A Dark Day....and then some giggles from my Charleston

Yesterday I had a dark day. I have those now and then. A day when I wake up with a heavy heart. A day when I cry over everything, but really, it's over my Charleston. A day when I grieve for the life that I thought my daughter would be living, but isn't. A day when I think of what I thought what being a grandma would be....but isn't. A day when I feel very, very alone, and very, very sad.

I looked at pictures of my Charleston on my computer and found the ones I took the day he was diagnosed with SMA. I looked at the pictures of the day he was born. And I wondered why. WHY??????

I spent the morning with my girlfriend Sandy, and she was able to make me smile & be giggly. That felt good. But inside I was crying.

So I was pretty pathetic, and couldn't pull myself out. When I got home, I let myself cry.....cuz sometimes, ya know, you just need to do that. 

We have been very worried about Charleston being bi-pap dependent. What does that mean? In the SMA world, it means the disease is progressing. It means he can't breath on his own without it. It means we won't get to look at his sweet face without a machine on it. It means it's another step closer to Ashley and Cameron having to make a choice to trache this precious baby boy. It means that my daughter is sad, and worried. Like she doesn't have enough to worry about already. It means I don't know what to say....because I've never been in this situation before. It just sucks.

But then two wonderful things happened. First of all, Ashley got through to Charleston's pulmonologist at Stanford (a feat in itself) and talked to her about it. The doctor asked a lot of questions about him...and then Ashley heard the wonderful news that our little baby is NOT bi-pap dependent!!!!! Thank you Jesus!!!!! Charleston recently got a new piece of equipment, called a Trilogy, which is a fancy bi-pap. And he just likes it. It makes it easier for him to breathe, and makes suctioning much less frequent......so he's happy on it. And that's what we want, a happy baby boy. And what I want is a less-stressed out daughter, and that's what I have now. So when she told me the news, what did I do???? Jump for joy???? No, I cried. Man.

Then the second thing happened. I received a message from a young woman, who used to be a young girl (duh.....). The reason I say this, is that I haven't seen her since she was a young girl. She is the niece of a friend, and she grew up to be an attorney, with a husband and 4 small children, two of them being my Charleston's age. We re-connected over facebook (thank you Mark Zuckerburg!!!!). Unknown to me, she has been following Charleston's journey, and it has touched her. She recently read a book called "Monday Matters" and decided to take herself on a personal journey of making a difference to someone each Monday. And she decided to make a difference to us first. She could not have reached out to me on a better day. She wants to learn about SMA; she wants to help us get the word out and educate others; she just wants to help. Do you know what this meant to me yesterday? It meant that there are people out there that do care...that do want to help...that aren't afraid to get involved. She's not scared to meet my Charleston, like other people are. See, we have "close" friends and family that haven't even reached out. And that just plain hurts. But this young lady MADE A DIFFERENCE to my little family yesterday. She made us feel not so alone. Those not affected by SMA.....you have no idea what the loneliness feels like. To our SMA families....you get it. So thank you, Jennifer. Thank you for your message, thank you for the phone call......and sorry I cried!!!!! It was just my day to lose it.

And then, last night when I got into bed......so thankful that my day was over.....I got this video of my Charleston laughing. And I went to bed last night feeling good about my day. Someone made a difference by reaching out when I least expected it, and my Charleston's daddy made him laugh. And I'm okay now.

Diagnosis Day Anniversary

March 15, 2010. A year ago today, our world fell out from under us. "Spinal Muscular Atrophy, Type 1." "Take your baby home and love him. There is nothing we can do." This video was taped on the way to the doctor's office that day.

NO!!!!!!!!!!!!!!!!!

We did take him home, and we do love him. But there are LOADS of things we can do, and have done, and will do. First of all, we grieved. We threw up. We cried. We begged. We wondered WHY???? Why HIM???? Why us????? We closed ourselves off to most everyone. And we researched.

First, we found Families of Spinal Muscular Atrophy. They immediately sent us information on SMA and a big, giant goody box for Charleston, full of toys that he could play with and other things we could use for him. Then we found a community support group that has helped us save his life: SmaSpace. It is a site for parents, family members, caregivers and friends to communicate with each other. This site is where we found out that SMA does NOT have to be a death sentence!!!! It gave us hope. Another huge source of information and support has been Facebook. We've met so many other families with babies with SMA, and they have become dear friends of ours, since many of our "real friends" have disappeared. Through SMASpace and Facebook, we have met the Gaynor family, who have started a foundation in honor of their beautiful daughter Sophia, who also has SMA Type 1.  Sophia's Cure does many wonderful things for our community, from giving us information in a way that we can understand it, to introducing us to the leading research & the doctor that's heading it (go Dr. Kaspar!!!!), and also fundraiser for not only the gene therapy program under Dr. Kaspar, but also for iPads for SMA kids!!!! They are an amazing family and we consider them members of ours now. Ashley has also made a new "best friend", Kristin Banjany, mama of SMA kiddo Nathan. Kristin, I cannot thank you enough for being there for my daughter through the thick and thin of SMA. You have made a difference in her journey.

This year has brought lots of tears and heartache, but also lots of smiles and joy. We laugh with this precious baby boy each and every day. His smile and his voice melt my heart. When he looks at me I feel like he can see my soul. He makes me a better person.

In the last year, we have discovered that there is a treatment right around the corner. It's gene therapy, and it will enable me to keep my grandson. It's thisclose to beginning the first clinical trial at the FDA, but of course, we need funding in order to get it there in time for our little boy. This is where you can help. Sophia's Cure has started a HUGE fundraiser, called "The 200 Commitments" The goal is to raise $1,000,000 to fund the first clinical trial. If you break it down to one $5,000 fundraising commitment for 200 people, it becomes attainable. So far, Ashley & I have a total of 5 people signed up (including both of us). You have a year to raise the money. You can do bake sales, car washes, spaghetti feeds, craft fairs, running/biking marathons, art shows, ANYTHING!!!! Be creative, but be persistent.

WE NEED HELP. 

WE CANNOT DO THIS ALONE.

I have learned this year that I am not afraid to ask for help. I am asking each and every one of you to help me save the life of my grandson. This will make the difference.

Flying Colors Bake Sale

What a wonderful event yesterday! Ashley's best friend, Cindy, held a Bake Sale Fundraiser to help in our fight against SMA at her family's business, Flying Colors Comics. We had SO MUCH FOOD!!!!! It was amazing. So many wonderful people donated home made goodies. And Cindy was brilliant. On the drive down, I was thinking MAYBE we would make $300 --- and Cindy said her goal was to make $500 - but we made $2,034.00!!!!!

Each penny is going to Sophia's Cure, which is a wonderful foundation set up by Vinny and Catherine Gaynor, who have a daughter, Sophia, with SMA just like our Charleston. They will donate it directly to Ohio State University/Dr. Brian Kaspar, who is leading the fight against SMA with Gene Therapy. We're so excited that the fundraiser was such a success. 

Joe, Cindy and Ashton Field - the organizers of the event!

I want to thank everyone from the bottom of my heart that was involved - Cindy, her parents, her little boy Ashton....thank you for loving us like you do and for organizing the event and making it possible!!!! To all my friends that showed up to help and with baked goods.......AND WITH MONEY!!!!!! I love you all. And to the wonderful Flying Colors customers and people that came by because they "heard" about it - every single penny added up to over $2,000.00!!!!! I have a happy heart. With people like this, SMA doesn't have a chance - we WILL win.

Debbie Black (my first ever friend), Dean Parrish (my mom's best friend), and Lisa Caldurulo (Debbie's daughter)

Shauna Maffei and her son, Vincent

Cash's Uncle Graham

The Allen's - Carl, Jonathan (aka Little Dood), Ashley & Donna

Wonderful family friends - Shane and Linda Moldovan.

More Moldovans! Linda, Mandy, Warren & Daniel.

One of the tables of goodies.

Adam & Claire

Charleston's godparents, Tiffany & Travis Vandevoir

Greg White, a friend of Ashley & Cameron's from high school

Mrs. White, Greg's mom 

Amanda Paustian, another friend from high school!

Amazing Mickey Mouse cupcakes

Mickey Mouse pants!!!!

RJ Bisaha and his sweet girlfriend (he's another friend from high school)

Libby Field keeping Ashton occupied - what a great grandma!

Deena & Mike Zeidler

Mickey Mouse cake!!!!

Dan French, a guy that used to work with my son, BJ, who has become a member of our family!

Grandpa "GiGi" Goeppert

Guy & Karen Golightly (their daughter, Kam, is a friend of Ashley's from grammar school!)

Will You Be My Valentine?????

Today was wonderful. Because I have my Charleston for Valentine's Day.

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.

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

Saturday, February 19 · 12:00pm - 5:00pm

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Location Flying colors comics And Other Cool Stuff

2980 Treat Blvd

Concord, CA

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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.

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!!!!

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.