Devastating genetic disorder is taking a little angel - O'Fallon Progress - bnd.com
READ Friday Fragments FIRST! Then please, please, please read this article!
Friday, January 28, 2011
Friday Fragments
My friend Liz does a blog post every Friday entitled "Friday Fragments". This post is just little bits and pieces of her week. Today, I'm giving it a try.
This week has been emotionally crazy. I've seen and heard things that just make me want to cry...sometimes tears of joy, and sometimes tears of sadness.
First of all, sadness.....
Tay Sachs is a disease that has affected the Rochman family. One of the members of this family, Tric, is a fellow Mom at my kids' school and we have gotten to know one another. Sadly, I didn't know much about Tay Sachs until very recently when Tric posted a link to an article done on her family and sweet Elise. You can read the article at the link below.
**Edit...I can't seem to make the link work...I will try to post it on it's own...sorry...technical difficulties!**
Reading this article really opened my eyes. The situation isn't at all what I had imagined in my mind's eye. Elise wasn't born with an obvious defect or disorder. She was born like both my kids....10 fingers, 10 toes, and appearing like a normal, healthy run-of-the-mill infant. Six months later, everything began to unfold, and their healthy child's future suddenly had a much different and fatal ending. One of the things that Elise's Mom, Kerri, says in the article completely hit my heart.
No one ever teaches you how to raise a dying child.
So, today, as Elise earned her angels wings and left her family behind, I hope that anyone reading will hug their kids a little tighter tonight, read one extra bedtime story, and thank God (or whatever you believe in) that your children are safe tonight. And, while you're at it, educate yourself on Tay Sachs by reading that incredible article, and keep the Rochman family in your thoughts. During times of tragedy and hardship, it is my experience that the people around you can lift you up and keep you moving forward. Keep them in your thoughts.....
Fragment two...(Sorry my "fragments" are so long....)
Yesterday I went to the salon for my second "Brazilian Blowout"....no, not THAT kind of Brazilian! It's a hair straightening and smoothing process! Anyhoo....the salon I go to has a few older stylists that do the "roll and set" on the older gals. The station directly across from me was one of those stations. As I sat there having my "treatment" I saw 3 different ladies come and go.
These ladies were of the generation where you go to the "beauty shop" once per week for a wash, roll, and set. Then next week you do it all over again. The hair in question was both "blue" and sparse....but the skilled stylist was well versed in the ways of the blue hair, and she could transform a sparsely covered head into quite the 'do!
Well, the final patron at the station was watching my process...I was near the end, where the stylist is doing the final blow dry and combing out my now sleek, straight blond locks. I had my head slightly down and eyes closed, yet I heard Miss Daisy say something across from me.
I opened my eyes and looked at her, only to see her moist eyes glistening. I said "I'm sorry, did you say something?", to which she replied "Yes, dear, I said you have the most beautiful hair".
At that moment, I saw my own future....50 years from now, as I near my late 80's, early 90's, my skin will be wrinkled from the experiences of life. My once thick, shiny blond locks will have been reduced to the occasional wisp of hair on my mostly-bare head. And I will sit in a salon of the future gazing at a younger patron and remembering back in the day when I had young kids and a head full of hair.
I'll recall how I didn't appreciate my thick sleek hair and how now I'd give anything to run my fingers through that hair of old and feel the silky strands cascading through my fingers.
As we locked eyes I saw the future in her eyes, and even though there were no "Enjoy it now honey" words spoken, I saw it in her eyes. I smiled at her and told her that I thought her hair was beautiful too. She chuckled and said something about how little there was of it, and I told her that I thought it was beautiful nonetheless.
And I thought in those moments after my gaze fell from hers...when I'm old and my hair starts falling out, I'm going to say "Screw it" and shave my head and buy some big colorful hats. I'll be a crazy hat wearing old lady, and I'll be happy about it!
Fragment 3....end it on a high note........
Before I start, let me just declare.......I LOVE ellipses.........I love them a lot!!!!!!!!!
OK....the high note.
Several weeks ago, Amber (my niece, who's more like my little sister, 'cause she's only 9 years younger than me, and that's how we roll in my family), called me and said she was pretty sure she was pregnant. This, in case anyone is wondering, is a GREAT piece of news. Amber and her husband Brandon have been trying to have another baby for a while now. Amber's brother, Schuyler, was killed in Afghanistan almost 2 years ago. His loss left a huge hole in our family. A new baby would in NO way, shape, or form take his place, but it would be a bright spot and something to rejoice over. We need a bright spot.
So, yesterday I was so happy when she called and said she had had an ultrasound and everything looked fine and she was ready to let the news out. Woo Hoo! I totally suck at keeping a secret, so I was SO glad that I could let it out!
So, tears of joy are being shed for the new baby coming to our family. Amber and Brandon will welcome this new bundle of joy in mid-September. Or, if their boys' births are any indication, late August....she went early with both Logan and Cole. Now, I'd be lying if I said we're not wishing for a girl, 'cause obviously we are, but if she has another boy, we'll all love him too! I can't wait for the "gender confirming" ultrasound because once we have that...well, let the shopping begin, folks!
Two boys will become big brothers and everyone will have a joyful occasion to focus on, instead of sadness. We will gather for a happy occasion. Since 2/2009 most, if not all, of the gatherings have been for a sad occasion, or reflecting on one of those sad occasions. This child will never get to know his/her Uncle Schuyler or Great Grandma Patch, but you can bet this child will have some "Wild Angels" watching over!
Now, go out there and LIVE the weekend....have fun, laugh a lot, and love.....always love.
This week has been emotionally crazy. I've seen and heard things that just make me want to cry...sometimes tears of joy, and sometimes tears of sadness.
First of all, sadness.....
Tay Sachs is a disease that has affected the Rochman family. One of the members of this family, Tric, is a fellow Mom at my kids' school and we have gotten to know one another. Sadly, I didn't know much about Tay Sachs until very recently when Tric posted a link to an article done on her family and sweet Elise. You can read the article at the link below.
**Edit...I can't seem to make the link work...I will try to post it on it's own...sorry...technical difficulties!**
Reading this article really opened my eyes. The situation isn't at all what I had imagined in my mind's eye. Elise wasn't born with an obvious defect or disorder. She was born like both my kids....10 fingers, 10 toes, and appearing like a normal, healthy run-of-the-mill infant. Six months later, everything began to unfold, and their healthy child's future suddenly had a much different and fatal ending. One of the things that Elise's Mom, Kerri, says in the article completely hit my heart.
No one ever teaches you how to raise a dying child.
So, today, as Elise earned her angels wings and left her family behind, I hope that anyone reading will hug their kids a little tighter tonight, read one extra bedtime story, and thank God (or whatever you believe in) that your children are safe tonight. And, while you're at it, educate yourself on Tay Sachs by reading that incredible article, and keep the Rochman family in your thoughts. During times of tragedy and hardship, it is my experience that the people around you can lift you up and keep you moving forward. Keep them in your thoughts.....
Fragment two...(Sorry my "fragments" are so long....)
Yesterday I went to the salon for my second "Brazilian Blowout"....no, not THAT kind of Brazilian! It's a hair straightening and smoothing process! Anyhoo....the salon I go to has a few older stylists that do the "roll and set" on the older gals. The station directly across from me was one of those stations. As I sat there having my "treatment" I saw 3 different ladies come and go.
These ladies were of the generation where you go to the "beauty shop" once per week for a wash, roll, and set. Then next week you do it all over again. The hair in question was both "blue" and sparse....but the skilled stylist was well versed in the ways of the blue hair, and she could transform a sparsely covered head into quite the 'do!
Well, the final patron at the station was watching my process...I was near the end, where the stylist is doing the final blow dry and combing out my now sleek, straight blond locks. I had my head slightly down and eyes closed, yet I heard Miss Daisy say something across from me.
I opened my eyes and looked at her, only to see her moist eyes glistening. I said "I'm sorry, did you say something?", to which she replied "Yes, dear, I said you have the most beautiful hair".
At that moment, I saw my own future....50 years from now, as I near my late 80's, early 90's, my skin will be wrinkled from the experiences of life. My once thick, shiny blond locks will have been reduced to the occasional wisp of hair on my mostly-bare head. And I will sit in a salon of the future gazing at a younger patron and remembering back in the day when I had young kids and a head full of hair.
I'll recall how I didn't appreciate my thick sleek hair and how now I'd give anything to run my fingers through that hair of old and feel the silky strands cascading through my fingers.
As we locked eyes I saw the future in her eyes, and even though there were no "Enjoy it now honey" words spoken, I saw it in her eyes. I smiled at her and told her that I thought her hair was beautiful too. She chuckled and said something about how little there was of it, and I told her that I thought it was beautiful nonetheless.
And I thought in those moments after my gaze fell from hers...when I'm old and my hair starts falling out, I'm going to say "Screw it" and shave my head and buy some big colorful hats. I'll be a crazy hat wearing old lady, and I'll be happy about it!
Fragment 3....end it on a high note........
Before I start, let me just declare.......I LOVE ellipses.........I love them a lot!!!!!!!!!
OK....the high note.
Several weeks ago, Amber (my niece, who's more like my little sister, 'cause she's only 9 years younger than me, and that's how we roll in my family), called me and said she was pretty sure she was pregnant. This, in case anyone is wondering, is a GREAT piece of news. Amber and her husband Brandon have been trying to have another baby for a while now. Amber's brother, Schuyler, was killed in Afghanistan almost 2 years ago. His loss left a huge hole in our family. A new baby would in NO way, shape, or form take his place, but it would be a bright spot and something to rejoice over. We need a bright spot.
So, yesterday I was so happy when she called and said she had had an ultrasound and everything looked fine and she was ready to let the news out. Woo Hoo! I totally suck at keeping a secret, so I was SO glad that I could let it out!
So, tears of joy are being shed for the new baby coming to our family. Amber and Brandon will welcome this new bundle of joy in mid-September. Or, if their boys' births are any indication, late August....she went early with both Logan and Cole. Now, I'd be lying if I said we're not wishing for a girl, 'cause obviously we are, but if she has another boy, we'll all love him too! I can't wait for the "gender confirming" ultrasound because once we have that...well, let the shopping begin, folks!
Two boys will become big brothers and everyone will have a joyful occasion to focus on, instead of sadness. We will gather for a happy occasion. Since 2/2009 most, if not all, of the gatherings have been for a sad occasion, or reflecting on one of those sad occasions. This child will never get to know his/her Uncle Schuyler or Great Grandma Patch, but you can bet this child will have some "Wild Angels" watching over!
Now, go out there and LIVE the weekend....have fun, laugh a lot, and love.....always love.
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