A Bill of Rights for Parents of Kids with Special needs

Just found this online - thought it would be good for EVERYONE to read:

A Bill of Rights For Parents of Kids With Special Needs

We, the parents, in order to form a more perfect union, establish justice, ensure tranquility (and sanity) and promote the general welfare of our families, do ordain and establish this Bill of Rights.

* We have the right to expect our kids to be seen for who they are as individuals, not as labels or diagnoses.

* We have a right to trust our instincts about our kids and realize that experts don't always know best.

* We have a right to ignore the remarks, questions and stares and not give explanations or excuses for why our children are the way they are.

* We have a right to choose alternative therapies for our kids.

* We have a right to roll our eyes straight out of our heads when we encounter certain mothers who brag nonstop that their kids are the smartest students/best athletes ever.

* We have a right to wonder “What if…” every so often.

* We have a right to play aimlessly with our children. Not for therapeutic or educational purposes—just forfun.

* We have a right to blast Bruce Springsteen/Tom Petty/Any Rocker, down a glass of Pinot Grigio, get a pedicure, go out with the girls or do all of the aforementioned at once if that's what it takes to avoid burnout.

* We have a right to react to people’s ignorance in whatever way we feel necessary.

* We have a right to not always have our child be the poster child for his/her disability and some days be just a child.

* We have a right to go through the grieving process and realize we may never quite be "over it."

* We have the right to give our kids chores. Even better if they can learn to make breakfast in bed for us.

* We have a right to stretch the truth when we fail to do the exercises the therapist asked us to do this week because we were too darn tired or overwhelmed.

* We have a right to have yet more Pinot Grigio.

* We have a right to fire any doctor or therapist who's negative, unsupportive or who generally says suck-y things.

* We have a right to tell family and friends that everything may not be OK—at least not how they mean it, anyway.

* We have a right to hope for an empty playground so we don’t have to look into another child’s eyes and answer the question, “What’s wrong with him?”

* We have a right to bawl on the way back from the playground, the birthday party, the mall or anyplace where our children’s challenges become glaringly obvious in the face of all the other kids doing their typical-development things.

* We have the right to give our children consequences for their behavior. They may be “special” but they can still be a royal pain in the ass.

* We have a right to take a break from Googling therapies, procedures, medicine and treatments for our kids to research upcoming concerts, exotic teas or anything not related to our children’s disabilities.

* We have a right to talk about how great our kids are when people don’t get it.

* We have the right to not always behave as inspirational icons who never complain or gripe about the sometimes awful realities of raising a child with special needs.

* We have a right to expect quality services for our children not just when they’re infants, preschoolers and elementary school age, but when they’re in older grades and adults, too.

* We have a right to adequate funding for those services and to not have to kick, scream or endure a wait for them.

* We have a right to get tired of people saying, as they give that sympathy stare, "I don't know how you do it."

* We have a right to wish that sometimes things could be easier.

* We have a right to cheer like crazy anytime our children amaze us—or weep like lunatics.

* We have a right to push, push and push some more to make sure our children are treated fairly by the world. 

Nana & Unkie B's 1st Fundraiser!!!!

This past Saturday, my son (BJ aka Brad) and I held a fundraiser for our Charleston!!!

We were AMAZED at the raffle & auction donations given to us by businesses and people that heard about our little guy. We had a HUGE turnout and got to see and reconnect with old friends!!!

Katie Lee, a friend of Ashley's from high school!

Graham & Hollie Goeppert, Anita Wardle, RJ Bisaha with his girlfriend!!!

Amanda Paustian, a friend of Ashley's from high school!

Kathy Bergstad, our old neighbor from when the kids were growing up. We had the fundraiser at Kathy and her husband's restaurant, the Great IMpasta!

Two of my besties - Lori Vainer and Janice Giaccoma. Friends of mine since high school! Love you girls.

Another high school classmate of Ashley's, Angie & her husband. So glad you came!!!!

This is Jane. She has SMA, just like Charleston, and she's 8 years old!!! She's the little angel that is giving Charleston her power chair. We were HONORED to have her and her family attend!!!!

And then we were surprised with a visit from two more kids with SMA!!!! On the left is Danny. He's a Type 2 kid, and starts middle school in the fall! The girl on the right is Aubrianna, and she's a Type 3. We didn't know they were coming, and of course, we were THRILLED to have them too!!!!

And this is the reason why we did what we did! This is what little Charleston was doing while we were all being together in his honor, to help him with his precious life. He was touching grass for the first time!!!! Here's a video that Ashley took while she was telling him what grass is. We always take everything for granted, don't we? Imagine being this precious baby, and being introduced to something as simple as grass. I am so grateful that I am Charleston's nana and get to share in these moments, even if it's just through video.

Thank you to EVERYONE that participated!!!! It was amazing, and TOGETHER WE MADE A DIFFERENCE!!!!!

All I can say is WOW

Charleston listening to daddy on the phone.

It's all about him. This little 19 month old baby boy. My grandson. Charleston. THE love of my life. This baby???? Man, he pulls at my heart strings. I'd give my life for him.

Charleston & nana having fun!

AMAZING things have been happening. God's showing up when I've been questioning where He is.

Charleston trying to figure out what this is!

Miracle #1:  Charleston is able to spend TONS of time without his bipap (it helps him breathe) because he's been at sea level. He speaks louder now. We don't need the microphone anymore!!!! He's stronger and funnier and happier because he can BREATHE!!!! Spending time at sea level has made such a huge difference for him, instead of being at a high elevation.

Checking things out.

Miracle #2:  Charleston needs a power chair. I've written before about the battle that Ashley has been experiencing in trying to get him one. About 2 weeks ago, my friend Elisa went to shop at Target. She noticed a little girl in a power chair with her mom. She decided to go speak with them, asking about the chair. After talking with them for a few minutes, the mom asked about Charleston's diagnosis. When Elisa told her that it's SMA, the mom said that her daughter also has SMA.  Jane, the little girl, got the chair when she was 2 years old, and now she's 8!!!! She is receiving a new power chair because she has outgrown the current one........and CHARLESTON GETS HER POWER CHAIR!!!!! Oh my gosh, have we been doing the happy dance all over town!!!! We cannot believe the generosity of Jane's mom, Kelly. Not only are they giving him the chair, but I brought Ashley and Charleston over to their home, and everyone hit it off. Now Ashley FINALLY has met another mama and child with SMA in person, who "gets it." Kelly has been walking this journey for 8 years.

Little mama and her precious boy.

Miracle #3:  There was supposed to be a Golf Tournament Fundraiser for our little man in June, but it was cancelled because they started it way too late. In the meantime, BJ (my son) & I had decided to try to have one in the Bay Area, where we are all originally from. We couldn't find anywhere to have it that didn't charge a fortune, when we heard from our old neighbors (Kathy & Steve Bergstad) who offered to let us have it at their restaurant in Danville, The Great Impasta. Not only are they letting us have it there, but they are only charging us their cost so we can make sure this is a success!!! They are WONDERFUL, AMAZING, GENEROUS, LOVING friends of my family, and want to help. We have been receiving unbelievable donations from businesses and individuals that don't even know us, along with some amazing donations from some generous friends. The fundraiser is this Saturday, and I will let you know the outcome!!!!

The shirts we'll be selling at the fundraiser.

Miracle #4:  Last year, the volunteer fire departments in the Reno area held a spaghetti feed fundraiser for Charleston. This year they're doing it again!!!!! And they have set a goal of raising $30,000 for our little boy!!!! On top of raising money for Charleston himself, they understand the importance of funding a treatment for kids with SMA.....gene therapy. There is a foundation that we have signed up to raise $10,000 for, Sophia's Cure, to help fund the Ohio State University Gene Therapy Program for SMA. Collectively, SMA families need to raise $1,000,000 this YEAR in order to get the program to the 1st clinical trial level at the FDA. WE ARE DETERMINED!!!! So the fire departments have set up an additional way to raise that money, which won't affect the fundraising for Charleston himself. They are selling luminaries that will be lit at sunset in honor of Charleston or any other child with SMA. How amazing is that?????  (If you'd like to sponsor Charleston in that luminary walk, you can just click on the link to Sophia's Cure above. The cost is $10.00.)

Daddy took this picture of them sleeping. Notice where his hand is :)

Miracle #5: When my kids were 3 & 6, I became a single parent. We were blessed with finding a wonderful young lady, Stella, who came to live with our family from Germany. We have been friends ever since, and she is now a successful clothing designer in Berkeley, as well as a wife and mother. Stella held a fundraising event at her boutique, and raised a bunch of money for Charleston!!!! Thank you thank you thank you Stella! We love you!!!

Stella and I at her fundraiser for baby boy.

Miracle #6:  And the most important miracle of all --- Charleston is GREAT!!!! He is thriving, healthy, and happy. Because the weather has been good, we are getting him out for "field trips" and introducing him to the outside world. HE LOVES IT!!! Some of our trips have been to the park, to an outdoor shopping area to feed the ducks and go on a kiddie ride, a book store, Target, and the Oakland Marina. It's so much fun to see him take it all in, and it's amazing to be able to share these experiences with him. TAKE THAT DOCTORS!!!!

Feeding the ducks at Blackhawk.

Charleston watching the ducks.

Little mama trying to catch a baby duck!!!! No luck, but it sure was fun for me to watch!

Ashley and Charleston on his first kiddie ride!!!!!

Charleston holding mama's soda.

I am the luckiest grandma on the face of the earth. Because I am Charleston's nana. He's amazing.

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 !!!!!!