Eyes Are the Windows to the Soul

I am so lucky to get to look into these eyes almost every single day. My Charleston loves me just as much as I love him. He tells me that by looking deep into my soul. I live for those moments. They make my heart happy. I'm the luckiest nana alive, to have a precious boy like him to love.

BIG NEWS!!!!

Charleston got his power chair!!!!!! I wanted to add a video of him driving it for you, but they're all sideways on my computer & I can't figure out how to fix that. I'll work on that!!! He is able to drive it with the use of his pointer finger on his left hand. It's amazing!!!! He's learning how to steer it daily, and once he's ready, we'll hit the streets!!!

Ashley was finally able to get a trial approved for a Tobii Eye Gaze System!!!! Because Charleston is hard to understand, this will become his communication device. He controls it with his eyes.  He's figured out how to tell his mama when he needs a diaper changed. He's also figured out how to get to the games :).

We are finally getting close to lockdown season being over. Yippeeeee!!!!! I'm hoping we get to celebrate my birthday this year feeding the ducks, as we did last year. I think it's a great annual tradition. Ashley can't wait to go shopping :). I think she's earned a shopping spree with me.

We received two amazing phone calls last week. The first was from A Sweet Affair Bakery in Walnut Creek. Last year when I was planning the 1st Annual Hope for Charleston Pasta Feed in Danville, I sent a letter to them asking for a donation. Not only did they donate, but ever since then, they collect donations in jars by their cash registers for our Charleston. I cannot begin to tell you the difference that they make in Charleston's life. Because of them, we are able to provide Charleston with things we never would be able to (example: his power chair!!!!!). The owner's name is Terry Babcock, and his daughters are Sarah & Jennifer. If you are ever in their area, please go in to their bakery, spend a bunch of money and thank them!!!! They are an amazing family to do this, especially when they had never heard of us before my letter went to them.

The second phone call was from the Volunteer Fire Departments in Reno. As you all know, we had to leave Reno last summer to get to a lower elevation for Charleston. The fire departments up there have done two fundraisers for our Charleston, and we assumed they were over with. NOPE!!!! They are going to do another one this summer!!!!! WOOHOOOOOOOO!!!!!!!! I'll let you know details when I get them.

Last, but not least, is that our Hope for Charleston 2nd Annual Pasta Feed has been scheduled!!!! It is on Saturday, July 21st, at The Great Impasta in Danville, CA. You can click on the link above for details, to purchase tickets, or to donate items for the silent auction/raffle. We're so excited!!!! As Charleston grows, his needs change. What a great problem to have!!!!! This year, we are not only trying to raise money for him, but also for research. We have teamed up with Sophia's Cure, and will be contributing to gene therapy research through them.

Guess what!!!! Charleston is going to be in my son's wedding!!!! BJ & Catie are getting married in September, and my grandson gets to be in it. I can't stand it. We already bought him a tux!!!!

Life is good with my Charleston. He loves Barney, has discovered earphones with my ipod (which has now turned into his ipod), loves driving his power chair, and even will sit through an entire full-length movie as long as I am rubbing his feet and hands with lotion. He thinks he's doing me a favor!!!! HA!!!! It's my favorite time of day, to get to rub on him. OMG I LOVE THIS BABY!!!!!

It's Not Funny, Nana

Enjoying My Charleston

All good things are happening!!!! Let me catch you up on my Charleston.

Christmas. Oh my gosh!!!!! It was A.M.A.Z.I.N.G. We had a small celebration at home, since it's the middle of "lock down", that included Charleston, Ashley, Cameron, GiGi (Cameron's dad), Blake (Cameron's cousin), and me. Good food, lots of presents for the little man, and the best part ---- HE CALLED ME NANA!!!!! I had only heard it once before, and believe it or not, it was the previous Christmas. He worked so hard to say it this time.....but it came across his sweet little lips and was the best gift EVER. I love this little boy.

Santa Claus made a visit to Charleston's house!!!! SANTA CLAUS!!!!

Check out his eyes looking at Santa!

Charleston was so excited for Christmas! He knew it was a special day. We told him it was Jesus' birthday, but that he got to have tons of presents.

He always helps me cook. He's the best helper in the world, because he puts the love into everything we make, and he knows that's what's the most important ingredient. We had fun making Christmas dinner together.

                                                   He got some lovin' from mama and dada.

               

Daddy got him a boat to drive at the park!!!!!

While we were celebrating in Turlock, Unkie B & Auntie Catie were suffering through Christmas in Cancun!!!!! They had a great week with BJ's future in-laws.

 Since Christmas, Daddy and Charleston have been having fun at the park driving their boat together. We've had some good weather, so Charleston has been able to be outside a lot more, as long as we don't get around any other people.

Nana got a new bike, and Charleston liked sitting on it! His favorite thing was the bell.....so he now is the proud owner of a bell on his stroller that announces his arrival everywhere we go!

Being goofy.

Since Christmas, we've been trying to get a power chair and a Tobii Eye Gaze System for Charleston. Both were initially denied, but we're not letting that stop us. Amazingly, Ashley found a BRAND NEW power chair on craigslist!!!! We are in the process of having it modified for Charleston, and soon you will get to view a video of our little boy driving!!!!! It's going to open the world up to him so much. It will enable him to have a sense of independence that he hasn't had. We can't wait!!!!

The Tobii Eye Gaze System is incredible. Because Charleston can't verbalize very well, this machine will be his communication with the outside world. It actually reads his eyes - he will focus on the screen, and it will not only speak for him, but will be his gateway to school & the internet once he's older. We've gotten some advice (thank you Clif Black!) on how to go about trying to get it approved, and are working through "the system." It's so frustrating to have to fight so hard for every single thing, but we won't stop until he has it.

We are enjoying living in Turlock, and have a wonderful support team here. It's great to be surrounded by family. The weather is much milder here, so we are able to take him out for walks quite often. Cameron is great about getting them out of the house, even if it's just for a car ride. 

I am working on two fundraisers, so details will be coming out soon for those. Without everyone's help, we could never get through this on our own. Thank you so much; Charleston is a happy, thriving two year old, and we never thought we would see that. We are blessed. I'm the luckiest nana on the planet.

Santa's Coming to Town!!!!

In the town that we live in (Turlock, CA), Santa Claus arrives on a fire truck. The firefighters drive him around every evening and stop at certain spots so children can see him. When Santa found out about Turlock's new resident, Charleston, he decided to make a special stop just to meet him, so other people wouldn't be around, and Charleston could have his own time with Santa. I love this town!!!

Happy Birthday, Baby Boy

Two years ago today, I woke up early and headed for Tahoe Forest Hospital, knowing that I was going to meet my grandson for the first time. Two years ago today, I fell in love with a little boy named Charleston.

Today, I am thankful...

• for the people that have helped us on our journey
• for the doctors who are spending their lives trying to find a cure
• for our friends that have attended and sponsored fundraisers so that we are able to get the things we need for this precious baby
• for the strangers that have learned about Charleston, and truly care about him
• for the other SMA families that share our journey in their own homes
• for the State of California, and the wonderful benefits they provide
• for God choosing us to love an angel on earth
• for Ashley & Cameron both being in the medical field
• for Charleston's sense of humor
• for Mickey Mouse & Barney....and balloons
• for my daughter's devotion to him
• for my son holding me up when I need it

When I dreamed about being a nana, I never thought it would be this good. Today we celebrate my Charleston's 2nd birthday. He is in the 10% of children born with SMA that survive until they are two. WE MADE IT. 

I am in love with a little boy named Charleston. Happy birthday, baby boy.

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.