Our little newborn, little River Rose, may have a medical condition that could range from treatable with daily inconveniences to treatable with years and years of special care...or if it's something with an eventual expiration date. Carnitine Uptake Disorder. A genetic condition at the cellular level. We won't know until Monday at the earliest what we're looking at.
Zo tell me, Mizztuh Awkvuhmahn...'ow duz zat make you feee-uhl?
I would give my life in a second to save hers. I hated God again for attacking my little angel with such an insidious 1-in-100,000 condition. I wanted to rip off Jesus' crown of thorns and rub Drano in the wounds. I wanted to tie all of Vishnu's arms behind her back and shove her face-first into a cesspool. I wanted to rage at everything I have no control over.
So I went to a meeting. I talked. I listened. The last promise stuck in my head. "God will do for us what we cannot do for ourselves." In this case...bear the fear, the sorrow, the anxiety and the pain so that I can try to do the same for my wife and other children. As much as I want the sweet, warm, gossamer oblivion of a drunk...I know that it would bring only more sorrow.
Yeah, I used this board to whine and bitch again. Thanks.
I'm so sorry you are going through this. I'm only starting to attempt prayer for the first time in my life, but I'll certainly add you and your lovely daughter to mine. Keep us updated and just give her lots of love. I really believe it's healing.
(((((Hold on there AM))))) Let's agree; "Fear Sucks" better to know what it feels like, sounds like, smells like and taste likes without a drink than after one. "This too will pass" is a good faith slogan. Its always true.
Exactly, Jerry...fear sucks. So, best to drag it out into the light and let it fry...even if it bites the sh*t out of me for my troubles. Fear of...a child with health challenges? People do it every day. Fear of...giving up my career to be a stay-at-home care-giver and home-schooler? Prairie mothers did it. Fear of...her dying. We wouldn't be the first family to survive that. Fear of...fear of failing to live up to the challenges ahead. Fear of my own weakness. We learn through AA that strength is in yielding while standing gound; like bulrushes in floodwaters. They survive, while the rigid trees on the shore are undermined by the current and fall.
I forgot the best quote from the Art of War; in serenity and firmness one will not be destroyed by events.
God will do for me what i can't do for myself; give me serenity to accept the things I cannot change and the courage to change the things that i can.
Oh what a bastard turn of events. But just yet you don't really know what level of medical crisis this is, so this would be a good time to stay in the day, relish every last little glimpse of joy that River brings you and come back here often to unburden your heart.
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It's not having what you want, it's wanting what you got. BB
My deepest of sympathies for this Bastard turn of events, as Bill wrote...... and Prayers for you Strength, and Courage while you walk, with you family through this....
Like the reed that bends, that will not break, just what you wrote to me.....i see you as that reed......
One day at a time, one hour at a time, and one second at a time, and one breath at a time.....
((((((((((((((((((love to you and your family))))))))))))))))))))
Sorry to hear that Rob. Keep the faith (or go get some), this could right itself or be a misdiagnosis, in other words it's too soon to tell. In any event, don't curse your HP if you expect to get some help here bro. I know that you're venting and I might be too if I was in your shoes, but saying easy does it.
My only brother was born with autism and mentally challenged, IQ somewhere in the low 50's. It's ranged from tough on our family to nearly impossible. Parents divorced over it, Mom had 2 nervous breakdowns both requiring stays in a mental institution while Dad was out at sea. Brother and I got shipped to two different grandmothers and ages 2 and 4. I'm digressing here, but I had a lot of anger and hate about it for a few decades, especially when my father turned my teenage brother over to a state mental ward to be locked up with criminally insane people who subsequently sexually abused my brother for years. I had fantasies about getting myself locked up in the same ward so that I could kill them all, even if it meant the end of my freedom. In the end, the anger and hate only made me drink and drug more, which fed the anger and the hate.
The only relief that I got was to contemplate reincarnation, along with the thought that my brother could have lived many other good lives and may have a few more to go. And that this life might have been a test and learning experience. He sure has taught me a lot.
Aquaman wrote:As much as I want the sweet, warm, gossamer oblivion of a drunk...I know that it would bring only more sorrow.
Sweet oblivion? You already know it isn't a TRUTH, or you would have gotten drunk and not come here for support. I believe in you, Rob. And you believe in yourself too. You do. And you need to.
Your mind is, in the face of this crisis and in your current state of just going on adrenaline from day to day (I know it well) which is what happens when we are in shock- your mind is naturally and effortlessly configuring intricate lies and deceptions about what the TRUTHS of the moment really are, and what they are not. The truths about life itself become seemingly false, and the lies about things to come (which no one knows but God) become present day "truths". This goes beyond alcoholism. It is aprt of a human condition called FEAR. It is a part of another human condition called SHOCK. And it is a part of another human condition that all of us possess, called HOPE- and you have it, because as a human with another condition called alcoholism, you are here, and sober.
This is no longer about what are YOU going to do, or what are WE going to do (as a couple or a family), but about "What is God going to do?" And that condition you have called HOPE is goiong to facilitate littel miracles that will sustain you and keep you, and somehow, enrich your life and the lives of your wife and children. Some way, only God knows how, but some way this will happen. No false Hope here, just teh knowledge that God, a loving God, an all powerful God, is in control and is about to perform some miracles, if you release expectations and start watching vbery closely what he will do in your lives. Just wait, my friend. Oblivion robs us of this spiritual phenomenon as humans. Don't let oblivion entice you and take you away.
Love is on the way, and the kind that you can really SEE and FEEL.
With deep prayers and meditation focused toward your little one and your family and you, Joni
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~Your Higher Power has not given you a longing to do that which you have no ability to do.
However, if it helps, one of my son's friends has CTD. He's now 19 years old, fit healthy handsome. Controlled CTD through diet, though it has been hard work for his parents. The young man ran a 10k race when he was 17 and beat my son by minutes. They same young man is part of my son's group of friends, who do all the usual teenage things, like nursing a pint of beer for an hour, going to college, going to concerts and some of the not so typical teenage things like walking 15 miles for pleasure, rock climbing outdoor sports that sort of thing.
I'm sure that you'll get the best advice going, this might be life changing but need not be life threatening.
Good luck buddy.
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It's not having what you want, it's wanting what you got. BB
Hey AM, I am really sorry to hear about your daughter. The hardest part is waiting for an answer. It is our human condition for us to curse our HP in bad times. You want someone to blame this hard time on. Your HP has been cursed before and has forgiven before. I will spend some time today in prayer with my HP (maybe we have the same one) praying for your family. When its your child involved, its hard to hear people giving advice. You want to hear one thing, (so do we all by the way) and that is that your child is OK. Like Bill and SPD said above, lets wait. While waiting, I would pray. Could you imagine trying to deal with this effectively drunk? Would your being a drunk help this child? The absolute best thing you should do right now for this child is thank your HP for showing you sobriety before this child was born. I think I know your character from your excellent and deeply moving posts on this board. I am sure by now you are probably past the ""venting" stage and it sounds like you are in the "formulate a plan" stage. Hey Bill, do you have the email address of the parents of your kids friend? Could you get them in touch with AM? Rob, have you looked for a Carnitine Uptake Disorder forum online? Please keep us posted my friend. Prayers............ Tom
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"You're in the right place. That's the door right there. Turn around."
Hey Rob, Sorry, I couldn't find a CUD forum at first look. I did get a little education on the problem. I am surprised there is not a network for parents at first glance on a google search. Can anyone smarter with the computer find an actual forum or contact portal for our friend to talk to others dealing with CUD to ease Rob's mind?
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"You're in the right place. That's the door right there. Turn around."
hi I am so sorry to hear about this also. I can slightly relate my husband was admitted urgently to hospital this past week and when they were doing the tests and stuff and we didnt know what was going on it was very scary. We both thought the worst , i mean the worst and i basically lost the plot about it all. (he is OK at home now thankfully, it wasnt the worst even though my brain could see NO other option at the time but it to be the worst)At the time it was happening my sponsor was on the phone to me telling me to calm the fk down, my head was spinning projecting the worse etc.
I felt very angry to God and I related to what you were saying about that anger. basically right now i am ot sure if I beleive in God. my HP is now the rooms, other people such as my sponsor and meetings, and my spirit guides and angels. I dont get God I dont get how peopels health turns bad, i hate the powerless of it. I hope I get my faith back.
My sponsor was saying well I just have to accept it that is how life is. I was thinking I dont want to accept i damn well hate it all.
I know drinking will only make things worse. Praying i have experienced does help. My HP does not have to be God all the time, it can be anything that I beleive will help me stay sober and OK.
You know what? My husband was lucky to get treatment when he did, as he was seeing his GP that day for something unrelated, and because of that he got admitted to hospital for this other thing. If he hadnt of been at the GP for that unrelated reason he could have been a million times worse. I guess that could be HP helping huh. I am not the best person to say good things about HP sorry. Am stuck in a lost place right now with the HP stuff but i know i can use other things as an HP sometimes and i do not have to drink. If i dont drink things get better. If i did drink it would jsut be hell.
tc and I will try pray for you also. I hope you get some peace i really am thinking of you and hope you get some peace.
edit: I think what previous poster said about shock and fear is very true. It messes with the mind big time. Also i remeber something i heard the other day at a meeting. Often I see in retrospect how things in the past have worked out ok, its when i am stuck in the middle of the fearful situation that is so hard impossible for me to beleive it will be OK.
-- Edited by slugcat on Sunday 25th of April 2010 08:02:47 AM
The key words there are "may have". With tiny babies, there are lots of things that might look like a "may have" that turn to be "doesn't have's". Just turn it over to your Higher Power and don't live what hasn't happened yet. Remember that this tiny being has just recently had to start learning to live without Mom's umbilical input and sometimes there are irregularities at first that look like they might be something dire but don't turn out to be at all.
I'll be praying for you and your family. One thing I've learned is that even though we don't understand why God allows certain things to happen, He never makes mistakes. He never gives us more than we can handle, either. Keep yourself in the moment and don't cross bridges you haven't come to yet.
As for getting drunk at it? Well, if your daughter does have obstacles like that to overcome, you'd really be wimping out on her if you lost yourself in booze. She needs a strong, sober Daddy.
Still we wait. Thanks to you all...and my HP (It's big enough to take a tantrum and patiently wait for me to wipe my snotty nose and hug It's legs) we're waiting together.
Still Sober, Still smoke-free and still intouch with my God.
Hell of an attitude AM...Wait with God...Geeez I love that picture and who else would I rather wait with sitting in the palms of God's hands. That one works I'm evidence of that. I weather vane to Ellens response. It is my experience also. I won't share my experience with a child almost terminal because the events go past one only and each of them taught me that HP was there and always has been. Besides I won't add old unfulfilled fears to what you are holding on to now. You don't need added weight.
I will never discount the gift of humility the rewards are too great and I will never forget the morning I woke up after turning my life and will over completely and being absolutely fearless. I knew then what MLK felt when he said..."Free at last, Free at last; Thank God I'm free at last."
You don't have any power except the power to turn it over and a drink will never be justified by your love of River. Stay the course. In support.
-- Edited by Jerry F on Sunday 25th of April 2010 11:21:52 PM
