There's no crying at Disney!

I wish I could say that was because of Camden, but it was me. I was missing Grace. We didnt get to take her to Disney. She would have loved it. Not that the girl didn't get to travel. She went more places in 2 years than a lot of people do in 20. She went to Houston, Dallas, San Antonio, Salt Lake City, New York, Seattle, and San Diego. We were determined for her to experience as much as she could. And she did. Except Disney. Hopefully she was there with us today.
It probably didn't help that we went to another grief session today. It was good, it's just always tough. Met some more families. Keven went back in the afternoon for the last grief session. I forced Camden to nap. So glad I did! :)
I guess Grace was watching out for us. It started raining right after the last session ended. Right when it was about time to head to Disney. But by the time we got done talking to people, waiting for the bus and riding over there it stopped raining. Timing was practically perfect. I like to think Grace and the other SMA Angels had something to do with that. Wanted all the kids and families enjoy their evening :) But we walked in and a Grace wave hit me. It didn't help that we were watching Mickeys Dreams do come true musical thing. Singing all about love, keeping dreams in your heart alive, dreams do come true. Just added to the pain. I know how blessed we were/are. I know we had her with us longer than we were supposed to and a lot longer than a lot of other families. But it still sucks and hurts and is unfair!
Camden had a lot of fun. He met Mickey, Minnie and Buzz. He rode Buzz Lightyears ride, the race cars, the tea cups and Winnie the pooh. He did so well! He got scared a couple of times - when the mean witch came out in stage and when they were doing a night show and it was loud and dark. But he did well. As soon as we got off the bus at the hotel he said "that was fun! I saw Mickey and Minnie and buzz! I got to shoot burg. Mickeys castle was fun!". So I guess he enjoyed it ;). And yes, sorry to disappoint but it's Mickeys castle not Cinderellas. And Mickey and goofy and Donald and everyone lives there!
We ran into several families there. One we hadn't met before but I had to talk to them because their daughter reminded me so much of Grace. Strength wise. A lot of the same control and same size. She was cute. Her mom was very nice. I always feel badly though when I talk to other SMA parents and talk about Grace. I can only imagine what is going thru their head. I mean the stupid path I was sent down might someday be their path. I hope not but I am a reality of the disease. So I feel badly talking to them and the idea of children passing. I hope I don't upset them too much.
That was something interesting that came up in the grief. What do we say when we asked how many kids we have. This was a tricky one for me for awhile. Because a lot of times it makes the other person feel uncomfortable. Makes them sad or makes them feel sorry for me. But 2 things happened and it's not hard any more. One being that I got over how they felt. I'm not telling them to upset them. I'm not telling them for sympathy. I'm telling them because they asked an I do have a daughter. Now it doesn't always come up that she's passed. Just depends on how the conversation goes. The other thing being that one time when asked I said just Camden. And I felt so guilty about it for so long. Like I had betrayed her. So it's easy for me to say 2 kids!
Well this has been a very scattered post but all in all a good day. As long as there's no crying at Disney!

Up, down and all around

What a roller coaster of days we've had. Good ones though. Thursday was good. Meetings in the AM with some good info and met some new people. Then my boys got here and that helped a lot. :) Thursday night was fun because it was our carnival with lots of junk food, games and of course Mickey, Minnie, Donald and Daisy. Camden did awesome with them and gave them hugs and high fives and had a lot of fun. Then walked around the Boardwalk some and visited with friends.
Today was a bit more emotional but good. They had a beautiful breakfast laid out near the pool and water. Then general session which was a lot of what I heard yesterday and then to a grief session. Hence the down. It was good though. It's always nice to be around other people that "get it". Not that we want other people to get it. Nobody should ever have to bury a child. It's just not right or fair. It's also nice because there were people there in all different stages of grief. Some that lost children over a decade ago, some a year ago and some a month ago. I was very impressed with that couple. For being here that is amazing to me. They got their sons diagnosis when he was 10 weeks old. He passed away at 13 weeks. That was a month ago. They hang even been able to absorb the shock and pain of the diagnosis before he was gone. I admire them greatly for being here. Lots of memories?
Crests and laughter were shared. Picking up Camden from the kids room helped. :)
Then we went back up as we headed to downtown Disney. Lots of shops and just cool stuff to see. We tried to eat at T-Rex restaurant - it's like Rainforest Cafe but prehistoric. Camden screamed on the way to the table though and couldn't stop crying because he was scared. So we left. He an Keven built a car. leven was a little bummed because he couldn't talk Camden out of Lightning McQueen. And we are too cheap to make it a remote control car. So he has to paidh around. They still had fun though.
Then we headed to Wpcot to hang out for a bit before our special dessert buffet and our special seats for the firework and laser show. Unfortunately that's when it decided to Rain. So we didn't make it around Epcot. All Camo wanted to see wa the big ball and we didn't. We wnt to the UK because it started pouring again and then ran in the rain to where they had moved our went. And missed the fireworks because of the rain. So Epcot was a bit of a bummer. Maybe tomorrow will go better. Although Camo did see Pooh and Tigher and hugged them both an Eskimo kisses. He said they were soft and liked them. :)
Tomorrow we have some more grief sessions and them hit a different park.
Sorry if there are typos - I'm typing on my phone and cAnt see everything I'm typing. We did meet another family that is stationed in England. They have a 4 year old that was recently diagnosed with type 3. She and Camden had a lot of dun together. He ha fun even though soaking wet. So far so good. Now ifthe rain will go over to Texas that would be great! People from here say they need the rain. Nah. They don't really. Not like we do. At least not until next Wednesday ;)

What was I thinking?!

What was I thinking? Coming to Florida to the SMA conference. Actually, I know what I was thinking. I was thinking I get to see all these friends, no my family, that I haven't seen in years. I was thinking my SMA family that knew Grace will get to meet Camden. I can be more involved with FSMA and try to strengthen the Texas Chapter. I was thinking I can meet a bunch of people Ive only met online. A family vacation that lasts more than 2 days and not in the car for the majority of that. Camden can meet Buzz and Woody. Disneyworld. I was thinking the happiest place on earth!
But the issue is what I wasn't thinking. I wasn't thinking about how hard this would be. How emotional it will be. I wasn't thinking about seeing all these children zooming around in their chairs like Grace should be. How so many of them remind me of her because all children with SMA just have that special quality to them. I wasn't thinking about seeing kids that met Grace and are so grown up now. About reading and listening to all the research which is great but also so frustrating. And then trying to absorb all that while missing my girl. I wasn't thinking about how big of a hole would be here without my girl with me.
So maybe sometimes it's good not to think? I'm glad I'm here. I'm glad I came. Tomorrow will be a full day of convention and it's going to be so wonderful and so hard. Why do it? I know a lot of people fade away after they lose their child. But I stay involved because we need a cure. No other family needs to feel the pain.
I know we will have a great time. And I know Grace will be here with us. I just hope she sends us some signs.
What was I thinking? I was thinking I love my daughter and my son and this trip is for both of ten!