Monday, February 14, 2011
Will You Be My Valentine?????
Today was wonderful. Because I have my Charleston for Valentine's Day.
Thursday, February 10, 2011
I miss her.
Today is a really, really, really hard day. I am so lonesome I can hardly breathe. I miss my daughter. I talk to her every day, usually several times. We text each other all day. I see her all the time. But I miss her.
She's not only my daughter. She's my best friend. And I miss her.
We used to do everything together. Movies. Lunch. The beach. Barnes & Noble. Baskin/Robbins. SHOPPING!!!! Facials. Mani/pedis. Walks. Vacations. I miss her.
We used to laugh all the time together....sometimes with each other, sometimes at each other. I miss her.
I wouldn't trade him for anything in the world......I never want to see life without him. But I sure miss her.
She's not only my daughter. She's my best friend. And I miss her.
We used to do everything together. Movies. Lunch. The beach. Barnes & Noble. Baskin/Robbins. SHOPPING!!!! Facials. Mani/pedis. Walks. Vacations. I miss her.
We used to laugh all the time together....sometimes with each other, sometimes at each other. I miss her.
I wouldn't trade him for anything in the world......I never want to see life without him. But I sure miss her.
Friday, January 21, 2011
SMA Gala Fundraiser
This week I was lucky enough to attend an amazing fundraiser for SMA. It was in Los Angeles, and was put on by the Prendiz family, who have an SMA angel, Hannah. It would have been Hannah's 2nd birthday.
First of all, I met the most amazing people!!!! There were about 7-8 SMA families there, including 3 kids. Each family had its own story......but really, our stories are the same. We "get" it. We know what it's like to hear those words "Your baby won't live to be 2." We know what it feels like to watch your baby stop breathing. We know what it is to love these kids. And some of them know what it's like to bury their baby. I never want to get there. Here is a picture of the SMA "family" that attended:
Which brings me to what I learned!!!! We have researched so much of what's out there for SMA --- and now believe that the biggest impact on our little Charleston will be from gene therapy. Not that any of the other things won't be a help also ---- but it looks to us like gene therapy will make the biggest difference.
There is a family, Vinny & Catherine Gaynor, who have a daughter with SMA, Sophia. They have started a foundation - Sophia's Cure, http://www.sophiascure.com and are raising money to help fund the gene therapy research done by Dr. Brian Kaspar in Ohio. Vinny & Dr. Kaspar were both at the fundraiser, and I had the pleasure of spending time with them and coming out of there with HOPE. Dr. Kaspar is an amazing man. He loves our babies. He is doing his utmost to save them. And we adore him for it. This is Dr. Kaspar & I at the fundraiser:
Our biggest hurdle is money. He is THISCLOSE to taking it to the FDA for the 1st clinical trial. He gets his funding from families like us. Fundraisers, donations, garage sales, bake sales, ebay sales, golf tournaments, donating a portion of sales, etc. And we are all helping in whatever way we can!
Ashley's best friend, Cindy Field, is organizing a bake sale just for this purpose. All proceeds will be going to Sophia's Cure, which will send them on to Dr. Kaspar's program. Here are the details:
"Hope for Charleston" SMA Research Fundraiser and Bake Sale
Time
Location Flying colors comics And Other Cool Stuff
More Info
First of all, I met the most amazing people!!!! There were about 7-8 SMA families there, including 3 kids. Each family had its own story......but really, our stories are the same. We "get" it. We know what it's like to hear those words "Your baby won't live to be 2." We know what it feels like to watch your baby stop breathing. We know what it is to love these kids. And some of them know what it's like to bury their baby. I never want to get there. Here is a picture of the SMA "family" that attended:
Which brings me to what I learned!!!! We have researched so much of what's out there for SMA --- and now believe that the biggest impact on our little Charleston will be from gene therapy. Not that any of the other things won't be a help also ---- but it looks to us like gene therapy will make the biggest difference.
There is a family, Vinny & Catherine Gaynor, who have a daughter with SMA, Sophia. They have started a foundation - Sophia's Cure, http://www.sophiascure.com and are raising money to help fund the gene therapy research done by Dr. Brian Kaspar in Ohio. Vinny & Dr. Kaspar were both at the fundraiser, and I had the pleasure of spending time with them and coming out of there with HOPE. Dr. Kaspar is an amazing man. He loves our babies. He is doing his utmost to save them. And we adore him for it. This is Dr. Kaspar & I at the fundraiser:
Our biggest hurdle is money. He is THISCLOSE to taking it to the FDA for the 1st clinical trial. He gets his funding from families like us. Fundraisers, donations, garage sales, bake sales, ebay sales, golf tournaments, donating a portion of sales, etc. And we are all helping in whatever way we can!
Ashley's best friend, Cindy Field, is organizing a bake sale just for this purpose. All proceeds will be going to Sophia's Cure, which will send them on to Dr. Kaspar's program. Here are the details:
"Hope for Charleston" SMA Research Fundraiser and Bake Sale
Time
Saturday, February 19 · 12:00pm - 5:00pm
Location Flying colors comics And Other Cool Stuff
2980 Treat Blvd
Concord, CA
More Info
WHAT: "Hope for Charleston" Bake sale (yummy treats, healthy options, and some comic book giveaways too!)
Spinal Muscular Atrophy (SMA) is a motor neuron disease. It is the #1 genetic defect killer of children under the age of 2. Often parents are carriers of the disease but show no symptoms. Over time the disease can interfere with muscle control in any part of the body including those connected with breathing and swallowing. H...owever, there is STILL HOPE. A cure is right around the corner!
***all proceeds go directly to SMA Research***
WHEN: Saturday, February 19th, 12-5pm
WHERE: Flying Colors Comics and Other Cool Stuff, 2980 Treat Blvd., Concord, CA (Trader Joe's shopping center)
DETAILS: Concord natives and Carondelet and De La Salle graduates, Ashley and Cameron Goeppert had a baby boy, Charleston "Cash" Sage Goeppert on December 1st, 2009. Ashley, a registered nurse and Cameron, a volunteer firefighter in Verdi, Nevada, thought that they were having a healthy baby boy. Tragically, they were told at Cash's three month check up that he was"floppy" and tests proved that he had the genetic disease SMA. This devastating news has not stopped them from doing EVERYTHING they can to keep their baby boy. Ashley quit her job as a nurse and takes care of Cash 24 hours a day, doing numerous types of therapy with him. He is a happy, smart, funny, handsome and loving 13-month old. We want to find a cure to help save his precious life and every child afflicted with this horrible disease.
Spinal Muscular Atrophy (SMA) is a motor neuron disease. It is the #1 genetic defect killer of children under the age of 2. Often parents are carriers of the disease but show no symptoms. Over time the disease can interfere with muscle control in any part of the body including those connected with breathing and swallowing. H...owever, there is STILL HOPE. A cure is right around the corner!
***all proceeds go directly to SMA Research***
WHEN: Saturday, February 19th, 12-5pm
WHERE: Flying Colors Comics and Other Cool Stuff, 2980 Treat Blvd., Concord, CA (Trader Joe's shopping center)
DETAILS: Concord natives and Carondelet and De La Salle graduates, Ashley and Cameron Goeppert had a baby boy, Charleston "Cash" Sage Goeppert on December 1st, 2009. Ashley, a registered nurse and Cameron, a volunteer firefighter in Verdi, Nevada, thought that they were having a healthy baby boy. Tragically, they were told at Cash's three month check up that he was"floppy" and tests proved that he had the genetic disease SMA. This devastating news has not stopped them from doing EVERYTHING they can to keep their baby boy. Ashley quit her job as a nurse and takes care of Cash 24 hours a day, doing numerous types of therapy with him. He is a happy, smart, funny, handsome and loving 13-month old. We want to find a cure to help save his precious life and every child afflicted with this horrible disease.
We hope you can attend if you're local!!!! And if you're ever looking for a wonderful foundation to donate to........................remember Sophia's Cure . They're a family, just like us, trying to save all of our babies. Charleston says thank you!!!!
Friday, January 14, 2011
Good Things About SMA
I've been thinking positively about SMA lately. Instead of constantly focusing on the FEAR, I'm trying to focus on the wonderful things that SMA has brought to my life. Because believe it or not, there are some wonderful things!!!!
Charleston wouldn't be Charleston without SMA. As much as I hope and pray and BELIEVE that he will receive the "cure"...... I love him just the way he is. You see, he has these beautiful, deep blue eyes. When he looks at you, he speaks to you through them. Sometimes he even gives me butterfly kisses, and when he does that, it melts my heart.
He's happy. He's surrounded by the love of our family (especially his incredible mama who never ever ever leaves his side). By him having SMA, Ashley has been able to stay home with her beautiful baby and be the most devoted mother I've ever known. And he gets to received oodles of love every second of his life.
We've been re-introduced to Mickey Mouse!!!! Hot dog, hot dog, hot diggity dog. Who would have thought that at my young age of 54, I'd be dancing to a hot dog song????? See, that's another good thing about SMA.
We've "met" other amazing SMA families. Through Facebook and SMASpace, Ashley is helped daily by friends that are living the same life as she. These other parents truly know more than the doctors, and because of them, we still have Charleston. Last year I went to an SMA Conference and met a few of them in person, and this weekend I'm traveling to LA to attend a fundraiser, and will meet even more. I can't wait to give a few big hugs!!!!
Other wonderful people have come into our lives as well. Last summer, out of the blue, I heard from an amazing woman that had never met us, but had heard of our little Charleston and wanted to help. Her name is Katie Patterson. She put together a huge fundraiser downtown Reno, along with the volunteer firefighter family up here (I couldn't stop crying!!!! - surprise, surprise). They raised enough money for Ashley & Cameron to purchase a van to transport the baby in, and they just ordered two more pieces of equipment that he needs. Without Katie and the support of the firefighters, we wouldn't have been able to get the things that we need to help him with his life.
SMA has also taught me to slow down (well, kind of). I take the time to smell the flowers, because Charleston loves them --- so when the weather is good and he can leave the house, we go for walks and find flowers. You should see his little dimpled hands holding a flower to his face, and the look in his eyes when he looks at one. Precious. I've learned to enjoy poop in a bathtub!!!! It cracks me up! I love it when my house is full of baby stuff....granted, a cough assist machine and oxygen tanks aren't exactly what I pictured when Ashley was pregnant, but now I love it when all that stuff is here, because it means he is too.
I know who my true friends are. You know who you are. Thank you, I couldn't get through this without you.
There are good things about SMA. This little boy is one of them.
Charleston wouldn't be Charleston without SMA. As much as I hope and pray and BELIEVE that he will receive the "cure"...... I love him just the way he is. You see, he has these beautiful, deep blue eyes. When he looks at you, he speaks to you through them. Sometimes he even gives me butterfly kisses, and when he does that, it melts my heart.
He's happy. He's surrounded by the love of our family (especially his incredible mama who never ever ever leaves his side). By him having SMA, Ashley has been able to stay home with her beautiful baby and be the most devoted mother I've ever known. And he gets to received oodles of love every second of his life.
We've been re-introduced to Mickey Mouse!!!! Hot dog, hot dog, hot diggity dog. Who would have thought that at my young age of 54, I'd be dancing to a hot dog song????? See, that's another good thing about SMA.
We've "met" other amazing SMA families. Through Facebook and SMASpace, Ashley is helped daily by friends that are living the same life as she. These other parents truly know more than the doctors, and because of them, we still have Charleston. Last year I went to an SMA Conference and met a few of them in person, and this weekend I'm traveling to LA to attend a fundraiser, and will meet even more. I can't wait to give a few big hugs!!!!
Other wonderful people have come into our lives as well. Last summer, out of the blue, I heard from an amazing woman that had never met us, but had heard of our little Charleston and wanted to help. Her name is Katie Patterson. She put together a huge fundraiser downtown Reno, along with the volunteer firefighter family up here (I couldn't stop crying!!!! - surprise, surprise). They raised enough money for Ashley & Cameron to purchase a van to transport the baby in, and they just ordered two more pieces of equipment that he needs. Without Katie and the support of the firefighters, we wouldn't have been able to get the things that we need to help him with his life.
SMA has also taught me to slow down (well, kind of). I take the time to smell the flowers, because Charleston loves them --- so when the weather is good and he can leave the house, we go for walks and find flowers. You should see his little dimpled hands holding a flower to his face, and the look in his eyes when he looks at one. Precious. I've learned to enjoy poop in a bathtub!!!! It cracks me up! I love it when my house is full of baby stuff....granted, a cough assist machine and oxygen tanks aren't exactly what I pictured when Ashley was pregnant, but now I love it when all that stuff is here, because it means he is too.
I know who my true friends are. You know who you are. Thank you, I couldn't get through this without you.
There are good things about SMA. This little boy is one of them.
Sunday, January 2, 2011
The Best Christmas Ever
We had an amazing Christmas. Charleston got to participate in everything we did!
First of all, I got him a little Christmas tree for his playroom. Then I went to the Disney Store to look for Mickey ornaments - and GUESS WHAT!!!! They had them!!!! So I bought every single one. Here are some photos of the little family decorating his little tree:
Then, of course, they decorated their big family tree in their living room:
Of course, we had to make cookies and candy for all of us to eat. And Charleston helped us all the way! First were the sugar cookies:
 |
| All little boys like to get ooey gooey!!!! |
And of course little mama had him make some Christmas projects!
Christmas Eve was amazing. Charleston, Ashley, Cameron, Unkie B, Grandpa Greg, and I were there. We had a great dinner and loved being with baby boy!!!! I received the best gift I could have ever wished for --- he called me NANA!!!!!!! He said it out loud so everybody could hear it. I never thought I would hear that --- my feet still haven't touched the ground!!!!
 |
| Even Unkie B couldn't resist his cheeks. |
 |
| The loves of my life. |
 |
| Proud and happy little mama! |
 |
| Check out Charleston's expression....it's like he's saying WHEN ARE YOU GONNA LEAVE ME ALONE!!!!??? Christmas Day the little family opened Cash's stocking and presents with him. He's not spoiled!!!! Santa was just really good to him this year, because he knows what a special and strong guy he is. Thanks Santa!!!! |
It was an amazing Christmas for our family. We are so grateful that we have Charleston. He is teaching us all so much, and we are amazed at his strength. Here's one last picture to put a smile on your face!!!!
I've never seen anything so cute in my life.
Saturday, December 18, 2010
Getting ready for Christmas!
We are "almost" ready for Santa to come!!!! Ashley has been busy with Charleston making fun stuff to decorate the house with.
They got a Christmas tree, but more importantly, they got Charleston his own tree. When my kids were growing up, they got to pick out a little tree for their rooms and decorate it however they wanted. So Ashley started that tradition with Charleston this year! And guess what kinds of ornaments it's decorated with!!!! Yep.....Mickey Mouse!!!! He loves it.
This Monday, Charleston and I are going to make chocolate truffles and sugar cookies. I can't wait!!!!
We'll have a quiet Christmas this year. BJ will be here (yay!), and Grandpa Goeppert. And best of all, Charleston will be here. That's all I want for Christmas.
Be grateful. I am.
Wednesday, December 1, 2010
Birthday Boy
Today has been a HUGE, GIANT, WONDERFUL, AMAZING, THRILLING, MIRACULOUS day. My Charleston turned one!!!! 8 months ago when we received the diagnosis of SMA Type 1, we were told to take this beautiful baby home and that there was nothing that could be done.
Leave it to my brilliant, brave daughter to discover that there is ALOT that can be done. And she has done it. Each and every thing. Without complaining. EVER.
So, while this is a thrilling day for us to celebrate Charleston's birthday, I want to take time out to talk to my daughter.
Ashley, you are amazing. Even though you can be kinda dingy at times........and of course, you don't get that from me :}}} ...... you have saved this baby's life. Your dream of being a mommy came true when Charleston was born. I'll never forget the day I got to finally meet him in person. It was almost as good as when I got to meet you and your brother for the first time!!!!! I fell in love last December 1st with a beautiful, perfect, little boy.
When doctors started to tell us that something was wrong with him, I remember talking with you about how could that be? He was perfect!!!!! And you know what, Ash? HE IS PERFECT. Charleston is the most beautiful, perfect little boy in the world. And I don't think there is anything wrong with him. He has blue eyes. He has a great smile. He has blondish hair. He has a nose. He just got something extra....and that is SMA. That is just him, and he wouldn't be him without all of those things combined. He's teaching us, along with the rest of the world, about unconditional love.
I have watched your devotion to Charleston. Sometimes I feel like you've given up your life for him, but really........your life began the day God gave him to you. That's what being a good mama is. And that is what you are. You live and breathe for this baby, and I am so proud of you I could pop. You are amazing, brave and determined; and because of that, we got to celebrate his 1st birthday today.
So Ashley........I love you just like you love Charleston, and don't ever forget it. I am proud of the mother that you are. You have given me such a gift, and I thank you from the bottom of my heart. I love you, tweetie.
Leave it to my brilliant, brave daughter to discover that there is ALOT that can be done. And she has done it. Each and every thing. Without complaining. EVER.
So, while this is a thrilling day for us to celebrate Charleston's birthday, I want to take time out to talk to my daughter.
Ashley, you are amazing. Even though you can be kinda dingy at times........and of course, you don't get that from me :}}} ...... you have saved this baby's life. Your dream of being a mommy came true when Charleston was born. I'll never forget the day I got to finally meet him in person. It was almost as good as when I got to meet you and your brother for the first time!!!!! I fell in love last December 1st with a beautiful, perfect, little boy.
When doctors started to tell us that something was wrong with him, I remember talking with you about how could that be? He was perfect!!!!! And you know what, Ash? HE IS PERFECT. Charleston is the most beautiful, perfect little boy in the world. And I don't think there is anything wrong with him. He has blue eyes. He has a great smile. He has blondish hair. He has a nose. He just got something extra....and that is SMA. That is just him, and he wouldn't be him without all of those things combined. He's teaching us, along with the rest of the world, about unconditional love.
I have watched your devotion to Charleston. Sometimes I feel like you've given up your life for him, but really........your life began the day God gave him to you. That's what being a good mama is. And that is what you are. You live and breathe for this baby, and I am so proud of you I could pop. You are amazing, brave and determined; and because of that, we got to celebrate his 1st birthday today.
So Ashley........I love you just like you love Charleston, and don't ever forget it. I am proud of the mother that you are. You have given me such a gift, and I thank you from the bottom of my heart. I love you, tweetie.
Subscribe to:
Posts (Atom)