety I've never suffered before is frankly freak ing me out. Any suggestions would be appreciated. I cannot be like this i have to be strong for Mary and our family. I cannot let her down. I cannot show weakness, or she will panic. I'm her husband. It's my job to be strong and hold everything together. Thanks for listening, Butch.

Thanks Kay and Marty. Kay, I made vows to this beautiful lady, so being devoted is such a simple feat. Just as you to your husband. And really absolutely anyone on this forum whether man or wife, siblings, parent, child... Where there is love, devotion is simple. Goodnight. Marty, thank you for the beautiful image. I will show it to Mary in the morning. :-)

I apologize for being away for so long. Things have gotten so crazy here. Mary spent nearly two weeks at Yale again because the medication for her MS diagnosis was doing nothing to help and in fact she was declining. She became weaker and could not eat solids. Only thickened liquids. So her neurological team at Yale did another battery of tests and unfortunately the diagnosis of MS was a misdiagnosis and she was diagnosed with ALS Lou Gehrig's disease a month ago. They give her three years. But they very openly and honestly don't expect that long. I've taken her out of the nursing facility and have her home. With much help from a nurse part time. She is "happy" and "well" today. But that is today. Tomorrows are uncertain. But I do not look at the tomorrows. I only look at today. I refuse to have her not home. I'm exhausted. But I'm "content" because I am devoted to her. I am still in physical therapy for my knee. It's grueling. But I'm doing well. Mary is blossoming being at home despite the weakness. Her diet consists of only thickened liquids. This diagnosis explains her quick decline this past year. From little things to big changes. She also has Parkinson's but the medication for that has helped. So things are difficult. But things are good because that is the only outlook and attitude I choose to have and to convey to her. If she has three years, then I will do everything in my power to make those years the very best for her and for our family. She loves the company of our grandsons. She loves the companionship of her little dog who never leaves her side. And she smiles more than not. That means I am doing SOMETHING right. And that is all that matters. I tried posting this earlier and it all vanished as I was about to post it. So frustrating when time is something very valuable. I got Mary to bed and typed this elsewhere and will copy and paste it so it won't vanish again. Mary cannot type. But I hope for those of you who have touched her life and heart that it is a comfort that she DOES indeed remember and acknowledge this forum and all who have been there for her. I will try to do better on updating. Peace, Butch

I just typed out an entire new update and then it disappeared. I need to go tend to Mary. I can't retype it all now. I will as soon as time permits.

Thank you everyone. First off, Jackson gained his angel wings at 4:30 this morning. He was in his Mommy and Daddy's arms. His big brother and sister flew in last night because they knew the time was very near. So he was surrounded by his family. Our hearts are broken for Mark and his family. Of course they have all of our family's prayers. Mary had her Yale appointment and they have raised her MS medication. Our son and his girlfriend have been great in picking up the slack from my immobilization. I will be starting PT in another ten days. It will be a long, painful, and cranky road back. But I've done it before. However, I was younger. Jackson's family are going back to CA tomorrow. Services to follow. I cannot begin to imagine losing my own child... Let alone a two year old. And burying him. Sorry for the somber news. Please just pray for his family. He is in his Auntie Shannon's arms now. How sweet is that. And many others. Goodnight.

I had emergency knee surgery Friday. I tore my ACL, medial meniscus, and lateral meniscus back in April 2005, then both meniscus subsequently in June 2006. I turned the wrong way trying to catch the door at the nursing home Thursday night. And felt as well as heard a snap and pop. Within an hour it was very swollen and stiff and I developed a fever overnight with redness, warmth and immense amount of fluid in and around the knee. Which apparently can become infected with the trauma to it. Had an emergent MRI which clearly showed both meniscus completely torn again. It had to be taken care of right away because of the fluid and infection. So I had surgery Friday afternoon. Got IV antibiotics until today. Came home today. In a knee immobilizer and with crutches. And a fancy ice machine that hooks to a device at my knee to cool it for swelling. It's basically a cooling chemical instead of the old fashioned real ice! My son is with me. He's seeing his Mom at the nursing home and taking care of things there. So, a little bump in the road here. Update on Baby Jackson. He is still in Memphis. He had a stroke. He had emergent surgery to remove part of his skull to relieve pressure. He isn't stable enough to get flown back to CA. His days are numbered sadly. Mark and his wife are having a lot of trouble making the right decisions regarding when enough is enough as far as measures to relieve the worsening effects of the tumors. I mean how does a parent make the decision to just stop it all. I'm very medicated. Mary's Yale appointment is rescheduled from Friday to next week. Our son will take her. I've got to try to sleep now.

So the decision has been made. Jackson and his Mommy and Daddy and baby sister will be going back to CA to be home with their family where hospice will take over. He will be life flighted from Memphis to CA in the next couple days. And Daddy will be going with him. Mommy and baby sister will fly home the same day but only one parent can go with Jackson. Drs are not saying how much time he has left. But Hospice will keep him comfortable and their whole family will be there. God only knows how much time is left. Mary ate tonight, a small amount. I brought her something tempting from home. And our grandsons came with me to see her. She enjoyed that.

Unfortunately, both our family and Shannon's family have always gone through very tough battles with loss, depression, abuse, divorce, family fighting. But we all have our journeys and crosses to bear. Everyone and every family. Mary is having a very tough day. Won't eat. Won't drink. Just staring outside the window of the nursing home. I'm not pushing her. I know her memories of today and the time leading up are there in her head and her heart. If I push, it will only make things worse. So I left. I'm hoping they will get her to eat later. Or at least drink a healthy shake. I even brought Little Man in to her. She really didn't even want to see him. I'm so sorry about your most complicated grief Kay. We went through some of that with Mary's birth Mom. It's difficult I know. I'm taking time this afternoon to spend time with our grandsons when they get home from school. And thank God for their health, in light of little Jackson's very ill health.

Hugs and prayers to you and your family Kay. I'm so sorry for your loss though from what it sounds like your Mom is where she wanted to be. Butch (and Mary. I told her about your loss and of course she remembers you and many here.).

Good news. Jackson is responding to antibiotics. His temps are much lower. When this infection clears more he will go into surgery to place a third shunt to help drain fluid and ease the pressure on his brain. He wakes and cannot see. Mommy and Daddy make sure he hears them. But at some point his brain tumors very well may take his hearing as well. He is but 28 months old. The fear is unimaginable. I pray God gives him more time. I pray though that he is given peace and comfort as well. NO CHILD should ever have to go through this nor a parent watch their baby suffer. I'm pretty sure at this point in the game, there will be no treatment for his ATRT. Only procedures to help give him gain more time and in that time, give him comfort. They have their five month old baby girl with them because she is still being nursed and is glued to Mommy. But she isn't allowed in PICU. There is kind staff that take her several hours out of each day. Jackson was signing the milk sign. He took sips from his sippy cup today. He was taught some signs before he was a year old. Anyway, it is fast approaching the 10th here. Mary and I are heavy hearted at it being a year since Shannon passed. Her family is too. But they are just trying to deal with Jackson and his comfort. I am taking tomorrow off so to be with Mary. The memories are tough. Even for Mary. I have to remind her of things. But she remembers a lot and hurts. Good night. Kay, God bless you. You must be beside yourself in grief for your Mom. I will pray for you tonight.

Hi all, Mary is not improving with the new medications she is on. But we are told she won't improve. The idea of the medications is to slow the progression of the MS and Parkinson's. Perhaps it will take a bit more time and need a higher dosage. She goes back to Yale to see the neurologist there Friday. Wednesday is one year since Shan's passing. So hard to believe. I spoke to her brother last night. They are still in Memphis. Jackson's condition is critical. His fevers are going up and down. He is on very high doses of antibiotics. The shunts placed are not working so well the last couple days with drainage of fluids in his brain. He is very well medicated for seizures because he had two Saturday night. He is not awake but rarely when pain is great. And he cries. They are really just keeping him comfortable at this point. And they are spending many hours just holding their baby boy. What can I say? They need a true miracle. This is unimaginably heartbreaking for them. For our family, Shan was our family. So, even for Mary, this one year anniversary Wednesday is very painful. Not that Shan's brother and family are not family as well... It's just we didn't really know them well until she got so ill and passed. And certainly I cannot imagine their pain with Jackson. It's just all so sad. But I pray every night with Mary. She holds prayer very dear to her. It is very much a connection to our lost loved ones. We pray that God will surround Jackson with peace and comfort. Good night. Early day tomorrow. Long day today. God bless. Butch Thank you for the prayers for Jackson.

I figured the registration process out... I am so wiped out, I was not thinking straight. My given name is Roy... But since before I can recall I've always been called Butch. So I just wanted to let y'all know its me Mary's husband. I'm turning in. She is sleeping hopefully I won't get a call during the night that she needs me. Baby Jackson is more awake tonight. He has lost his sight. And in a lot of pain. But Mommy and Daddy are there and playing his favorite Thomas DVD's he is laying listening. It's keeping him still. He's not that verbal so the major signs of pain are overall agitation and crying which really makes pressure and pain worse on his little head. The shunts placed are working and draining more than they expected. So the future is uncertain. They may decide on continuing treatment is his temp keeps lowering and his blood counts go up and this infection clears. It's possible he can have some small amount of radiation. But just the chemo drugs alone is terrifying. Goodnight everyone. And God bless you for taking time from your journeys to uplift baby Jack Jack up in prayer and Mary as well. Butch.