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RIP Riley (1 Viewer)

I'm not usually a signs guy but both these things are 100% true. The day after my mom's death a cardinal was sitting in the tree in front of my house. Never saw it there before or since. Cardinals were my mother's favorite animal and she had pictures of them and ornaments of them all over the house.

Today my wife and I left the hospital and in the parking lot was a truck with the vanity plate Riley 04

 
Mr. Ham said:
I'd like to speak for everyone on a small point of order.  My wife felt obligated to write everyone who supported us thank you notes. She did, and it was a nice gesture, but an obligation that took months.  Please take this as a request not to bother for this motley collective!  Tell your wife especially that we overtly do not want this.  Take that time for your family.  
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Speak for yourself. 

Once Riley is back on her feet, anything less than a 13x9 pan of lasagna delivered  from Staten Island via an immigrant on a pedal bike is going to be essentially a declaration of war.  

 
AhrnCityPahnder said:
Speak for yourself. 

Once Riley is back on her feet, anything less than a 13x9 pan of lasagna delivered  from Staten Island via an immigrant on a pedal bike is going to be essentially a declaration of war.  
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I would settle for a picture of Riley in front of Trump tower. Or maybe coming down the escalator. 

 
shadyridr said:
I'm not usually a signs guy but both these things are 100% true. The day after my mom's death a cardinal was sitting in the tree in front of my house. Never saw it there before or since. Cardinals were my mother's favorite animal and she had pictures of them and ornaments of them all over the house.

Today my wife and I left the hospital and in the parking lot was a truck with the vanity plate Riley 04
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The Cardinals are playing an interleague series this week....against the Angels. 

 
Who ever just threw down 1055$ anonymously... you are ####### amazing!  All of you are actually ####### amazing. Every 5$ or 10$ is stupendous.

 
I'm sorry it took so long to fully respond to today's GoFundMe surprise. For one, I was simply blown away and needed time to gather my thoughts. Secondly, as has become the new norm, I was at the hospital all day and try and focus on Justin after picking him up from school at nights. I'll do my best to put how I feel into words but even this will not be enough to truly thank everyone.

I've been on FBG since the Ol' Yeller days. I believe I was 24 years old. I've always been very open about my life. Most of you know I am an Actuary from Staten Island, with a wife who I love more than anything despite her spending habits, I have an almost 7 year old son (Justin) and now a beautiful angel named Riley. You know I am into the bigger chicks, root for the Yankees, and have a ####ty dad. Sometimes my stories have backfired (I'll never live the HOF story down) but usually when I ask for advice the non-shtick responses have helped me grow up to be a better person. I often get great opinions, advice, and expertise on several subjects and you all have helped me in my personal life. I just want to say how much you all mean to me. I truly do feel ashamed for times when I snapped at people or got suspended. You all deserve better. This community amazes me every day but this past week you blew everything I knew about you all out of the water. When I saw the GoFundMe account I welled up with tears and told my wife (who also got teary eyed). She said it was the nicest thing a stranger has ever done for us. She told my FIL who also was in tears.

We are all extremely thankful. You have made us feel good in a time of great depression. Its not really the money but the fact that so many people are pulling for our beautiful daughter Riley. She has so many people pulling for her from all over the world. All our family and friends, people on Facebook, member of the Incontentia Pigmenti International Foundation (IPIF) support group, and members of this community. There are so many people rooting for her it almost feels like she can't fail. I truly hope to give everyone a happy ending.

Now about the generous donations. I really don't know what to say. My brother told me over 100 people donated and I figured it would be $1000 which would have been amazing. There are no words. Of course, I have no clue what I would do with the money at this time because there are so many unknowns still. If the worst thing imaginable happens the donations obviously would help me out there. Even if she  survives this she still has a long road ahead of her. While its true, our insurance should cover a lot of expenses, there is a deductible that I would need to meet when we switch over to my insurance or I can even use the money to pay for COBRA and keep us on our existing plan. This is enormous. We have also never been to Disney World. Anything is possible. One thing I DO know I would do with a large chunk of the money would be to donate to IPIF.

Tuesday was simply the worst day of my life. I truly felt like dying. I hope there aren't worst days than that. I don't think I'd ever be truly happy if something happened to my Riley but for the first time since hearing the news, I do think I would be able to survive. You've all made that possible. I love you all and will continue to keep you updated.

Vinny

#teamRiley

 
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If you guys go to Disney you could document it in the Disney thread which would be very cool.  Just saying, I would like to see that.  Get some sleep also.  Great job being there for your son.  

 
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Tears on the 16th Street Mall in Denver, Shady. Probably shouldn't have read that here and saved it for home.

All my best still heading your way.

#TeamRiley

 
Shady, most of us have done/said thing we are not proud of on the board and thats okay.  When the crap hits the fan there is a great crew here and just glad we can support you.

 
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FatUncleJerryBuss said:
Shady, most of us have done/said thing we are not proud of, and thats okay.  When the crap hits the fan there is a great crew here and just glad we can support you.
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This x1000

Things like this keep me coming to FBG on a daily basis, we all put our differences aside and come together.

Stay strong Shady

 
My daughter Hannah said a prayer for Riley tonight.

Hannah was born 5 weeks early and was 3 lbs. 9 ozs.  She was in NICU for 5 days and I thought that was stressful.  Nothing like what you are going through with Riley.  Today Hannah is almost 12 years old and for starting so small she has made up all that ground.  She's a little ball of fire and I know that Riley can get past this and show the world what she can do too.

#TeamRiley

 
shadyridr said:
I will give a Riley update. They have stopped her antiseizure meds. Her levels were too high which was causing her to be sleepy. Im still confused if she was in a coma or just sleepy due to high levels and maybe thats because doctors arent sure either. All i know is she opened her eyes today, we fed her (still through feeding tube) 55ml, and we held her for hours. She is a lot more active. I asked doctor if all these are signs of progress and he didnt disagree but he was hesitant to say anything more other than well see how she does without the phenobarbital. She is still on the steroids which imo was the key to her turnaround (and Justin wishing to Jesus). Im not a religious guy but if she turns things around i do think someone is out there. She is doing everything a baby should be doing on her own including eating, pooping, peeing, breathing, and even started little cries today. I really hope im not getting my hopes up here and i know she has a long tough road ahead of her but today was a good day.

Vinny
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I'll try not to get emotional but this was looking bleak so excuse me if I get a little emotional 

I know there's an army of folks here that want to take some of those punches for Riley, sounds like she is firing back  :boxing:

I know everyone here wants to help in any way they can, don't worry about responding with the right words. But the updates are very much appreciated. 

My heart goes out to you and your family Shades, one day at a time right now. Don't worry about next Tuesday, just live in the moment. 

 
So, so happy to hear today's good news.

Shady, if you'll indulge a piece of unsolicited advice, it's this: allow yourself to hope. It can be scary to hope, no doubt, but it is hope that fends off the darkness and sustains us. 

 
bigbottom said:
So, so happy to hear today's good news.

Shady, if you'll indulge a piece of unsolicited advice, it's this: allow yourself to hope. It can be scary to hope, no doubt, but it is hope that fends off the darkness and sustains us. 
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Sometimes I worry if I hope too much I'm just setting myself up for a huge downfall.

 
shadyridr said:
Sometimes I worry if I hope too much I'm just setting myself up for a huge downfall.
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I know. But hope is what will sustain you today, and tomorrow, and the next day.  And if the downfall comes one day despite all efforts, you will be no worse off having been able to sustain yourself between this day and that. You'll actually be better for it because the days that you have between now and then will be filled with hope and positivity, rather than resignation and despair.  Those days are going to mean the world to you and you will be glad to have made the most of them.  

She's going to make it Vinny. Hope. 

 
Hang in there, shady. Still praying for Riley, you, and your family. So glad we could help, even in a small way.

 
bigbottom said:
I know. But hope is what will sustain you today, and tomorrow, and the next day.  And if the downfall comes one day despite all efforts, you will be no worse off having been able to sustain yourself between this day and that. You'll actually be better for it because the days that you have between now and then will be filled with hope and positivity, rather than resignation and despair.  Those days are going to mean the world to you and you will be glad to have made the most of them.  

She's going to make it Vinny. Hope. 
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:goodposting:   :goodposting:   :goodposting:  

 
bigbottom said:
I know. But hope is what will sustain you today, and tomorrow, and the next day.  And if the downfall comes one day despite all efforts, you will be no worse off having been able to sustain yourself between this day and that. You'll actually be better for it because the days that you have between now and then will be filled with hope and positivity, rather than resignation and despair.  Those days are going to mean the world to you and you will be glad to have made the most of them.  

She's going to make it Vinny. Hope. 
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Beautiful

 
Got home not long ago from a few days in hospital. First thing, find latest and respond better to this thread. Am so very happy to hear she is doing better. I have a tough time with internet on my phone so I'm glad to be home now on my laptop to follow. I don't have the energy to sift through the whole thread, so can you link the gofundme page? I'd like to help. Sending lots of positive thoughts and prayers! X

 
CurlyNight said:
Got home not long ago from a few days in hospital. First thing, find latest and respond better to this thread. Am so very happy to hear she is doing better. I have a tough time with internet on my phone so I'm glad to be home now on my laptop to follow. I don't have the energy to sift through the whole thread, so can you link the gofundme page? I'd like to help. Sending lots of positive thoughts and prayers! X
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Hope you're doing ok. 

https://www.gofundme.com/23r99vpt

 
bigbottom said:
I know. But hope is what will sustain you today, and tomorrow, and the next day.  And if the downfall comes one day despite all efforts, you will be no worse off having been able to sustain yourself between this day and that. You'll actually be better for it because the days that you have between now and then will be filled with hope and positivity, rather than resignation and despair.  Those days are going to mean the world to you and you will be glad to have made the most of them.  

She's going to make it Vinny. Hope. 
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Quite honestly the best posting I've read in the FFA in some time (maybe ever), and not surprising considering the source. Perfectly said

 
shadyridr said:
Sometimes I worry if I hope too much I'm just setting myself up for a huge downfall.
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Hope is there no matter what.  

I feel like we have so much in common.  I had a daughter 3 months ago.  I have a son named Riley.  I have been to the other side of darkness - and emerged.

I have always had an uncommon bond with my Riley.  When he was born the doctor went from asking if I wanted to cut the cord to suddenly serious.  Riley came out purple.  The nurses took him to a table and worked on him for a good 90 seconds before he breathed.  I didn't either.  I had never contemplated that we could lose him, and therefore never realized how much he meant.  I have never been closer to anyone than I am him and it was forged in those moments.

I have also lost a child, and he is with me every day.  My love for him since has been tempered by God's kiln. It has a strength that can only be rendered beyond nature.

You are experiencing love in its rawest form, transformational love.  You'll never let that go, nor will those around you.  We're all so temporary and despite the self-importance we assign to ourselves, fleeting.

What we are all reminded of here is what matters, and exists outside of us.  Feeling it's there, trusting its there.  That's hope.

 
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Mr. Ham said:
Hope is there no matter what.  

I feel like we have so much in common.  I had a daughter 3 months ago.  I have a son named Riley.  I have been to the other side of darkness - and emerged.

I have always had an uncommon bond with my Riley.  When he was born the doctor went from asking if I wanted to cut the cord to suddenly serious.  Riley came out purple.  The nurses took him to a table and worked on him for a good 90 seconds before he breathed.  I didn't either.  I had never contemplated that we could lose him, and therefore never realized how much he meant.  I have never been closer to anyone than I am him and it was forged in those moments.

I have also lost a child, and he is with me every day.  My love for him since has been tempered by God's kiln. It has a strength that can only be rendered beyond nature.

You are experiencing love in its rawest form, transformational love.  You'll never let that go, nor will those around you.  We're all so temporary and despite the self-importance we assign to ourselves, fleeting.  

What we are all reminded of here is what matters, and exists outside of us and which connects us, and can never be lost.  And that's not a Hallmark card.  I've come to truly believe it, and hope is what exists at the center, whether we acknowledge it or not.

So there it is.  You're going to be okay no matter what.  All you have to do is have the faith and belief that you can find the bond to those you love.  It's timeless... 

Must may not always be exactly what we want, but hope is feeling the love is there regardless.
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Unreal. You guys who have been through some really tragic times are truly inspiring

 
bigbottom said:
I know. But hope is what will sustain you today, and tomorrow, and the next day.  And if the downfall comes one day despite all efforts, you will be no worse off having been able to sustain yourself between this day and that. You'll actually be better for it because the days that you have between now and then will be filled with hope and positivity, rather than resignation and despair.  Those days are going to mean the world to you and you will be glad to have made the most of them.  

She's going to make it Vinny. Hope. 
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This is some of the best advice I've read. 

 
Michael Brown said:
Unreal. You guys who have been through some really tragic times are truly inspiring
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I've been editing the post trying to hone in on what it is I'm even trying to say.  I think it's that the love is always there like a sun that shines on.  Even if the planet is facing away and it's pitch black, you have to trust that it's still there and you're destined to face it again.  

Even when it was pitch black for you, that sun was shining somewhere you can't see.  You don't have to understand or overthink it to take solace that it's true.

That sun is love and just as it sustains us, we fuel it.

 
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shadyridr said:
I will give a Riley update. They have stopped her antiseizure meds. Her levels were too high which was causing her to be sleepy. Im still confused if she was in a coma or just sleepy due to high levels and maybe thats because doctors arent sure either. All i know is she opened her eyes today, we fed her (still through feeding tube) 55ml, and we held her for hours. She is a lot more active. I asked doctor if all these are signs of progress and he didnt disagree but he was hesitant to say anything more other than well see how she does without the phenobarbital. She is still on the steroids which imo was the key to her turnaround (and Justin wishing to Jesus). Im not a religious guy but if she turns things around i do think someone is out there. She is doing everything a baby should be doing on her own including eating, pooping, peeing, breathing, and even started little cries today. I really hope im not getting my hopes up here and i know she has a long tough road ahead of her but today was a good day.

Vinny
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Damn I'm not an emotional guy at all but I got a little dusty from this update. 

Good to  hear Shady.

 
bigbottom said:
I know. But hope is what will sustain you today, and tomorrow, and the next day.  And if the downfall comes one day despite all efforts, you will be no worse off having been able to sustain yourself between this day and that. You'll actually be better for it because the days that you have between now and then will be filled with hope and positivity, rather than resignation and despair.  Those days are going to mean the world to you and you will be glad to have made the most of them.  

She's going to make it Vinny. Hope. 
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This may be the most powerful thing I have ever read. And to find it on a fantasy football website just adds to it. 

 
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