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RIP Riley (3 Viewers)

IMPORTANT UPDATE  -  The Protocols are in the process of being updated with one more specialist - (cardiologist for Pulmonary Hypertension screening which can also be an IP affect) - This will be completed with the suggestions of experts in their field we hope to have the full description of their suggestion available for official release on the Protocols with 2016 years end. Science is always changing and new things discovered so YES as time passes IP Protocols have been and will be updated accordingly.
 
@Koya my wife and I were talking and just realized besides us two and doctors and nurses, you were the last person to see Riley when she was awake.
It was while I was with you that I realized how much joy Riley brought to this world.  Watching you and your wife and her just mangin' on that bottle.  And while we all her obviously look at this through your eyes, having met your wife - she was so totally sweet and gracious and (appeared) as together as could be imagined under the difficult circumstances.  What an amazing, strong woman - who deserves someone as caring and thoughtful as you. 

 
Heart broken. Crying. No words. 

Reach out to your local Compassionate Friends group. It is the only people that really do know what you are going through. I know it is the only other thing other than the other kids that kept my mom going when we lost my sister. 

www.compassionatefriends.org

 
Heart broken. Crying. No words. 

Reach out to your local Compassionate Friends group. It is the only people that really do know what you are going through. I know it is the only other thing other than the other kids that kept my mom going when we lost my sister. 

www.compassionatefriends.org

 
Heart broken. Crying. No words. 

Reach out to your local Compassionate Friends group. It is the only people that really do know what you are going through. I know it is the only other thing other than the other kids that kept my mom going when we lost my sister. 

www.compassionatefriends.org
Someone else mentioned them and there is a chapter in SI we plan on going to.

 
Here is the eulogy:

For those of you who may not know me, I am XXXXXXs cousin XXXXX. XXXXXXX has given me the honor to eulogize his beautiful daughter Riley through his words.

 Most of you know Riley’s story by now. Riley was born with a rare genetic condition called IP that can range from having mild to very severe complications. Unfortunately, our Riley had some very serious complications. On day 4 of her life, she suffered from seizures and strokes. She was given a poor prognosis for survival but she did survive. She was in the NICU for 7 weeks recovering and the day she was discharged was one of the happiest days of Riley’s family’s lives. She spent 8 weeks at home and it was the best weeks of mom, dad, and big brother, Justin’s lives. They knew there would be several challenges ahead but they also knew they could overcome them together as a family providing all the love and strength Riley would need to beat the odds. Unfortunately, hiding inside Riley was an unknown, even more rare complication of IP called pulmonary hypertension that proved to be too much for one little girl to handle.

While Riley was only with us a little over 3 months, she inspired thousands across the world. From a bunch of anonymous fantasy football geeks on a message board who coined the phrase #TeamRiley to hundreds of moms on an IP support group who’s daughters also battled the same rare condition that Riley fought. Everyone was rooting for Riley. Riley went by many nicknames since she was born. Everybody had their favorite pet name for her from Ri-Ri to Smushy to Squishy to RileyBear to Supergirl. They were all cute names for her but our favorite nickname of all, the one that embodied her true spirit, was Riley the Warrior. She was a true warrior and fighter in every sense of the word. There are not many people that could go through the amount of procedures she went through looking more and more beautiful after each one.

Despite being with us a short time, we all loved our beautiful Riley in our own special way. Riley was the little girl her mommy always wanted. Her mom and dad were shocked when she was born because of all her hair and eventually that hair started turning red! She was a spitting image of mommy and while mommy only got to dress her up in all her little outfits for 8 weeks we can all take solace in knowing how Riley would have looked like when she grew up. One just needs to look at her mother.

To dad, Riley was his little princess he would always protect. He loved holding her little body in his arms and rocking her and he loved stroking her beautiful soft hair. Riley taught daddy how to be compassionate and tore away at his rough exterior to open up his heart to others. She changed him as a human being.

To Justin, he was very happy to FINALLY become a big brother! He waited almost 7 years to become one and he adored her so much. He always begged to hold her, feed her, and was always eager to wake her up to eat her bottle and help with all her exercises. He was, and still is, the most amazing big brother his parents could ever imagine having and he would have protected her for his whole life. Justin’s mom and dad are VERY proud of the young man Justin has become. Riley had numerous developmental delays, one being tracking. However, EVERY time Justin spoke, Riley stared right into his big blue eyes and listened. They had a bond like none other.

To the XXXXXXXXs, Riley represented hope during a very bleak time. Riley’s nanny XXXXXX was passing away from cancer and she represented the strength we needed when Riley suffered her stroke. After XXXXXXX passed, we all looked at Riley as the hope to get us through those dark times. She survived and she came home shortly after and she was now displaying the same strength to all of us to get through XXXXXXX’s passing.

Riley’s passing will not be for nothing. Thanks to the great doctors that took care of Riley and the IP Foundation, they are currently in the process of updating the protocols to include screenings for Pulmonary Hypertension in all IP babies. We know these new protocols will not bring Riley back but we’d like to think if they save even one baby’s life, Riley will be smiling from up above.

In closing, Riley the Warrior, was loved by and inspired more people in her short 3 months on Earth than most people do in their entire lifetime and we will forever be proud of her for how she fought and battled.  It is not fair when a child passes at such a young age. People often say heaven got a new angel and that may be true but it is also ok to be selfish and want that angel for ourselves to be with us here. That is true about Riley. We all wanted her with us here. We may never understand fully why she was taken away from us at a very early age but we know why she was here. When Riley suffered through her first health crisis, Riley’s mom and dad found inspiration in a song called “Don’t Let Me Down.” Some of the lyrics of that song include the following verse:

[SIZE=12pt]Crashing, hit a wall
Right now I need a miracle
Hurry up now, I need a miracle
Stranded, reaching out
I call your name but you're not around
I say your name but you're not around[/SIZE]


[SIZE=12pt]I need you, I need you, I need you right now
Yeah, I need you right now
So don't let me, don't let me, don't let me down[/SIZE]


Riley was all of our miracles. She may be gone but she did not let us down. She was here to inspire us all to become better people. She was here to teach us again how to love one another. She was her to teach us how to fight and never lose hope. She was here to make Justin an amazing young man. And she was here to hopefully one day, save other babies. She was a true gift. Riley the Warrior, we will forever have holes in our hearts without you but we will never forget you.

 
:cry: :(

Thank you for sharing that, shady. I wish you and your inspiring family nothing but the best in the coming gays and future.

 
So, so very sorry, Shady.  You showed unbelievable character and love.  All the life is gone, and it'll never be fair, and the finality of it is unfathomable.  But...  She will never be far.  Thoughts and prayers to you and your family.  May you all find peace.  

Edit:  Eulogy is beautiful.  

 
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Beautiful tribute to Riley.  I had difficulty reading it.  God bless whomever has to deliver that eulogy.  I would never be able to do it.  Continued thoughts and prayers to you and your family.

 
People keep saying I'm strong but I really don't feel it. I'm so very depressed I haven't left the house since Wednesday. I don't have the heart to face people. Don't want to start doing normal things. My wife on the other hand went to the mall to buy me a shirt for the memorial and took Justin to the park. Her strength is unbelievable. I can't even walk around the block to buy grated cheese. She wants to goto her sisters tomorrow for dinner and I don't want to. She's not pushing me yet but I'm worried she will soon and I'm just not ready. I keep replaying all the events that happened in the last week over and over in my mind. Anybody know what that's called?

 
I just looked it up. It's called rumination and I'm guilty of it right now. I'm in a vicious cycle. Keep replaying conversations we had before we knew she had ph. I wish I knew.

 
People keep saying I'm strong but I really don't feel it. I'm so very depressed I haven't left the house since Wednesday. I don't have the heart to face people. Don't want to start doing normal things. My wife on the other hand went to the mall to buy me a shirt for the memorial and took Justin to the park. Her strength is unbelievable. I can't even walk around the block to buy grated cheese. She wants to goto her sisters tomorrow for dinner and I don't want to. She's not pushing me yet but I'm worried she will soon and I'm just not ready. I keep replaying all the events that happened in the last week over and over in my mind. Anybody know what that's called?
I can relate to how you feel.  It's been 9 weeks since my wife passed.  Still don't have the desire to do much.  I tried to project strength for the benefit of my son throughout our ordeal.  Internally I felt like a fraud because I didn't feel very strong.  I think it will get a little less difficult every day.  I can't say it's easy because it's not.  I feel as though I'm still just going through the motions because I have to, not because I want to.  Hang in there ifriend.  It's still very fresh and immensely painful.  Eventually I'm sure it will pass.  Remember, you still have a young son who needs his father fully engaged in his life.  Thoughts and prayers Shady.

 
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People keep saying I'm strong but I really don't feel it. I'm so very depressed I haven't left the house since Wednesday. I don't have the heart to face people. Don't want to start doing normal things. My wife on the other hand went to the mall to buy me a shirt for the memorial and took Justin to the park. Her strength is unbelievable. I can't even walk around the block to buy grated cheese. She wants to goto her sisters tomorrow for dinner and I don't want to. She's not pushing me yet but I'm worried she will soon and I'm just not ready. I keep replaying all the events that happened in the last week over and over in my mind. Anybody know what that's called?


Be strong for your wife's sake.   I'm positive she is taking this worse than you or your son.  I can't relate... Not many could - but do your best to make things as easy possible for them.

 
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People keep saying I'm strong but I really don't feel it. I'm so very depressed I haven't left the house since Wednesday. I don't have the heart to face people. Don't want to start doing normal things. My wife on the other hand went to the mall to buy me a shirt for the memorial and took Justin to the park. Her strength is unbelievable. I can't even walk around the block to buy grated cheese. She wants to goto her sisters tomorrow for dinner and I don't want to. She's not pushing me yet but I'm worried she will soon and I'm just not ready. I keep replaying all the events that happened in the last week over and over in my mind. Anybody know what that's called?
normal grieving. Take as much time as you need. Everyone does it at a different pace. 

 
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My life now will be so easy with only a seven year old as compared to what it would have been with two children, one being a special needs child, going to tons of doctors, requiring possible breathing support. And I would trade the former for the latter right now if i could.

 
Every once in a while the stars gift us with an anchor to set us all straight in our minds, and in our hearts. Riley is our Rock.

 
People keep saying I'm strong but I really don't feel it. I'm so very depressed I haven't left the house since Wednesday. I don't have the heart to face people. Don't want to start doing normal things. My wife on the other hand went to the mall to buy me a shirt for the memorial and took Justin to the park. Her strength is unbelievable. I can't even walk around the block to buy grated cheese. She wants to goto her sisters tomorrow for dinner and I don't want to. She's not pushing me yet but I'm worried she will soon and I'm just not ready. I keep replaying all the events that happened in the last week over and over in my mind. Anybody know what that's called?
Perfectly normal feelings. Everybody grieves at their own pace. You'll get back to "normal" in due time. It may be weeks. It may be months. It may be years. But slowly each day will get better. Hang in there.

 
People keep saying I'm strong but I really don't feel it. I'm so very depressed I haven't left the house since Wednesday. I don't have the heart to face people. Don't want to start doing normal things. My wife on the other hand went to the mall to buy me a shirt for the memorial and took Justin to the park. Her strength is unbelievable. I can't even walk around the block to buy grated cheese. She wants to goto her sisters tomorrow for dinner and I don't want to. She's not pushing me yet but I'm worried she will soon and I'm just not ready. I keep replaying all the events that happened in the last week over and over in my mind. Anybody know what that's called?
Grief.  It was crippling for me for some months, but it'll fade.  Shady, in the end you have much to be sad about but little if anything you should regret.

I had a really hard time getting back to life after my Connor passed.  Work a hour...  Walk two.

What eventually changed, and sometime maybe I'll tell you the story over a beer (after a hug) is when I gave myself permission to be broken.  Long story short, I stopped pretending and told a friend essentially that I wish my internal injuries could be understood externally by all.  If I were in a full body cast, people wouldn't question or have to ask.  The mere recognition that that was what was true gave me a sense of my own permission to just be broken--and that alone began the healing for me.  

You are broken and that is okay.

 
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Thank you for sharing that eulogy with us Shady.  And thank you so much for sharing Riley with us.  Both with such immeasurable beauty.

 
Damn. I hadn't been in here for a week or so and just saw the thread title had changed. Shady, I'm so sorry for your loss of Riley.

I lost my little boy Raef last year, who died in his sleep. My little bro lost his twin girls a few months later soon after they were born prematurely. The grief was overwhelming for what seemed like forever. But you have to keep on keeping on. Somehow. Your family needs you to be strong.

PM me if you want to chat. We're here for you. You'll be in my prayers.

 
Shady, if you haven't already, you may want to look into grief counselling for all three of you. Also, given where you live, there has to be a bazillion support groups for people going through the same thing you are. You're not alone.

 
Shady...man...my heart broke and tears flow for Riley and you and your family.  Nothing any of us say can remove the stunning grief you feel.  Only time will heal that wound, and never completely.  Throw yourself into the embrace of your remarkable wife.  Love your son Justin with a double dose of intensity.  Hang in there man.  Be strong for Justin.  Life is horrible sometimes.  At those moments, only love can help.  Surround yourself with those you love and who love you back.  So so sad.  I don't really know you, but I send you love, love for a fellow human being to one who is hurting!

 
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So sorry to have read this.....

My condolences to you and your family, this has been a thread of some much hope.  Peace and prayers to you and your family during this difficult time. 

 

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