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.

Happy Easter - or NOT

Today is Easter. And we are all alone, in our own houses. And it SUCKS. So we're going to pretend it's not, and celebrate it later in the week!!!!

It's also my birthday weekend and I've been enjoying every minute of it. Except today. It started on Friday when Ashley & I packed a picnic, packed up baby boy, and headed for the lake at UNR. We also brought bread --- to feed the ducks, even though there were signs everywhere that said "DO NOT FEED THE DUCKS." That day, we felt that rule was meant for breaking and totally wasn't meant for us.

Since before Charleston was born, I've wanted to feed the ducks with him. That's all I wanted for my birthday this year. They've been on "lockdown" for almost 6 months, and we broke that rule on Friday for nana's birthday!!!! We had an absolute blast. Charleston loved it, staring and staring more at the ducks eating the bread that he and little mama threw to them. They even came up to his stroller on our way out so he got to see them close up!!!! I got pictures, but they're on my camera at Ashley's house, so I'll post them later this week. It was amazing to see Charleston study the ducks and make his sounds that told us he was having fun. But even more amazing and beautiful for me, was to see my daughter and the joy in her eyes. She didn't stop smiling; she laughed out loud; she was filled with happiness and was having a blast!!!! It's been a long, long, llllllllooooooooooonnnnnnnnngggggggggggg time since I've seen that, and it filled my heart. We didn't think we'd ever get to feed the ducks with him. We didn't think we'd get to have a picnic like that. And I certainly didn't think I'd get to celebrate this birthday with him. It was was simply amazing and we made a memory that I'll never ever ever forget.

Friday afternoon my son, BJ, drove up for the weekend!!!! We had a blast, but there was certainly something missing.......and that was Ashley. Friday we walked to my local wine bar and he **made** me drink two martinis (oh, so yummy). Then we came home and fixed dinner and visited. I never get to do that with him anymore, and it was wonderful. Just me and my boy. But not Ashley.

Saturday he studied, but then took me to Home Depot and bought me shelving and organizational stuff for my garage that he would only think about (since he's a guy & I'm not)........came home & he put it all up! I have a project ahead of me, but I sure appreciated him doing it. Ashley gave me a toolbox with pink tools!!!! Woohooooooooooooo I'm set. Then last night, he and I dropped dinner off to Ash & Cam, then went to dinner ourselves and had massages afterwards. Awesome.

But then this morning came, and he had to leave. Cry, cry, cry, after I closed the door behind him. Because here's the part that SUCKS. Because he's been around germs this past week, he brought them here. So now I can't be around the baby for several days for fear of bringing the germs to him. So now I'm alone for Easter and my birthday tomorrow, and Ashley and Cash are alone at their house for Easter because Cameron is working. But I wouldn't trade this weekend for anything, because I got to spend time with my boy who I love with all my heart. Really good time. Talks. Tears. Laughter. And it was good. But this is life with SMA.

I hate SMA. So Happy Easter to all of you out there that are celebrating. Me? I'm headed for the garage to put things on my new shelves!!!! And our Easter will be next week, and that's ok. Cuz I got to spend time with my boy, and that doesn't happen very often.