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Tough read, but a good one.

JDub24

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It really goes to show that things could always be worse.

What a thing to have to go through as a parent...
 

rivrrts429

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I can tell you that is the most pure expression of the situation. It’s like he pulled it right from my own mind.

I lived it when our twins were born 16 years ago. We lost Christopher shortly after birth but have been fortunate that Cole survived. Cole, we would learn a few weeks after birth, would be diagnosed with severe disabilities that would forever change our lives direction.

Reflecting back there was 9 to 12 months where I just “existed” trying to process the situation, the future as well as grieve.

Rich Hill and his family are very strong and I admire them very much. It’s difficult to articulate it appropriately in print.

Thanks for sharing.
 

monkeyswrench

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Read this in between events at my youngest's track meet...

Perspective

We...I...tend to lose track at times. When my mom had cancer, doctors would speak to me like I had a clue. I didn't. Same with some doctors with my middle kid.

I cannot fathom what some here have gone through, or the family in the article. Makes you tear up...even cold jackass like me...
 

beertruck

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We have been through a very similar situation with my first born son. Was a normal pregnancy up until two weeks before the delivery date, when during a normal visit the doctor told my wife that they were concerned about my son's size, and they wanted to do a emergency c section that day.
Life went from normal to not within hours. We remember the nurses using the term FLK when he was born, and rushing around (funny looking kid) was what it meant. They rushed him out of the room, and he was airlifted to Children's Hospital in Seattle. ( they are gods there!)
Nickolas has a unknown syndrome. He was small in size at under 4 lbs,( currently about 50lbs) had a heart condition, and hydrocephalus
( swelling of the brain)
At two weeks old he had his first open heart surgery, followed by a shunt surgery. By the time he was 10 he had had 5 open heart surgeries, and 4 shunt surgeries.
Nickolas does not walk or talk, and is tube fed, but he has a devilish smile.

Every time we would feel sorry for ourselves we were reminded of the many other children, and families we met at Children's that were worse off than we were. Kids that did not survive their conditions, or could not recognized or interact with their families. How dare we feel that way way when Nick looks up at you and smiles.
No matter what you are going thru in life, it could always be worse, and there are always others who are not as fortunate.

Nick is 23 years old now, and he loves speed and chaos. I could not imagine life without him. My other son who is also special needs is just the opposite
. IMG_1143.jpg
 

HNL2LHC

What is right and what is wrong these days!
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Thanks for the story. Tear jerking to say the least. Personally we going through a bit of health concern now but this puts it into perspective. We have had 5 great decades when others don’t even get 5 weeks. I have said this before be sure to love those close to you EVERY day..... it just might be the last opportunity you will have.
 

cole_skier

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I remember when they told us our daughter was blind. She was not quite 6 weeks old. I remember putting her in her car seat and driving away from Primary Children’s Hospital and the wife and I crying wondering how we were going to be able to take care of her. Turning onto the freeway I told my wife this is the deck we were dealt we can play or fold. She is almost 23 now married and is by far the best thing that ever happened to our family. I believe children with special needs are asked by god if they want to come to your family and they know you will take care of them and do your very best to make their lives as normal as possible. Plus it has changed me in so many positive ways. She was and is the best blessing we have ever had bestowed on us.


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overdue

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WOW,,,,,, There is not many people i look up to , But families with special needs children are truly remarkable , Those of you out there are the real heroes in my mind and heart . Im not a big religious person but you all are doing gods work ....... gives me faith in mankind , THANK YOU
 

ka0tyk

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We had a nicu baby and were fortunate that everything turned out “normal” in the long run. Like others mentioned here there are some families there that deal with much more and you just have to appreciate what you were given and take it one day at a time.
 

Skinny Tire AH

This ain't all folks! Skater368
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I can tell you that is the most pure expression of the situation. It’s like he pulled it right from my own mind.

I lived it when our twins were born 16 years ago. We lost Christopher shortly after birth but have been fortunate that Cole survived. Cole, we would learn a few weeks after birth, would be diagnosed with severe disabilities that would forever change our lives direction.

Reflecting back there was 9 to 12 months where I just “existed” trying to process the situation, the future as well as grieve.

Rich Hill and his family are very strong and I admire them very much. It’s difficult to articulate it appropriately in print.

Thanks for sharing.

Brother...
 

Skinny Tire AH

This ain't all folks! Skater368
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No Child should be born with difficulties like this.
No one should ever have to live through things like this.
No one should ever be faced with having to put that fucking orange DNR sticker on your own child's monitor.
No one should ever have to bury their child.

You never accept it, you learn to live with the pain. Every time we drive past central avenue on the 101 we both tear up.

That story was no different than ours, and several other members here.

It was painful to read, and as @rivrrts429 stated, difficult to articulate. The emotions are so raw, so real. They come from a deep painful place, somewhere deep in your soul.

This story is why I relentlessly defend the special needs community...every time.
 
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rivrrts429

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No Child should be born with difficulties like this.
No one should ever have to live through things like this.
No one should ever be faced with having to put that fucking orange DNR sticker on your own child's monitor.
No one should ever have to bury their child.

You never get accept it, you learn to live with the pain. Every time we drive past central avenue on the 101 we both tear up.

That story was no different than ours, and several other members here.

It was painful to read, and as @rivrrts429 stated, difficult to articulate. The emotions are so raw, so real. They come from a deep painful place, somewhere deep in your soul.

This story is why I relentlessly defend the special needs community...every time.


Well said brother [emoji106]
 

crzy2bealive

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This story puts a tear to my eye.

My twins were born 8 weeks premature....the worry and sleepness nights wondering if they were going to be ok in the nicu.

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rrrr

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Thanks to those of you that shared. I cannot fathom the stress and heartache you experienced, and reading the posts about these kids that have made such a meaningful contribution to their families' lives is humbling and yet uplifting.

Bless you all.
 

milkmoney

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Even though I never had children, I have the biggest sympathy for children with a disability, as stated it just doesnt seem fair..

I applaud all people that have children with disabilities and those that work with them also .....


High 5 to my bro cole .....[emoji113]

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rivermobster

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My eyes are leaking...

And not only from the original post, but the stories that have been posted here.

Thank you for making me...

Feel.
 
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