Father's Day

"Any man can be a father. It takes someone special to be a dad." 

- author unknown.

On this Father's Day, I want to acknowledge a few fathers that have been a part of my life. 

My dad's name was Sam, and we lost him to suicide on October 22, 1986. He lived with a lot of pain all his life, and passed a lot of that pain on to those that loved him. I've held a lot of anger towards him for many years, but as I age, I've learned more about mental illness and am working on accepting him for who he was. I wish I would have understood him more when he was here. I'm thinking of you today, Dad, and I love you for who you were. 

Then there's my Uncle Pete. He's always been there for me. I've never felt judged, nor been criticized by him. He knows my faults, yet loves me anyway. He's always accepted me for me. He's the dad I didn't have. He is currently in the hospital because he's had two heart attacks. I pray for him everyday. I love you, Uncle Pete. Come home soon, ok?

My son-in-law, Cameron, has been dealt with way more than a young father should ever have to face. He has given me a beautiful grandson, Charleston. Through all of the trials of being a dad to an SMA baby, he continues to love his son and my daughter, and I love him for that.

I put the saying at the top of my blog in honor of the next dad I want to write about. His name is Warren Moldovan, and he is "dad" to my daughter, Ashley. I met Warren when I was 19 years old, and he and his wife, Linda, have been part of our family ever since. We've raised our kids together, celebrated together, experienced deaths together, fought, made up, cried together, and laughed together. Throughout it all, he has loved Ashley, or "half pint", as he calls her. He stepped up to the plate the DAY we found out about Charleston, and became Ashley's "dad." He has been here, right along with Linda, for every single step of the way in our journey with SMA. He was at the hospital for Charleston's surgery, holding her up. He's raced to Reno from the Bay Area at literally a moment's notice more than once. He's been at every single fundraiser. He loves my daughter and my grandson, and continues to give her strength and support when she needs it. And I love him for it. Thank you, War, for being there for us.

So to these men...............CHEERS TO YOU................you are all in my heart forever. 

Happy Father's Day.

A Huge Thank You to Sophia's Cure Foundation

Yesterday there was a blog sent out by an organization fighting, like all other SMA families, to find a cure for this disease. I've met this family, and they are very nice. They have a huge following in our SMA community. However, the blog they sent out was very negative.....and it upset me greatly. While I understand we all have our "down" days.........all this blog gave me was bad feelings. They talked about SMA being terminal........isn't LIFE terminal????? It made me realize that they don't BELIEVE, and it makes me sad for them and for their followers. And by the way........SMA doesn't HAVE to be "terminal."

I choose to BELIEVE in my Charleston and other beautiful kids with SMA. I KNOW there is a successful treatment for them, and I am consumed with raising money so it gets here in a hurry!!!!

So last night, I went to bed sad. Because if they don't believe in our kids (not to mention their own), why are they even in this fight?

AND THEN THIS MORNING HAPPENED!!!!!! At 6:05am, Vinny Gaynor (www.sophiascure.com) sent me a text......."Are you awake?"

Well, then I was!!!!! He said to check Sophia's Cure fan page on facebook. All I can say is, I haven't stopped crying HAPPY TEARS ever since.

http://www.sophiascure.org/blog/working-together-has-made-a-difference

A wonderful, generous, unbelievable, awesome, inspiring donor has just sent $400,000 to help us fight SMA!!!!!! This money is going directly to the Gene Therapy program at Ohio State University. That's the program that my family has signed up to raise $10,000 for  The 200 Commitments, which is a group of us all working towards a goal of raising $1,000,000 for this treatment for our kids.

Not only did we get a gift of $400,000.......but then Vinny also got a grant for another $100,000!!!!!!!! AND........we are all working on winning another $250,000 through a contest on facebook!!!! Here's that link.......PLEASE vote daily if you have a facebook page!!!!

Vivint Gives Back Project

I am amazed. I am happy. Thank you, Sophia's Cure Foundation..................

I BELIEVE.

I Believe in Charleston

Guess what. Charleston can drive. Yep! My little guy is amazing. Ashley arranged for him to trial a power chair. For those of you that don't know what that is, it's a wheelchair with a motor. Yep!!!! Betcha didn't know they had those for little 18 month old kiddos.....well, they do. And now that's our next challenge. Getting one for our Charleston. Because they cost as much as a real car. And not a cheap real car.

What a fight this is going to be. Let me tell you how it's started. In the SMA world, it is a fact that the earlier you can get a child into a power chair, the better it is for them. In the "normal" world, kids don't get put into power chairs until they're much older than 18 months. But for kids with SMA, their intellect is very high, and they are able to understand and figure out HOW to do things that they CAN do. And as we all know, they cannot do much. But drive a power chair???? Yep! They can do it.

Charleston's physical therapist decided he can't do it. She refused to even come watch him. REFUSED. Needless to say, she's history. So Ashley went to Charleston's occupational therapist. Guess what.......yep, she's the physical therapist's friend. She refused to come see him in it! .....she's history......So then guess what. Ashley went to Charleston's social worker. Guess what! Yep.......she's history. So then Ashley went to their BOSS. Well, I could go on and on.......let's just say that if you don't support and believe in our Charleston, YOU'RE HISTORY!!!!!

So then Ashley called Shriner's. Nope, they can't help. Shriner's can't help???? Are you kidding me???? So then she called the doctor that sees him at Shriner's. Guess what!!!! HE BELIEVES IN CHARLESTON!!!! So he's seeing what he can do. And then, one of Ashley's friends connected her with a physical therapist that has agreed to see him this Wednesday. YAY!!!!

We want this for our baby. This is the ONLY chance he has for any kind of independence. AND HE CAN DO IT!!! At 18 months! Imagine how good he'll get when he gets older and experienced with it. We have dreams of taking him places, and racing with him. We'll get there. Because we believe in Charleston.

Ready..........set...........race ya !!!!!!

Happy Mother's Day

I get told all the time that I do too much. And I do. I know it. It's a fact.

Here's the reason why:

And I won't stop until there's a cure.

A Wish Came True for This Nana

When thinking about being a grandma, one of the things I had on my "wish list" was to feed the ducks with my grandson. I used to take my kids to feed the ducks quite often when they were little, and it was always so much fun, even when BJ ate moldy bread :). So, for me, what I wanted for my birthday was to make that memory with my Charleston.

We loaded him up in his "hospital room on wheels" (aka the van)....

...and drove to the local college, where they have a lake with ducks and geese!!! And also, signs everywhere that said "Do Not Feed the Ducks."  Then we loaded him up on his OTHER "hospital room on wheels" (aka stroller).

One of the best parts of the day was watching Ashley relax. Their winter lockdown is over, and this was our first outing in 6 months!!!! She was so happy....I got to hear her laugh, and watch her relax for the first time in months. Cuz this was a wish coming true for her too.

One of my favorite pictures of the day:

We got him down to the lake...and loaded him up with bread....

...he saw the ducks.....

 ...and even a mama duck with her eggs!!!!

And then... WE FED THE DUCKS!!!

OK, I cried. What else is new? Because my wish came true for my birthday. I got to feed the ducks with my Charleston. And that is a gift I'll always hold in my heart.

And he was happy. And Ashley was happy. And I was over the moon. 

Cuz we have Charleston.

On our way out, the ducks came to say goodbye to this precious little boy!!!!

They were even happy they got to meet him. 

Most people take something like this for granted. My Charleston is teaching me that nothing is as important as times like this. I'm a very lucky nana and mom, to have the family that I do. Don't take yours for granted.