My son is 29 and has Marfan Syndrome. He is on disability due to this. He is very intelligent (really I am not bragging). I know that what affects the body also affects the mind. He is typical Marfanoid. 6'11", had heart surgery at 21, long fingers, scoliosis, etc. He has pretty much secluded himself in his apartment, keeping it dark with only one lamp. He plays on a computer with 25 or more people signed on at the same time SEVERAL times a week. He has jumped from one interest to another over the last 4 years. I know that at 29 he has to take care of himself, but he does'nt. I have had to tell him that he cannot come over to see me just when he wants something. And that is what he does. I think that he needs therapy, maybe xanax and an antidepressant. But he insists that he is alright. So I have had to let go. I pray for him to let God back into his life. He has God's salvation, but has left our community church. Does anyone have any ideas or encouragement to offer? Thank you and God bless you!
I know where you are coming from my son is 13 and was diagnosed with Marfan's at birth. He was also diagnosed with ADHD, which is very common with the Marfan's Syndrome. He even takes a pill to help him sleep at night. He is a very bright child. He ranked 11th in the nation in his math achievement test last year.
I don't have any experience with Marfan Syndrome, but I wanted to make a suggestion, because your son seems to be closing himself off. Has your son gotten involved in social/support groups for those with this disorder? He may find motivation and inspiration if he can spend time with others who share his life experience. I happened to find this site online: http://www.marfan.org/ and they appear to offer support services.
Maybe your son is "alright", and doesn't need therapy. Maybe he just needs to spend time interacting with people. Or, he needs to orient himself toward a goal. It sounds like he isn't working and maybe he's bored. Perhaps he could take classes on something that interests him to get him out there. The truth is that there are millions of people with disabilities that lead productive lives - working, learning, etc. I bet your son could be one of these people.
Help him remember that there is always hope -- perhaps he's forgotten :)
being secluded and in darken rooms will depress anyone and is not good for anyone. Maybe he also needs to be checked out even for biopolar,since you are and are taking meds. Go to his apartment and change all his curtains to white sheers and take the others away the hell have light during the day just say you want to help him with spring cleaning he may fall for it but hope things work out also get him into bingo so something like that maybe with you even just another idea
Don't feel alone in this problem. Just because he has a disability doesn't make him unique to the other problems. He probably has trouble making friends face to face, so in this day & age people crawl into their computer. He has no trouble interacting with the people in the game & actually considers them "friends". I have seen many people do this. He probably doesn't bathe regularly or eat as he should either. Their is really nothing you can do for him except pray & encourage him to get counseling. Don't discourage him from coming only when he needs something. Use it as an opportunity to do something with him....eat at a restaurant, go to a movie, shop for clothes together or invite him to church or a special event at church. Don't give up on him although it's frustrating. You are all he has. Always make sure he knows you love him. Send him little cards of encouragement. This will probably be the only kind of mail he gets besides bills. Buy the kind with scripture on them & add a note of encouragement. Send him reminders of something you want to do with him & go visit him. He needs you to draw him out of his "cave". Make sure he knows you're coming so he's not playing online. This would feel like an intrusion to him & hurtful to you when he makes you feel unwelcome.
C.,
I don't really know what Marfan Syndrom is...but if he's living on his own, think of where he could be turning. He comes to his 'mother' (at the tender age of 29). Try to be honored that he's coming to you. I shudder to think of what he could be doing.
As far as being saved...is he able to get to church? (i.e. Does he drive?) Do you go - if so, take him with you. He'll eventually come back if he truly belongs to the Lord.
Proverbs 22:6
Train up a child in the way he should go: and when he is old, he will not depart from it.
Hey, BTW...I'm on meds too. I have a mild case of Ep brought on from a Tramatic Brain Injury. I'm on Lamictal. It works well if I don't forget it. I've been a 'user':) since '06 and I need this possibly for the rest of my life...it's an expence!
Back to your boy...I know it might be aggravating that he so dependant on you...but think of what he COULD be dependant on. Feel HONORED...it's a HUGE Blessing that he leans on you.
Your friend, L.
I see that someone else has already given you the Marfan website, although I suspect he has already been there since he is on the computer so much. I would also suggest Tall Clubs International. A friend of mine who grew up in the Cleveland area is the president of the New York City chapter. He has already shared quite a bit of his knowledge of Marfan's with me. TCI clubs hold fundraisers for the Marfan Foundation and I'm sure he would be happy to help you find assistance in the area. He can be reached at ____@____.com, your son might consider joining TCI. He would have an opportunity to socialize with others with the same or similar circumstances. To join you must be over 21 and men must be at least 6'4", while women must be at least 5'10". I don't know much about the local organization, but have heard great things about the clubs in the Columbus and Cincinnati areas, as well as New York. I believe they have a free trial membership period. He would be able to give you that information as well. You are right that your son has to take care of himself. Being the mother of a 6'6", 20 year old son I can sympathize with some of what you are dealing with. My son has not been diagnosed with Marfan's, but does have some medical issues already because of his size and he may not be done growing yet. All you can do is provide him with as much information as possible and keep praying. I will keep you both in my prayers as well. God bless you both!
I really think your son needs to be checked out by his doctor. Depression can be associated with Marfan. I also wonder when was the last time he had an echocardiagram done? His lack of involvement in activities outside the home could be due to physical fatigue. The darkness in his home could be because of failing eyesite. Please encourage him to get a full check up, and maybe even call the doc yourself to discuss depression. I think he could easily benefit by an antidepressent. There is no shame in needing one. Your son is dealing with so many physical stresses, that it is perfectly normal to have his emotional health comprimised. Bless you for being a good mom and trying to take care of your adult son. It isn't easy, and you are doing all the right things! Keep us posted!
L.
I wish I had something to offer you but my offer to pray for him. Does he have any friends that can encourage him out? DO you have a youth pastor that could take an interest him and stop by and visit just to start a friendship. I agree he needs to see someone for counseling. Maybe from your church. Talk to someone you feel comfortable with at your church and ask them to pray for him also. You need also to be taking care of yourself. Maybe you can find a support group to help you and ultimately your son. May God bless you.
Has your son ever tried to contact any others with Marfan in the area?
It might be good for him to be able to talk with others who have it and are able to cope.
I know that there are others in the Indianapolis area.
Perhaps he could ask the doctors who have treated him to put him in contact with another Marfan person.
I understand completly . My daughter is 19 and has marfan's and is on disability as well. She is not depressed but she has learning disabilities. She loves the Lord and is in church but deals with feeling down . She is only able to work as a bagger one day a week because she gets weak . I would like to keep in touch for support . She does not know anyone else that has marfan's .
A.
I cannot offer you solutions or advice but I can offer you comradery. I have Ehlers-Danlos syndrome which is in the same category as Marfans. In fact, that is what the doctors originally thought I might have. I was diagnosed a year
ago. I am 55! I am the mother of 2 adult children. So i can understand your heart ache on both sides if your problem. As a newly "disabled" person, I find that I am still grieving the person I was and planned on being the rest of my life. Someone active and strong and healthy. It's heartbreaking, people look at me and can't see my pain so it is difficult for them to believe that I am disabled. Add that to the depression created in the grieving process and you can understand why he has closed himself away. On the other hand . . .as a mother of a thirty something son and a thirty something daughter . . .I know your heart ache. My son is handsome, intelligent and creative but he is a son and doesn't always think about dear old Mom. It seems the majority of adult men tend to come home for a visit when they need something. My lives too far away. His life has been fraught with difficulties, many because of the paths he has chosen to walk. All I have been able to do for him is to promise that no matter what life brings I will always be his mother, regardless of what he is going through, as his mother I will love him unconditionally. It has taken him 36 years to understand that. I pray that your son is learning all that he can about his condition and is seeking out others with the same or similar conditions.
Just try to let go and let God carry this for you. All that you can do for him is to be there, be supportive and let him find his own way back to the light. Right now, my son checks in with me almost daily just to let me know how his day is going otherwise I might panic, he finally gets that. It took 35 years and my major melt down on the phone but he finally realized that once your a Mom you are always the Mom, and love is unconditional I don't just love him when his life is good.
My daughter used to be very close with me. She is angry with me because I have stood by my son. She picked him up dusted him off and they had a major falling out. I told them both I was neutral and would not take sides. My daughter believes that in supporting my son I took his side and stopped talking to me for quite awhile. The good news is we are talking again, providing I call her first. Even then it is a cordial phone call, not the beautiful mother-daughter bond we once shared. But still there is hope.
You and your family are in my prayers.
