Help 17-yo Son’s Meltdown

[Blackjack]

In addition to watching his Mom dying a slow, painful, terminal death due to ALS/Lou Gehrig's Disease, everything that can go wrong in my 17-yo son's life since school started a mere month ago has gone wrong; from getting cut from the basketball team for the first time ever, to losing his brotherhood of basketball friends that he's had for years due to their shared passion for the game, to his first girlfriend moving away, to his car breaking down. Now he hates school and getting him to go is a daily battle because his motivation for keeping his grades up was always tied to basketball eligibility. His entire HS plan has been derailed because of it and he is reeling.

Tonight he had a complete & total meltdown of epic proportions. I've never seen him like this. He told me that he's never felt anything remotely similar to this and on top of his basketball/girl/friends/car issues, he tearfully admitted that he's terrified about my deteriorating condition & imminent death (mind you he has no idea I'm planning on exiting early in less than 2 weeks.)

Watching my beloved son cry buckets about his genuine heartbreak over everything in his life going to shit in the last 30+ days is beyond excruciating. The pain is visceral. Not being able to help him is probably the worst pain I've known. I'm terrified for him and what will happen when I'm gone in 15 days. It will be the ultimate blow to the shitstorm that has been the start to his Junior year.

What the fuck am I going to do? How can I leave my kid like this? Why is this world so fucking cruel that this young man can't even catch a break in other aspects of his life to soften the blow of his Mom's impending death? He doesn't deserve this. He's a good kid who has never given me any of the usual teenage challenges with partying or grades or anything like that because he was always solely focused on basketball. He is now at risk for every potential bad behavior/choice because he'll feel like he has nothing to lose, especially after I die. Fuck you universe! It's not enough that you destroy my life, you have to destroy my kid's in the process?

Oh my fucking God, what am I going to do? Should I delay or altogether abandon my plans to exit early? I'm dying either way and can't do a goddamn thing to help him, but my dying in a matter of days will most certainly send him over the edge. What kind of Mom would I be to abandon him now? Someone please make it stop. My heart is breaking in to a million pieces thinking about what's going to happen to him if I go now. I am beside myself with worry and don't know what to do.

 

[Stan]

I had to read for 10 minutes because I want to say something to try and help but the words are failing me Blackjack.

I think in the scale of things you come top of the concerns and that is just the setting for everything else. 17 years old is when you start to appreciate more the adult stresses because they are way more conscious of things now that were probably right in front of him before but couldn't recognise.

You didn't say why he was cut from the team, is it reversible? maybe if his dad spoke to the coach or school and explained your son's home situation and maybe give him a break or at least allow him to keep training with the team to maintain some stability in his life. Its only going to be a benefit for him to be with friends now and in the future.

I can't even touch your last paragraph. Only you know. its a 'damned if you do, damned if you don't' scenario and it would be irresponsible to tell you what you should do.

I truly wish there was a way to help

 

[Blackjack]

I had to read for 10 minutes because I want to say something to try and help but the words are failing me Blackjack.

I think in the scale of things you come top of the concerns and that is just the setting for everything else. 17 years old is when you start to appreciate more the adult stresses because they are way more conscious of things now that were probably right in front of him before but couldn't recognise.

You didn't say why he was cut from the team, is it reversible? maybe if his dad spoke to the coach or school and explained your son's home situation and maybe give him a break or at least allow him to keep training with the team to maintain some stability in his life. Its only going to be a benefit for him to be with friends now and in the future.

I can't even touch your last paragraph. Only you know. its a 'damned if you do, damned if you don't' scenario and it would be irresponsible to tell you what you should do.

I truly wish there was a way to help

You didn't say why he was cut from the team, is it reversible? maybe if his dad spoke to the coach or school and explained your son's home situation and maybe give him a break or at least allow him to keep training with the team to maintain some stability in his life. Its only going to be a benefit for him to be with friends now and in the future.

Not reversible unfortunately...cut throat competition for 1 of only 24 slots out of hundreds of boys. He's made the competitive cut the last 2 years, but I have my suspicions that his (mental) performance due to his Mom's imminent death sentence may have negatively impacted him this year. How could it not? His coaches know of my medical diagnosis since he's been part of the basketball program since starting HS, but I would never dream of asking them for special consideration for him because of it. Besides, my son would be mortified if I did (as I learned when I reached out to all his new teachers at the beginning of this school year to give them a heads up about it.) He would never want to be considered a charity case if he didn't genuinely earn a spot on the team this year. And being around the team but not being a player would just torture him even more. He's now on the outside looking in and it's a brutal existence for him, particularly not having his girlfriend around anymore who could have helped serve as a much needed distraction during this difficult time. He's getting a crash course in how fucked up and unfair life is at the tender age of just turned 17. And I feel overwhelming guilt about bringing this sweet, innocent boy in to this fucked up & unfair world.

 

[Stan]

I can only give practical advise on the sport thing through my two sons. They both play rugby and love it. My youngest is a demon and was invited to play in the juniors for one of the pro teams, the eldest just couldn't make the mark no matter how hard he trained. In one of the few conversations I have had with them they went through the story. I congratulated the youngest and then spoke to the eldest. "do you like playing rugby?" "yes" was the response. "is it all or nothing for you? And I mean if you are not playing for a big team would you still love playing the sport?" He took his time thinking about it and replied "well he (the brother) is playing for a big team" I responded "yeah, that's him - what about you just playing because you enjoy it?" He is now player for a smaller team and enjoys it. He is going to university now so even that will change as he is hundreds of miles away but he knows he is going to look out for a team to play in.

Kids or young adults have a great way of boxing themselves in, its part of our care and education to let them know there can be other options. Also disappointment is a fact of life. Some are huge and some insignificant in the grand scale. I have an opinion that if you were not ill that this would be severe for him, but your situation is like the straw to the camel's back. it sounds like his first big disappointment and we we all know life can deal bigger ones. Sadly we can't protect them forever

 

[JesterThrowAway]

Blackjack,

I never have had father's support but I often think how easier would be my way through stuff had he been there for me. Especially during situations when whole world is against you, this support would mean a lot.

A lot of people here, including myself are thinking of exit because there is no point. No contribution. No love we can share, noone needs it.

It seems like your case is a bit different, if you pardon my judgement. Your son might not make it long given the circumstances if you decide to go. And he needs your support more than ever. As it may seem to a total stranger, regardless of amount of terrible pain your family are going through - you do have a reason to stay here for a while.

Regardless of your choice - may our love and support be with you and your son.

 

[Rachel74]

You need to delay for your sons sake, you brought him into this world and you need to support him, if you ended it now it would destroy him.

 

[sanction]

Don't mean to cause you more stress, but from a logical stand point, your son is going to have an extremely rough time and crazily long road ahead of him after you are gone. Who's going to take care of him and/ or support him financially afterwards? Who's he able to rely on? After your CTB, I don't think even if he was the champion in his high school basketball team would matter much, compared to his personal life struggles. His world will obviously crumble, and will eventually lead to who knows what..... I'm sorry you're going through tough times and everything, but since you asked for advice, my honest gut feeling is that it will affect him a lot. Theres a chance he may end up CTB-ing too down the road. What health issues or medical conditions are you currently going through, if you don't mind me asking? Or what is making you want to CTB?

 

[Stan]

Theres a chance he may end up CTB-ing too down the road.

That is a terrible thing to say to someone who is already in great distress

 

[Rachel74]

That is a terrible thing to say to someone who is already in great distress

It is but being a realist here its a possible chance this could happen.

 

[Stan]

It is but being a realist here its a possible chance this could happen.

If you haven't taken time to read and remember Blackjack's story and fully grasp her situation then put the 'off the cuff' remarks away. I am practically fuming with that

 

[Blackjack]

I can only give practical advise on the sport thing through my two sons. They both play rugby and love it. My youngest is a demon and was invited to play in the juniors for one of the pro teams, the eldest just couldn't make the mark no matter how hard he trained. In one of the few conversations I have had with them they went through the story. I congratulated the youngest and then spoke to the eldest. "do you like playing rugby?" "yes" was the response. "is it all or nothing for you? And I mean if you are not playing for a big team would you still love playing the sport?" He took his time thinking about it and replied "well he (the brother) is playing for a big team" I responded "yeah, that's him - what about you just playing because you enjoy it?" He is now player for a smaller team and enjoys it. He is going to university now so even that will change as he is hundreds of miles away but he knows he is going to look out for a team to play in.

Kids or young adults have a great way of boxing themselves in, its part of our care and education to let them know there can be other options. Also disappointment is a fact of life. Some are huge and some insignificant in the grand scale. I have an opinion that if you were not ill that this would be severe for him, but your situation is like the straw to the camel's back. it sounds like his first big disappointment and we we all know life can deal bigger ones. Sadly we can't protect them forever

Thank you for your thoughtful response.

Blackjack,

I never have had father's support but I often think how easier would be my way through stuff had he been there for me. Especially during situations when whole world is against you, this support would mean a lot.

A lot of people here, including myself are thinking of exit because there is no point. No contribution. No love we can share, noone needs it.

It seems like your case is a bit different, if you pardon my judgement. Your son might not make it long given the circumstances if you decide to go. And he needs your support more than ever. As it may seem to a total stranger, regardless of amount of terrible pain your family are going through - you do have a reason to stay here for a while.

Regardless of your choice - may our love and support be with you and your son.

Thank you for your thoughtful response.

You need to delay for your sons sake, you brought him into this world and you need to support him, if you ended it now it would destroy him.

Thank you for your thoughtful response.

Don't mean to cause you more stress, but from a logical stand point, your son is going to have an extremely rough time and crazily long road ahead of him after you are gone. Who's going to take care of him and/ or support him financially afterwards? Who's he able to rely on? After your CTB, I don't think even if he was the champion in his high school basketball team would matter much, compared to his personal life struggles. His world will obviously crumble, and will eventually lead to who knows what..... I'm sorry you're going through tough times and everything, but since you asked for advice, my honest gut feeling is that it will affect him a lot. Theres a chance he may end up CTB-ing too down the road. What health issues or medical conditions are you currently going through, if you don't mind me asking? Or what is making you want to CTB?

Thank you for your thoughtful response. I'm dying of ALS/Lou Gehrig's Disease.

That is a terrible thing to say to someone who is already in great distress

I did ask my son last night because he is so distraught if he had any thoughts of hurting or harming himself in any way, and he said no. But it's a concern for me, for obvious reasons.

Don't mean to cause you more stress, but from a logical stand point, your son is going to have an extremely rough time and crazily long road ahead of him after you are gone. Who's going to take care of him and/ or support him financially afterwards? Who's he able to rely on? After your CTB, I don't think even if he was the champion in his high school basketball team would matter much, compared to his personal life struggles. His world will obviously crumble, and will eventually lead to who knows what..... I'm sorry you're going through tough times and everything, but since you asked for advice, my honest gut feeling is that it will affect him a lot. Theres a chance he may end up CTB-ing too down the road. What health issues or medical conditions are you currently going through, if you don't mind me asking? Or what is making you want to CTB?

His Dad will take care of/financially support him when I die. He also has an older brother in another state who will likely come home for a while. And while his Dad loves him and is a good father, he does not nurture him like I do as his Mom. Plus I fear that his Dad's & brother's own grief over my death will be significant and pose its own challenges for all of 3 them. We don't have much in the way of other family support, unfortunately.

 

[Blackjack]

After reading my detailed story, please vote on whether I should delay/cancel my early exit plan. Your input is important to me because I have no one I can talk to about this. Please know that your one vote, or the collective of the votes, will not determine my fate. I am just curious as to others opinions as I process my impossible situation. My family or friends have never been on board with my desire to exit early so I really am all alone. Thank you for your thoughtful consideration.

 

[Jolene40]

That is a terrible thing to say to someone who is already in great distress

Super unhelpful I agree

If you haven't taken time to read and remember Blackjack's story and fully grasp her situation then put the 'off the cuff' remarks away. I am practically fuming with that

Rachel, pointless and unhelpful comment. I know we are all in pain but nothing comes close to the pain one feels for their child - and the guilt.

 

[Wayfaerer]

Although it would be ideal to delay for a better time as to not overwhelm your family, would waiting for a better time be the best? Even if he gets things back on track a little bit later, do you think that'd make things worse for him when things are getting better and he's even more disappointed?

It's really a tough call. The later stages of ALS are horrifying and I wouldn't expect anyone to go through that voluntarily. I'd say to delay as much as possible but at the same time not to delay for too long as to where you would have to endure til the very end. I'd make sure he understood that ALS is a non-recoverable disease ahead of time unless he already understands that. Otherwise, he would only get his hopes up. All of this, of course, is only my honest opinion and I don't know what it's like to be in your position.

 

[Jolene40]

After reading my detailed story, please vote on whether I should delay/cancel my early exit plan. Your input is important to me because I have no one I can talk to about this. Thank you for your thoughtful consideration.

Dearest black jack, this isn't the right way. There are many callous nut jobs online so asking them to determine this for you is not in your best interests.
If you can delay, if you have the strength left then this is best. But no one can or should make you endure the unendurable.
Does your son have counselling? Can this be sorted for him? Does he have a good relationship with his dad? I'm thinking of things that may give you minimal comfort knowing you will be leaving one way or the other. I assume he knows this is terminal for you. Xx
9

 

[Rachel74]

Super unhelpful I agree


Rachel, pointless and unhelpful comment. I know we are all in pain but nothing comes close to the pain one feels for their child - and the guilt.

I agree and I am sorry if it caused offence. I am not a parent so I can't grasp that reality xx

If you haven't taken time to read and remember Blackjack's story and fully grasp her situation then put the 'off the cuff' remarks away. I am practically fuming with that

I did read all of the thread and yes I agree my comment was especially cold. I have personally apologized to blackjack.

 

[Stan]

Dearest black jack, this isn't the right way. There are many callous nut jobs online so asking them to determine this for you is not in your best interests.
If you can delay, if you have the strength left then this is best. But no one can or should make you endure the unendurable.
Does your son have counselling? Can this be sorted for him? Does he have a good relationship with his dad? I'm thinking of things that may give you minimal comfort knowing you will be leaving one way or the other. I assume he knows this is terminal for you. Xx

Agree, we have seen too many idiots over the past few weeks here and some who I don't believe are here for the same reason as the majority of us are so the result will be skewed.

 

[omoidarui]

this is an incredibly personal decision so I'm just speculating but not voting, if your death is inevitable anyway then won't your son understand (not now but in the future) your need for peace and dignity?

 

[Soul]

@Blackjack I'm so sorry you and your son are struggling with all this. I have no advice; only something I heard someone say about parenting: Each child teaches you what to do, what s/he needs. (((Hugs))) to both of you.

 

[Meretlein]

None of us can tell you what to do in this situation. We can only tell you what we would be most comfortable with ourselves based off a one post on a forum. For me it would be going through with ctb. Maybe delay it a bit but watching my mother die slowly of such a horrible disease would be worse than her peaceful suicide.

I am much younger than you and not a mother and even if I was, no situation is the same.

I am so sorry something like this has happened to your family. I hope you all find the peace you deserve.

 

[Letmego. Please]

Umm i am at a loss to say anything that will be helpful, or i doubt i could anyway, but by god you are in an impossible situation. I have only ever seen the destruction of ALS from the distance of being a child to a relative & that in no way gives me any right to say one way or the other.

I have clicked on one of the above in the hope it will help, but didn't want to leave it without also saying i am so sorry xxx

 

[Rachel74]

I am going to start again, as a parent I can't understand what you are going through. Your son is already grieving the loss of you and you are still here, I was the same with my mom when she was dying from lung cancer, the minute we knew it was terminal I starting grieving for her as all hope was lost. I don't know you or your son but you probably don't realize that your son is probably stronger than you think.

 

[gingerplum]

Hi Blackjack. I admire you taking control of your own situation; having an exit plan is the only reasonable option with ALS. I'm so sorry it has come to this for you.

I understand ALS, and I have an 18 yr-old son.

You need to remain with your son until your condition won't allow you to function in a meaningful way anymore. He needs you. If you leave him now, during this critical time, it will irrevocably alter the course of his life. He may even internalize it and blame himself for causing you stress.

Meanwhile... he knows your condition is deteriorating, and that your death is imminent. You need to have a heart-to-heart with him about what's going to happen, mostly about the plan you have in place for him after you're gone. Tell him you would be there for him until the end of time if you could, but unfortunately this disease has robbed you of that... robbed you both, really. I think the best you can do is have a detailed plan in place that he's aware of. An explanation of what will happen, how things will change, who will take the place of things you do for him, counseling services you've set up, the support network that's in place, etc.

He fears losing you, and the unknown of what his life will be like without you. Fear of the unknown is terrifying; maybe you can allay some of that anxiety if he knows exactly what's going to happen when you're gone. I would even buy and put aside some gifts for him that his father or someone else can give him for his graduation, birthday, etc, from you, even though you can't be here... it'll be like you're still looking out for him from beyond.

Stay with him as long as you can, Blackjack. When the time comes that you just can't do it anymore, he will understand.

As an aside, I think it's complete shit that your kid played his heart out for 2 years to get cut from a team. That coach should be fucking ashamed of himself.

 

[k75]

I am so sorry you're in this position on top of everything else. The first question you have to figure out is can you afford to hang on longer or will you miss your window to take control, so to speak?

If you have more time, then your main concern is your son. I'm not wise or insightful, and I don't know what it's like to have ALS, but I have raised a teenage son and dealt with a life threatening illness while doing it. All I can do is tell you what I did, if you're interested. If not, go ahead and skip the rest of this.

I'm a single mom. I was diagnosed with an aggressive form of breast cancer with lymph node involvement, and because of my young age and treatment options, none of my medical team thought it was going to go in our favor. My son was a few years younger than yours at the time, but he was aware of my situation. My instinct was to shelter him, but I didn't, although I didn't let him know how bad it actually looked. I'm still not sure if that was right or wrong....

Anyway, I was basically preparing to not be around for him anymore. I set up as strong a support network for him as I could. I focused on keeping his life as normal and stable as possible, because I thought that would help him cope in case I didn't make it.

I had to relocate for treatment, but I thought it would be best for him to stay behind so he would be in a familiar setting with all his friends and everyone he knew. I arranged for close family to take care of him. Things like that. Selfishly, I also left him to protect him from having to see me get sick and bald and probably die, but that has always haunted me. I'm not sure that didn't cause more anxiety for him in the end. Teenagers act tough, but they're still so fragile.

Probably the biggest thing I did was set him up with grief therapy. I wasn't gone yet, but I thought maybe it would give him tools and support after I was gone. I worked with his school counselors as well, and we had a good after school program for him. Basically, I got him all the positive adult support I could think of, so he always had someone to turn to or who had his back.

I wasn't detailed about it, but I kept him updated on my condition. Unknown is scary and stressful and reality sucks, but knowing even a little gradually helps it not be a massive shock you can't recover from, I believe.

I tried to build good memories for him to hold onto. If you can hang on for just that little thing, I think it would help him so much. I also started planning for the future a little. Like, I started to collect gifts and notes to him for future things. Made secret little voice messages, stuff like that. I got him presents to be given while I was here, too. I think it helped ground him a bit.

I think whatever you do and however you do it, the most important thing is to do your best to make sure your son knows how much you love him, and how proud you are of who he's becoming, and that none of this is his fault. It's teenage nature to self-blame, so counteract that any way you can think of.

I don't know if any of my experience will be helpful at all to you, but I really hope you can find something useful in there. I know you'll do the right thing, no matter what that is. Good luck.

 

[Morphinekiss]

The only thing I can think to add that hasn't been said is have you considered getting him into therapy now? He knows you're dying, he sees you dying in front of him. Everything I know about teenagers from teaching for many years tells me that he is not capable of coping with that without help. Previously he had basketball and I'm sure that worked a great deal to channel out some frustration, focus on the sport, etc. but that's gone now.

As much as we tend to dislike therapy on this forum, I do think some kind of counseling now will help him come to terms with your imminent departure, so he atleast has a foundation of coping skills for when the event does happen. Whether it's by your own hand or naturally.

 

[Sirius]

I'm searching for something profound and comforting to say, but alas, I'm at a loss. I can only present so ideas
If your ALS has progressed to the unbearable state for you, it most likely is for him as well.
IF you wait, you must consider not to wait so long as to not have the faculty to do the job right
I would ABSOLUTELY dig, beg, advocate to get him into counseling NOW, so he has legs under him when the time comes.
on a MUNDANE level: is there any other sport/activity he can throw himself into?

 

[arelia]

[...]
Oh my fucking God, what am I going to do? Should I delay or altogether abandon my plans to exit early? I'm dying either way and can't do a goddamn thing to help him, but my dying in a matter of days will most certainly send him over the edge. What kind of Mom would I be to abandon him now? Someone please make it stop. My heart is breaking in to a million pieces thinking about what's going to happen to him if I go now. I am beside myself with worry and don't know what to do.

Have you spoken to his father about all of this? If the two of you can come up with a plan then at least he knows what to do after you're gone.
My first thought is you should stay but then if you miss your window of opportunity, your son is going to have to witness your 'natural' death and the memories of that will probably cloud any good things, whereas if you go now then he'll still have good things to remember you by (if that makes sense)
He's 17, perhaps he should be included in your discussions with your husband. At least he'll know you respected him enough to allow him to participate in the decisions about counselling and the like. Perhaps afterwards even talking to him about the option of you leaving the family earlier and why you're considering it?

I don't envy you one bit with the choices you have to make, I wish there was another way for you and I'm dreadfully sorry that your family has to go through this.

 

[mynameispaige]

My mother had pancreatic cancer and died when I was 13 years old. I had to watch her body slowly deteriorate until she wasn't even herself anymore. I would've forgiven her if she chose to end her own life. It would've saved her from unnecessary suffering. I was not ok before her death. I was an absolute mess of a teenager. I was even suicidal at that age. But her ending her life wouldn't have made me do it too. I know I would've forgiven her. I won't tell you if you should or shouldn't do this. But I highly suggest talking to your son and make sure he knows that your illness will end your life soon anyways. He has to know that a natural death from that disease will not be an easy one. If he doesn't understand that he won't understand why you chose to leave. Maybe leave him a letter explaining all of this to him, telling him you love him, and give any advice you have for him for his life. Give him something he can hold onto for forever. I suggest doing that for his older brother and your husband too. I'm so sorry for what you and your family are going through and I hope you all find peace.

 

[Blackjack]

Have you spoken to his father about all of this? If the two of you can come up with a plan then at least he knows what to do after you're gone.
My first thought is you should stay but then if you miss your window of opportunity, your son is going to have to witness your 'natural' death and the memories of that will probably cloud any good things, whereas if you go now then he'll still have good things to remember you by (if that makes sense)
He's 17, perhaps he should be included in your discussions with your husband. At least he'll know you respected him enough to allow him to participate in the decisions about counselling and the like. Perhaps afterwards even talking to him about the option of you leaving the family earlier and why you're considering it?

I don't envy you one bit with the choices you have to make, I wish there was another way for you and I'm dreadfully sorry that your family has to go through this.

Thanks for your thoughtful response.

Although it would be ideal to delay for a better time as to not overwhelm your family, would waiting for a better time be the best? Even if he gets things back on track a little bit later, do you think that'd make things worse for him when things are getting better and he's even more disappointed?

It's really a tough call. The later stages of ALS are horrifying and I wouldn't expect anyone to go through that voluntarily. I'd say to delay as much as possible but at the same time not to delay for too long as to where you would have to endure til the very end. I'd make sure he understood that ALS is a non-recoverable disease ahead of time unless he already understands that. Otherwise, he would only get his hopes up. All of this, of course, is only my honest opinion and I don't know what it's like to be in your position.

Thank you for your thoughtful response.

Thank you for your thoughtful response.


Thank you for your thoughtful response.

Thank you for your thoughtful response.
[/QUOTE]

The only thing I can think to add that hasn't been said is have you considered getting him into therapy now? He knows you're dying, he sees you dying in front of him. Everything I know about teenagers from teaching for many years tells me that he is not capable of coping with that without help. Previously he had basketball and I'm sure that worked a great deal to channel out some frustration, focus on the sport, etc. but that's gone now.

As much as we tend to dislike therapy on this forum, I do think some kind of counseling now will help him come to terms with your imminent departure, so he atleast has a foundation of coping skills for when the event does happen. Whether it's by your own hand or naturally.

Yes he's been in therapy (although he's not a big fan of it, he's a very guarded & private young man) since I got sick and he understands (on whatever level a 17-yo can) the gravity of my situation with respect to my demise/deterioration. He watches me get worse every day, which is horrifying for him. Not having the basketball outlet is devastating in terms of his ability to deal/cope with it. There is no other sport or activity he is interested in/passionate about. He lives, eats, breathes basketball and the camaraderie with his teammates.

Thanks for your thoughtful response.


Thank you for your thoughtful response.

Yes he's been in therapy (although he's not a big fan of it, he's a very guarded & private young man) since I got sick and he understands (on whatever level a 17-yo can) the gravity of my situation with respect to my demise/deterioration. He watches me get worse every day, which is horrifying for him. Not having the basketball outlet is devastating in terms of his ability to deal/cope with it. There is no other sport or activity he is interested in/passionate about. He lives, eats, breathes basketball and the camaraderie with his teammates.

Have you spoken to his father about all of this? If the two of you can come up with a plan then at least he knows what to do after you're gone.
My first thought is you should stay but then if you miss your window of opportunity, your son is going to have to witness your 'natural' death and the memories of that will probably cloud any good things, whereas if you go now then he'll still have good things to remember you by (if that makes sense)
He's 17, perhaps he should be included in your discussions with your husband. At least he'll know you respected him enough to allow him to participate in the decisions about counselling and the like. Perhaps afterwards even talking to him about the option of you leaving the family earlier and why you're considering it?

I don't envy you one bit with the choices you have to make, I wish there was another way for you and I'm dreadfully sorry that your family has to go through this.

Neither my husband or my kids (or my other family or friends) have been supportive of the concept of me exiting early, so despite my requesting no autopsy, if one gets done and my true cause of death is revealed as suicide by N (and not the ALS) they will all be blindsided. I'm most afraid of my youngest feeling like I purposely chose to abandon him during the most difficult time of his life.

However, if I wait too much longer, I won't be able to hold/drink the N myself. Then I will be stuck in limbo while this insidious disease takes its sweet time killing me. And the thought of my son watching how bad it's going to get is equally as terrifying.

I am so sorry you're in this position on top of everything else. The first question you have to figure out is can you afford to hang on longer or will you miss your window to take control, so to speak?

If you have more time, then your main concern is your son. I'm not wise or insightful, and I don't know what it's like to have ALS, but I have raised a teenage son and dealt with a life threatening illness while doing it. All I can do is tell you what I did, if you're interested. If not, go ahead and skip the rest of this.

I'm a single mom. I was diagnosed with an aggressive form of breast cancer with lymph node involvement, and because of my young age and treatment options, none of my medical team thought it was going to go in our favor. My son was a few years younger than yours at the time, but he was aware of my situation. My instinct was to shelter him, but I didn't, although I didn't let him know how bad it actually looked. I'm still not sure if that was right or wrong....

Anyway, I was basically preparing to not be around for him anymore. I set up as strong a support network for him as I could. I focused on keeping his life as normal and stable as possible, because I thought that would help him cope in case I didn't make it.

I had to relocate for treatment, but I thought it would be best for him to stay behind so he would be in a familiar setting with all his friends and everyone he knew. I arranged for close family to take care of him. Things like that. Selfishly, I also left him to protect him from having to see me get sick and bald and probably die, but that has always haunted me. I'm not sure that didn't cause more anxiety for him in the end. Teenagers act tough, but they're still so fragile.

Probably the biggest thing I did was set him up with grief therapy. I wasn't gone yet, but I thought maybe it would give him tools and support after I was gone. I worked with his school counselors as well, and we had a good after school program for him. Basically, I got him all the positive adult support I could think of, so he always had someone to turn to or who had his back.

I wasn't detailed about it, but I kept him updated on my condition. Unknown is scary and stressful and reality sucks, but knowing even a little gradually helps it not be a massive shock you can't recover from, I believe.

I tried to build good memories for him to hold onto. If you can hang on for just that little thing, I think it would help him so much. I also started planning for the future a little. Like, I started to collect gifts and notes to him for future things. Made secret little voice messages, stuff like that. I got him presents to be given while I was here, too. I think it helped ground him a bit.

I think whatever you do and however you do it, the most important thing is to do your best to make sure your son knows how much you love him, and how proud you are of who he's becoming, and that none of this is his fault. It's teenage nature to self-blame, so counteract that any way you can think of.

I don't know if any of my experience will be helpful at all to you, but I really hope you can find something useful in there. I know you'll do the right thing, no matter what that is. Good luck.

Thank you for your thoughtful response. I've done/am doing many of the things you suggested.

 

[Morphinekiss]

I've thought about this all morning and my heart truly hurts for you. There is no easy answer. I just keep thinking if it was my parent, I wouldn't want to watch them suffer until the bitter end. I'd probably even help if it came down to something like an extra dose of morphine, etc. I know this doesn't help your decision at all.