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.

A Dark Day....and then some giggles from my Charleston

Yesterday I had a dark day. I have those now and then. A day when I wake up with a heavy heart. A day when I cry over everything, but really, it's over my Charleston. A day when I grieve for the life that I thought my daughter would be living, but isn't. A day when I think of what I thought what being a grandma would be....but isn't. A day when I feel very, very alone, and very, very sad.

I looked at pictures of my Charleston on my computer and found the ones I took the day he was diagnosed with SMA. I looked at the pictures of the day he was born. And I wondered why. WHY??????

I spent the morning with my girlfriend Sandy, and she was able to make me smile & be giggly. That felt good. But inside I was crying.

So I was pretty pathetic, and couldn't pull myself out. When I got home, I let myself cry.....cuz sometimes, ya know, you just need to do that. 

We have been very worried about Charleston being bi-pap dependent. What does that mean? In the SMA world, it means the disease is progressing. It means he can't breath on his own without it. It means we won't get to look at his sweet face without a machine on it. It means it's another step closer to Ashley and Cameron having to make a choice to trache this precious baby boy. It means that my daughter is sad, and worried. Like she doesn't have enough to worry about already. It means I don't know what to say....because I've never been in this situation before. It just sucks.

But then two wonderful things happened. First of all, Ashley got through to Charleston's pulmonologist at Stanford (a feat in itself) and talked to her about it. The doctor asked a lot of questions about him...and then Ashley heard the wonderful news that our little baby is NOT bi-pap dependent!!!!! Thank you Jesus!!!!! Charleston recently got a new piece of equipment, called a Trilogy, which is a fancy bi-pap. And he just likes it. It makes it easier for him to breathe, and makes suctioning much less frequent......so he's happy on it. And that's what we want, a happy baby boy. And what I want is a less-stressed out daughter, and that's what I have now. So when she told me the news, what did I do???? Jump for joy???? No, I cried. Man.

Then the second thing happened. I received a message from a young woman, who used to be a young girl (duh.....). The reason I say this, is that I haven't seen her since she was a young girl. She is the niece of a friend, and she grew up to be an attorney, with a husband and 4 small children, two of them being my Charleston's age. We re-connected over facebook (thank you Mark Zuckerburg!!!!). Unknown to me, she has been following Charleston's journey, and it has touched her. She recently read a book called "Monday Matters" and decided to take herself on a personal journey of making a difference to someone each Monday. And she decided to make a difference to us first. She could not have reached out to me on a better day. She wants to learn about SMA; she wants to help us get the word out and educate others; she just wants to help. Do you know what this meant to me yesterday? It meant that there are people out there that do care...that do want to help...that aren't afraid to get involved. She's not scared to meet my Charleston, like other people are. See, we have "close" friends and family that haven't even reached out. And that just plain hurts. But this young lady MADE A DIFFERENCE to my little family yesterday. She made us feel not so alone. Those not affected by SMA.....you have no idea what the loneliness feels like. To our SMA families....you get it. So thank you, Jennifer. Thank you for your message, thank you for the phone call......and sorry I cried!!!!! It was just my day to lose it.

And then, last night when I got into bed......so thankful that my day was over.....I got this video of my Charleston laughing. And I went to bed last night feeling good about my day. Someone made a difference by reaching out when I least expected it, and my Charleston's daddy made him laugh. And I'm okay now.

Diagnosis Day Anniversary

March 15, 2010. A year ago today, our world fell out from under us. "Spinal Muscular Atrophy, Type 1." "Take your baby home and love him. There is nothing we can do." This video was taped on the way to the doctor's office that day.

NO!!!!!!!!!!!!!!!!!

We did take him home, and we do love him. But there are LOADS of things we can do, and have done, and will do. First of all, we grieved. We threw up. We cried. We begged. We wondered WHY???? Why HIM???? Why us????? We closed ourselves off to most everyone. And we researched.

First, we found Families of Spinal Muscular Atrophy. They immediately sent us information on SMA and a big, giant goody box for Charleston, full of toys that he could play with and other things we could use for him. Then we found a community support group that has helped us save his life: SmaSpace. It is a site for parents, family members, caregivers and friends to communicate with each other. This site is where we found out that SMA does NOT have to be a death sentence!!!! It gave us hope. Another huge source of information and support has been Facebook. We've met so many other families with babies with SMA, and they have become dear friends of ours, since many of our "real friends" have disappeared. Through SMASpace and Facebook, we have met the Gaynor family, who have started a foundation in honor of their beautiful daughter Sophia, who also has SMA Type 1.  Sophia's Cure does many wonderful things for our community, from giving us information in a way that we can understand it, to introducing us to the leading research & the doctor that's heading it (go Dr. Kaspar!!!!), and also fundraiser for not only the gene therapy program under Dr. Kaspar, but also for iPads for SMA kids!!!! They are an amazing family and we consider them members of ours now. Ashley has also made a new "best friend", Kristin Banjany, mama of SMA kiddo Nathan. Kristin, I cannot thank you enough for being there for my daughter through the thick and thin of SMA. You have made a difference in her journey.

This year has brought lots of tears and heartache, but also lots of smiles and joy. We laugh with this precious baby boy each and every day. His smile and his voice melt my heart. When he looks at me I feel like he can see my soul. He makes me a better person.

In the last year, we have discovered that there is a treatment right around the corner. It's gene therapy, and it will enable me to keep my grandson. It's thisclose to beginning the first clinical trial at the FDA, but of course, we need funding in order to get it there in time for our little boy. This is where you can help. Sophia's Cure has started a HUGE fundraiser, called "The 200 Commitments" The goal is to raise $1,000,000 to fund the first clinical trial. If you break it down to one $5,000 fundraising commitment for 200 people, it becomes attainable. So far, Ashley & I have a total of 5 people signed up (including both of us). You have a year to raise the money. You can do bake sales, car washes, spaghetti feeds, craft fairs, running/biking marathons, art shows, ANYTHING!!!! Be creative, but be persistent.

WE NEED HELP. 

WE CANNOT DO THIS ALONE.

I have learned this year that I am not afraid to ask for help. I am asking each and every one of you to help me save the life of my grandson. This will make the difference.