Happy Thanksgiving

Today I am thankful for my family. Not just relatives, but our friends that have become our family over this journey with our Charleston. Life long friends, new friends, and our SMA family that help us get through our day to day life.

I am thankful that doctors can be idiots sometimes!!!! Because that way, we get to prove them wrong....by having my Charleston at another Thanksgiving dinner.

I'm thankful that he has the power to get a 200 pound man to dress up in public as Buzz Lightyear.

Today we will celebrate, like everyone else in our country. But our celebration is a little bit different. Instead of taking our turkey dinner for granted........we are grateful for a little 23 3/4 month little 19 pound boy......that is the strongest person I've ever met, and what he is bringing to our lives.

Charleston, you have brought me more love than I've ever received.........I treasure your butterfly kisses............and I treasure what you are teaching my little family. I love how your parents love you and protect you; I love how your Unkie B & Auntie Catie love you; I love that Great Nana is putting up with a 10 day visit so she can get to know you. You are the love of my life, in a way that I never knew I'd feel. I love you, little boy.

Where Have We BEEN????

I know we've been "missing" for the last 3 months. LOTS of changes have been happening, so the blogging had to be ignored for a bit. But I'm back to catch everyone up!

Most importantly, Charleston is doing FANTASTIC!!!! We are counting down to his 2nd birthday, which is December 1st (more on that later). He is happy, healthy, smart, and thriving.

For those of you that don't know, we have relocated to the Central Valley of California, to a town named Turlock. The specialists at Stanford told Ashley & Cameron that they needed to get Charleston to a lower altitude to enable him to breathe easier. The first thing we did was get them situated at Gigi Greg Goeppert's home in Concord, where they stayed most of the summer. Cameron continued working his job in Reno, commuting between both places until he was able to get a paramedic job in Turlock.  (On a side note, this is where my mom was born and raised, and I have family still here!) Once Cameron got hired, they found a home to rent, and Cameron moved them here. Then I got busy and found a great tenant for my home in Reno, my dear friend Linda Moldovan helped me pack, my son & his fiance flew up to Reno and moved me to Turlock! I now have all my things in storage and am staying with one of my cousins and her hubby, Shane and Sherry. We LOVE it here, and it's been a wonderful change for all of us, especially our Charleston.

Ashley & Cameron have been able to take our little man on a couple of outings!!!! I'm so happy to see them "living" once again, and getting out of the house to show him the world. One of their first outings was to Pacific Grove & Monterey. They took Charleston to the beach that they were married so he could see it! They also took him to Yosemite for a day. He loves to go in his "rocket" (van) because he knows he's getting to do something fun.

You know us and projects! Charleston and I love to decorate cookies together, so this was one of our projects getting ready for Halloween. That's a big day for a toddler and we wanted him to get excited about it!

Little mama and daddy took Charleston to a pumpkin patch! 

 

Then he got to get ooey gooey!!!! Check out the look on his face :)

He even got to paint one!

This is all I have time to catch you up on today, but there's more to come!!!! Like.......our latest gardening project......and HALLOWEEN!!!!! Until later.......this nana is the happiest she's been in a lllllooooooonnnnnnnngggggg time.

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!!!!!