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difficult relationship w/DS, now he has degenerative illness

Started by fantine, January 15, 2014, 11:43:49 AM

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fantine

Ladies:

Looking for much needed support. Just txted and called my 19-y-o son DS last night on a whim. He was surprisingly glad to hear from me, then I discovered why. He apparently has a degenerative illness that seems to be related to Lou Gehrig's (ie, atrophy in the limbs) This will shorten his life and has already caused him to give up some physical activities he loves.

Of course, I am inconsolable and terribly confused.  :'(
Fantine

DixieDarling

Aww, honey I'm so sorry. Hopefully things will continue to improve with your son so you can be with him if he needs you. Sending Hope,Hugs & a Prayer your way.

fantine

Thank you. I"m stunned right now . .. . .  I don't even know how to begin processing this . . .. . . He hasn't lived with me since 2010, and that in itself has been difficult enough, but now with this, and realizing that it very well could impact his quality of life ---- it's just an awful lot to work through.

Pen

Fantine, my thoughts are with you and your DS. (((hugs)))
Respect ... is appreciation of the separateness of the other person, of the ways in which he or she is unique.
-- Annie Gottlieb

fantine

Thanks, Pen. I'm truly lost inside my own head right now. We will know more next Wed after his drs appt. Till then, I'm trying to process this.  :(

Cranky Pants

Fantine, I believe in the power of prayer so I'll keep you in my prayers and hope that next week you'll get some more specific news that will be positive.

Hugs,
CP

fantine

Thanks, CP.

Have you ever wondered --- "What next?" or "Why?" Both of these questions are going in and out of my head at warp speed.

And the worst of it is, I live in a part of the country that is known for medical excellence. However, I know that DS and DH would never agree for him to come here for any help he needs. Doing so would be proof (in their minds) that I can actually contribute something to DS's well-being and am actually a worthy member of society. And we sure can't let me get *that* notion in my head! --snark!--   >:(

Cranky Pants

Fantine, I think it's best to stay away from questions like "What if", Why, What's Next?".....they will only serve to send your anxiety levels into warp speed, and that will distract you from dealing with the "here and now".

Don't worry about what they would/might think of you, should, would could or who knows what.

Serious illness has a way of cutting through the day to day squabbling and pointing out where the big priorities are and this might serve as a starting point for a better set of circumstance with your son and DIL.

Your son was happy to hear from you, that's good news.

When I'm going through a difficult spot I try to focus on one day at a time, and if I get bogged down in worry or anxiety I ask myself "Is this a productive thought?" if it's not, I banish it, put the brakes on it as best I can.

Get as much exercise as you can, get those endorphins pumping into your system to help your brain deal with the anxiety, and let's not forget that many times there are false positives, wrong diagnoses and all kinds of other things that can send us into high level anxiety where illness is concerned and later on someone says "Oh, we made a mistake".

Hugs,
CP


fantine

CP, your thoughts were like a dozen white roses delivered to my door. Thanks so much for your positivity. I truly don't know where to turn now, but your comments have helped me in my attempt to regain some sort of balance.

herbalescapes

There's probably a support group for families of individuals with your son's condition.  Whether it's local or online, you can probably find some very good, specific support and information there.  Good luck.

freespirit

When a family member becomes ill; the first impulse is to be there for him or her.  It's understandable that you feel this way, fantine.  But it could also be that your son needs to stand on his own two feet as long as he can, without anyone's help. It may be a pride thing.

I don't know anything about this illness. Hopefully your son won't need you in the long run. But if he should; it is most definitely a comfort for him to know that he can always turn to you.

Sometimes that is the most you can give;   - grant his independence, but at the same time, be his pillar.
The greatest thing in the world is to know how to belong to oneself.
            -- Michel de Montaigne