Saw Diana for the first time since hearing the news. Her condition has noticeably deteriorated. She's lost muscle on her hands and legs and has trouble walking. She was in good spirits, but I'm told I caught her on a good weekend. Naturally, there are days when she sinks into a deep depression. I also spent some time with her husband, Paul, getting to know him really for the first time. He is a wonderful man, and we're all honored to include him in our family, even more than before.
The wheelchair is tough to get used to, for all of us. This was a fitness instructor for years.
So the other day my wife and I were at a craft fair, and as is the case with these things, there are dozens and dozens of booths lining the path. My stepdaughter is one of those "gimme gimme gimme I wanna I wanna I wanna" types, so as soon as we walked in, I pretended to be interested in every single booth. "I wanna rescue greyhound, mommy! I wanna ice cream! I wanna..."
Well, I didn't get very far, because I was stunned back into reality by the third booth, a sale of wristbands and other knick-knacks to support the study and treatment of ALS. We bought a few wristbands and gathered some info on the foundation. We ended up giving one of the wristbands to my sister, who cried (as did we).
Looking for more info and opportunities to help this foundation. I'll keep you all posted.
raf..............just noticed this thread today...........it is a frightening diagnosis...........an emotional roller coaster.........i am absolutely with you and diana and your wonderful family in prayer...........there really is no single "right" behavior for any of you......you're all doing the right thing by pulling together in love and prayerful solidarity with your beloved sister........continue celebrating her life with her and each other........love to you, brother, and...............peace.
There's a lot to be said for a long, sweet good-bye. I lost my mother to a sudden and unexpected heart attack. Had talked to her on the telephone less than an hour before receiving the call that she was gone. I lost my father to pancreatic cancer. My sibilings and I had 5 months to "circle the wagons", love and support him and each other, and celebrate and grieve his life together.
The best advice I can give is to face the reality of her situation, prepare for the worst, and hope for the best. By putting all the cards on the table, and not tip toeing around the diagnosis, it opens up doors for honest and complete communication. Nothing is left unsaid and there are no regrets later "I wish we had talked about so and so."
To ignore the reality can be to put the pressure of "being the strong one" on her shoulders. For all to recognize it, and openly discuss it, is painful, but it allows each one to be the strong one for the others. You support me when I'm having trouble with it, and vice versa. All share in being the "strong one" for the moment as well as the "weak one" for the moment.
As we face our mortality, it is natural to survey the course of our life and reflect upon it. This brings up many wonderful memories of times shared, lessons learned, and the many things we are thankful for in each other. Reliving those times together brings a great deal of healing and closure. It puts the focus on counting our blessings, and helps us to celebrate even in a time of despair. It also allows us to grieve what we will miss together in the future. By mourning and grieving together, it takes the horrid sting out of the ultimate passing. It still hurts like hell, but the healing process is so much gentler and quicker. It's not time that heals a broken heart, but what our minds do during that time that heals our heart. By embracing it all now, celebrating and grieving together, it allows one to work through the grief process starting now. And it comforts the one leaving us that all will be okay after they have gone because they see us loving and supporting one another now.
You, your sister, and your entire family continue to be in my thoughts and prayers.
So yesterday I mustered up the strength to call the ALS association chapter in Florida. They're organizing a walkathon in April and I wanted to know how I can sign up and maybe even help organize. I was fine until the woman I was speaking to asked me what my personal connection to ALS was. She was so patient with me, because I couldn't answer. She asked again, and I told her I heard the question but I was having trouble answering it. The very words I was speaking couldn't get out of my mouth in more than a whisper. When I finally could speak, there were more tears than sounds.
She understood. I told her I was in a position to be quite a bit of help, and asked her to google my name rather than try to explain. She did, and then she promised to connect me to the local planning group. She also urged me to get Diana involved with the ALS chapter in New Jersey. I think she's already connected with them, but I'll check.
Anyway, the woman I spoke to, her name is Dileep. I'm sure mine was not the first tear-filled call she ever received. She then sent me a bunch of e-mails with tons of local info. I won't be Diana's caregiver for the most part, although I do expect I will need to go to New Jersey at some point with my wife to give Paul a bit of a break from all he's doing.
Someone told that to my wife yesterday. They said Diana will need help, but Paul will, too, and anything we can do to help ease his "burden" is going to be a help to both him and her. I never thought about that, and that leads me to think about all the help caregivers need. So that's a bit of today's journey: there is help for caregivers out there.
Paul didn't volunteer for this. Neither did any of us. So we'll have to be in it together. All of us (and there's an awful lot of us).
George, Suda, and Dooj, thank you all for your words of encouragement and support.
DWBH: Knowing that you're praying with us helps me much. Thank you.
Count me in on the prayers. And add my prayers for Paul, you and your wife. You all are not alone in this. I pray God to give all of you the strength and faith you will need.
Wish I had known y'all were in Orlando. I would have loved to see you.
I'm glad Diana has such a great family and all of you are in my prayers. If there is anything I can do to help on my end, please do not hesitate to contact me.
I will add Diana and Paul and your mom and Julie and you and Christine to my prayers.
I believe in miracles...don't stop declaring God's will for Diana.
Of course, God does not always get His will, but I think it still honors Him to declare it.
And....we know that if the Lord tarries, our loved ones will watch each of us fall asleep and then their loved ones will watch them do the same. And so..whether Diana has 1 month or 20 years, focus on the love. The love from the past, the love in the moment, and the love you will share forever when there is no ALS.
And Raf, don't forget your mother. I cannot imagine a greater pain than being unable to remove from our children the worst case scenario of life.
Laslty, will you do me a favor?
Will you please introduce me to your sister when we have our new bodies?
An impressive debut for the Greasespot Cafe. Many thanks to those who've already made their gifts. I hope as the day draws nearer, I can count on some more support.
I sent the link to Diana today, but I haven't heard back from her. When I do, I'll let you know.
A great weekend on the fundraising front, thanks to the Greasespot Cafe. I will have to increase my fundraising goal very soon to account for the success you guys made possible. Thank you all, again.
I'll be chatting this one up a lot more, as the walk itself is April 12. And on occasion I'll re-post the link in case anyone else wants to climb on board.
My mother calls her Diana. I've always called her Diana and introduced her as Diana. Everyone I know in my family has always called her Diana. So how am I supposed to know her name is actually Diane?
She informed me today, after seeing the walk page for the first time. I personally think this is hilarious. God bless family life, eh?
Since my Dad's name was George, I grew up using my middle name, Michael. Only my family and very old friends call me that anymore, so it's funny when my brother comes to visit and talks with my friends. He always calls me George, but there's a beat there where he has to catch himself!
I hope as time goes on that you keep having to raise your goal, Raf!
Diana ~ Diane
My family and hometown friends call me by one name and everyone else calls me Sonya. Usually the thick southern accent gives them away, but I know for sure it's someone from home when I hear my childhood name used.
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Raf
Saw Diana for the first time since hearing the news. Her condition has noticeably deteriorated. She's lost muscle on her hands and legs and has trouble walking. She was in good spirits, but I'm told I caught her on a good weekend. Naturally, there are days when she sinks into a deep depression. I also spent some time with her husband, Paul, getting to know him really for the first time. He is a wonderful man, and we're all honored to include him in our family, even more than before.
The wheelchair is tough to get used to, for all of us. This was a fitness instructor for years.
More later.
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doojable
My prayers are with you and your family.
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Raf
So the other day my wife and I were at a craft fair, and as is the case with these things, there are dozens and dozens of booths lining the path. My stepdaughter is one of those "gimme gimme gimme I wanna I wanna I wanna" types, so as soon as we walked in, I pretended to be interested in every single booth. "I wanna rescue greyhound, mommy! I wanna ice cream! I wanna..."
Well, I didn't get very far, because I was stunned back into reality by the third booth, a sale of wristbands and other knick-knacks to support the study and treatment of ALS. We bought a few wristbands and gathered some info on the foundation. We ended up giving one of the wristbands to my sister, who cried (as did we).
Looking for more info and opportunities to help this foundation. I'll keep you all posted.
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DontWorryBeHappy
raf..............just noticed this thread today...........it is a frightening diagnosis...........an emotional roller coaster.........i am absolutely with you and diana and your wonderful family in prayer...........there really is no single "right" behavior for any of you......you're all doing the right thing by pulling together in love and prayerful solidarity with your beloved sister........continue celebrating her life with her and each other........love to you, brother, and...............peace.
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Suda
((((((((((((((Raf))))))))))))))),
There's a lot to be said for a long, sweet good-bye. I lost my mother to a sudden and unexpected heart attack. Had talked to her on the telephone less than an hour before receiving the call that she was gone. I lost my father to pancreatic cancer. My sibilings and I had 5 months to "circle the wagons", love and support him and each other, and celebrate and grieve his life together.
The best advice I can give is to face the reality of her situation, prepare for the worst, and hope for the best. By putting all the cards on the table, and not tip toeing around the diagnosis, it opens up doors for honest and complete communication. Nothing is left unsaid and there are no regrets later "I wish we had talked about so and so."
To ignore the reality can be to put the pressure of "being the strong one" on her shoulders. For all to recognize it, and openly discuss it, is painful, but it allows each one to be the strong one for the others. You support me when I'm having trouble with it, and vice versa. All share in being the "strong one" for the moment as well as the "weak one" for the moment.
As we face our mortality, it is natural to survey the course of our life and reflect upon it. This brings up many wonderful memories of times shared, lessons learned, and the many things we are thankful for in each other. Reliving those times together brings a great deal of healing and closure. It puts the focus on counting our blessings, and helps us to celebrate even in a time of despair. It also allows us to grieve what we will miss together in the future. By mourning and grieving together, it takes the horrid sting out of the ultimate passing. It still hurts like hell, but the healing process is so much gentler and quicker. It's not time that heals a broken heart, but what our minds do during that time that heals our heart. By embracing it all now, celebrating and grieving together, it allows one to work through the grief process starting now. And it comforts the one leaving us that all will be okay after they have gone because they see us loving and supporting one another now.
You, your sister, and your entire family continue to be in my thoughts and prayers.
XOXOXO,
Suda
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GeorgeStGeorge
Well said, Suda! The Countess and I continue to pray for your sister and family, Raf.
George
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Raf
So yesterday I mustered up the strength to call the ALS association chapter in Florida. They're organizing a walkathon in April and I wanted to know how I can sign up and maybe even help organize. I was fine until the woman I was speaking to asked me what my personal connection to ALS was. She was so patient with me, because I couldn't answer. She asked again, and I told her I heard the question but I was having trouble answering it. The very words I was speaking couldn't get out of my mouth in more than a whisper. When I finally could speak, there were more tears than sounds.
She understood. I told her I was in a position to be quite a bit of help, and asked her to google my name rather than try to explain. She did, and then she promised to connect me to the local planning group. She also urged me to get Diana involved with the ALS chapter in New Jersey. I think she's already connected with them, but I'll check.
Anyway, the woman I spoke to, her name is Dileep. I'm sure mine was not the first tear-filled call she ever received. She then sent me a bunch of e-mails with tons of local info. I won't be Diana's caregiver for the most part, although I do expect I will need to go to New Jersey at some point with my wife to give Paul a bit of a break from all he's doing.
Someone told that to my wife yesterday. They said Diana will need help, but Paul will, too, and anything we can do to help ease his "burden" is going to be a help to both him and her. I never thought about that, and that leads me to think about all the help caregivers need. So that's a bit of today's journey: there is help for caregivers out there.
Paul didn't volunteer for this. Neither did any of us. So we'll have to be in it together. All of us (and there's an awful lot of us).
George, Suda, and Dooj, thank you all for your words of encouragement and support.
DWBH: Knowing that you're praying with us helps me much. Thank you.
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Watered Garden
Raf,
Count me in on the prayers. And add my prayers for Paul, you and your wife. You all are not alone in this. I pray God to give all of you the strength and faith you will need.
WG
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doojable
Raf - it may not seem like much or even enough, but let us here at GSC be strong for you whenever you need us. You've certainly been there for many.
It's good you have your wife and girls - hug them every night!
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Belle
(((((Raf))))))
Wish I had known y'all were in Orlando. I would have loved to see you.
I'm glad Diana has such a great family and all of you are in my prayers. If there is anything I can do to help on my end, please do not hesitate to contact me.
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thankfulone2
Raf,
Wow.
God bless you.
I will add Diana and Paul and your mom and Julie and you and Christine to my prayers.
I believe in miracles...don't stop declaring God's will for Diana.
Of course, God does not always get His will, but I think it still honors Him to declare it.
And....we know that if the Lord tarries, our loved ones will watch each of us fall asleep and then their loved ones will watch them do the same. And so..whether Diana has 1 month or 20 years, focus on the love. The love from the past, the love in the moment, and the love you will share forever when there is no ALS.
And Raf, don't forget your mother. I cannot imagine a greater pain than being unable to remove from our children the worst case scenario of life.
Laslty, will you do me a favor?
Will you please introduce me to your sister when we have our new bodies?
xoxox
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Raf
I was going to write an intro to this, but I think it's better if you just watch...
Augie’s quest to combat ALS
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act2
Raf,
You and your famiy remain in my prayers. May God bless you and yours during this trying time.
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Raf
Well, folks, this is the part where I start asking for your help and your generosity.
http://web.alsa.org/goto/Rafael.Olmeda
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Raf
An impressive debut for the Greasespot Cafe. Many thanks to those who've already made their gifts. I hope as the day draws nearer, I can count on some more support.
I sent the link to Diana today, but I haven't heard back from her. When I do, I'll let you know.
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Suda
Raf,
Thank you for giving us the opportunity to support you and Diana and all ALS patients in this way. Your kindness is appreciated.
Suda
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Raf
Greasespotters continue coming through. I'm truly touched. You guys are going to move me to tears!
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Shellon
:)
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Raf
Yesterday I woke up and I was 20% of the way to my (modest) fundraising goal.
Today I woke up and I was 80% of the way there. Go Greasespot!
Seriously, thank you all.
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Raf
A great weekend on the fundraising front, thanks to the Greasespot Cafe. I will have to increase my fundraising goal very soon to account for the success you guys made possible. Thank you all, again.
I'll be chatting this one up a lot more, as the walk itself is April 12. And on occasion I'll re-post the link in case anyone else wants to climb on board.
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Raf
You would think I'd know my own sister's name!
My mother calls her Diana. I've always called her Diana and introduced her as Diana. Everyone I know in my family has always called her Diana. So how am I supposed to know her name is actually Diane?
She informed me today, after seeing the walk page for the first time. I personally think this is hilarious. God bless family life, eh?
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GeorgeStGeorge
Since my Dad's name was George, I grew up using my middle name, Michael. Only my family and very old friends call me that anymore, so it's funny when my brother comes to visit and talks with my friends. He always calls me George, but there's a beat there where he has to catch himself!
:)
George
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Belle
I hope as time goes on that you keep having to raise your goal, Raf!
My family and hometown friends call me by one name and everyone else calls me Sonya. Usually the thick southern accent gives them away, but I know for sure it's someone from home when I hear my childhood name used.
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Raf
Happy to report that what's-her-name will be joining us in April for the walk!
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