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hi

My name is Jackie I have Progressive MS. I have been living in a nursing home for the past year and 9 months. Down to where I can barely move one hand. I have joint custody of my 14 year old son whom I have not seen since last February. He is now not responding to my phone calls text or cards. Was hoping to get some advice on this subject. Has anyone out there been in a similar situation?

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Sorry to hear about your situation. It sounds like he feels alone and abandon and he don’t want to see you like this. Give him time and hopefully he’ll come around. Don’t lose the love and hope. Good luck.

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I'm trying. It's just tearing my heart apart.

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Oneson I"m so sorry, MS can be extremely isolating. I have a teenager, and they are so hard to communicate with even in a family with 2 parents and no health issues. I have a couple of thoughts......teen years are a time when kids start wanting their independence from their parents no matter the circumstance. They start spending more time in their room and with their friends and not so much with their parents..... this is all normal and prepares them for going out into the world when they are 18. Also, its a time when homework can skyrocket and school can take up a lot of time and stress --I have a senior and the pressure even when she was a freshman of grades etc to eventually get into college is out of control, at least where we leave. Finally, 14 year olds are very focused on themselves developmentally which also is normal.

I would suggest writing him a letter telling him you've been thinking of him and would love to hear about him, his school, classes grades, sports, friends --(anything he's interested in). Let him know whether it's a quick note or a visit it's okay, you know how busy he is. Maybe also say you realize how difficult it must be for him without 2 parents and having a sick mom. Tell him that doesn't take away from how much you love him and you are always there for him no matter what. Thats just my 2cents. xoxo

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I started a letter to him a few days ago. Previous cards have gone and responded. Let's hope this jolts him into responding. Thanks for your help.

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Oneson I hope he responds too💜💜💜, keep us posted. Sending you a big hug!

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Welcome, Oneson . So sorry to hear about what you're going through. 'Why are you in a nursing home when it sounds like you're getting worse, not better. Do you get PT and OT there? Has anyone mentioned trying you on Ocrevus or another DMT? I am sure you feel completely abandoned, and I am so sorry for that. It just may be that your boy is afraid to see you like that. Many children don't like to see their parents in pain or unable to be their usual selves. I would try to talk to the social worker at the nursing home about this issue. Maybe (s)he can help intercede with your son. Best of luck. Blessings for improved healath, Sukie427

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I am in a nursing home because I could no longer afford the 24-hour I needed for the previous year. I am getting worse not better. My PT and OT health insurance benefits have run out.. So I no longer receive that.

My neurologist started talking to me about Ocrevus 3 years ago when I had full use of both arms. But when I was supposed to start in September my immune system weak and too much. I have been getting much worse since then. I don't know what DMT is.

Thank you so much for your help.

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My child at that age really wanted nothing to do with me. It's a very frustrating and selfish time in life especially for adolescence boys. Thoughts and prayers. Xxoo.

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Thank you. You guys are helping me to feel like I am not the only one.

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Oneson, families are funny. I only had one Son, who did the same thing at 14. He is now 50 and is an awesome father and husband, but still doesn't have much contact with me unless I initiate it. Here is my thoughts: "The best you can hope for is for your children to be happy and if this makes him happy - then it is OK with me."

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Can I put my 2 cents In I have two boys they are 20 & 28 when I was diagnosed they were 8 & 16 my 8 year old was a sweet little boy now my 16 year old he was having teenage issues he thought he new everything. I had a saying after he got through that stage of his life. You loose them at a time and they always come back.

When you were diagnosed how old was he.

But you have to understand and I’m sure you know this, all children have there own way of dealing with things in there life.

Just because he doesn’t communicate with you it doesn’t mean you need to stop. How is Dad will he help you in trying to get your son to communicate with you, even if it’s too get him to text you and not just to say hi. If you know what I mean.

I hope this helps you.

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I was diagnosed in 2000. I had him in 2003. His father will not talk to me and is truly mad at me for any reason I don't know and is glad he can think of me as dead.

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Oneson I am so very sorry for your situation. I am sure you might feel discouraged just about the MS alone, but throwing in family struggles just adds to your stress. I have eight children, all grown now. Five sons, three daughters. My boys and I were always close, but boys are really a mystery when they are teenagers! I suspect your son has some fear, perhaps he does not realize that we don’t die from MS. Just keep reaching out, keep praying for his happiness and I would do what was already suggested, get a social worker involved. I will stay in touch. Blessings and love to you, Kelly xx

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Thank you so much.

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Ah. The lovely Angel Monsters 💕 Oneson There is a reason they are called that!💕 Because Holy Crow when they turned that age it was seeing a 👹

Mine are all older now, in their 20's and I just shoot them texts that say I love you! Sometimes I get an answer others I don't, but they know I'm there for them! Always!💕

Welcome, btw!😀

Jes 🌠

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thank you

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How are you doing today Oneson ? Are you going to do anything fun?😊

We would love to here from you!💕

J 🌠

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Not one damn fun thing. I use a power wheelchair but can no longer the controls. So unless I made can take me to some activity of which there are few then I am pretty much stuck in my room on my phone. And because I lived 2 hours from here I rarely get visitors. So got anything to cheer me up?

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Well, what do you do on your phone? 😊

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I know I am supposed to look at the positive but there are too many negatives piled up. I am at the point where I can now only use my phone because I can only use my hand a few hours a day if at all. so I used to do all kinds of stuff on my phone but now it is the bare minimum.

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No one said you HAD to look at thing positive Oneson . But it does make life easier.😊 I know what fighting the world is like, and it's hard to let go of that.

We would love to hear more from you!💕 We all Love funny posts?😀

You have friends here that CARE!💕

~Hugs n Luvs ~

J 🌠

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This breaks my heart to hear. I can’t imagine my cuddly little 2 year old son acting like this some day but I know it is a possibility.

I agree with other suggestions-can Dad or another family member facilitate visits?

When I was his age my grandfather had a stroke. I hated seeing him in bad shape and I avoided visiting as I thought it was better to remember him from happier times. I regret that deeply now.

Can you put him in touch with a support group that caters to kids with sick parents in his area? Anyone here know if that exists?

I’m sending prayers and good thoughts your way. Feel free to vent here any time-these folks are amazing!

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thank you

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Well I am glad you are trying to contact him I hope it works. Do you have a relative who can help you maybe get your son to come and visit you. Good luck in whatever you do don’t give up.

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My heart aches for you @Oneson. You have a lot of darkness to fight through to find the light at the other side of this battle. I am 71, a grandmother, but I can remember vividly, painfully, the year when my only child, a daughter, turned 13, then 14. She became a stranger, a cruel stranger. She started spending weekends with 2 very younger girls, because she preferred their mother. Oh, how that drove a knife in my heart. The years before that we had so much fun, so many hours of togetherness, so many hours of shared times. Overnight, she walked out of my life, even while living under the same roof. I tell you this so you will not blame yourself or your illness. It seems to be the majority of the cases for teenagers. What was sad was that this same pain repeated itself with her sons. Because of circumstances, I was instrumental in raising her two sons, and they followed the same pattern. One day they needed me; the next day I was a stranger to them. Is there anything more painful? As the family psychologist Dr. Dobson advises us, " we must give them roots, then give them wings." Unfortunately, they want their wings much earlier than we are ready to give them. Also, when we give them wings, it seems our only job remaining is to pray for them, for they don't seem to need us anymore. I send cards, but do not receive any in return. That's okay now. I send gifts, but do not receive any in return. That's okay now. I call and leave messages, or I send texts just stating my love. I just remind them I love them, I am praying for them, I am here, I am their guardian angel watching over them with my prayers. I have learned through much counseling and prayer not to take silence as rejection, not to take lack of visitation as lack of love (no one visits us even though between my husband and I we have 3 daughters, 9 grandchildren, 12 greatchildren), and to accept that everyone is living their lives the best they can to fulfill their jobs, their schooling, their social lives, and whatever else is important to keep them going at this time. I did what God wanted me to do; I fulfilled the job He gave me to do; now I do what I can to keep His temple, my mind and body, as healthy and peaceful and I can to worship my Savior and put my loved ones in His Care every morning, every evening. I pray you can do this, also.

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I hope you'll understand how wonderful it was to read your post. It really hit home. Thank you for understanding my situation and putting it into perspective for me.

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