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!

Does it get easier...

People ask sometimes if it gets easier..missing Grace that is...here are some random thoughts on that...Easier to cope...yes, it gets easier. I wouldn't use the word better, but easier. You never get over it and you shouldn't. It's your child, part of you. A piece of you is missing...gone forever. I like the saying "The heart is the only broken instrument that still works"...or something like that. So true. How can it break over and over and still go on pumping. Even days when you don't think you can move, get out of bed, open your eyes..there it is pumping away. I think of it as a hole in my heart. Somedays that hole is small and I think of her some and I smile and it's ok. Other days the hole engulfs my whole heart and she's all I can think about and have a day of tears and memories. I think about her every day. I miss her every day. Some days are harder than others. My friends/family have learned...all I have to say is I'm having a Grace moment or a Grace day and they understand. Slowly you start to smile again and more and laugh more and have a good time and you don't feel as guilty about it. It's of course extra large around holidays. Having Camden has helped because I can't feel sorry for myself or get engulfed in that huge hole all day long. He needs me. And I need him. But I still make time. I went by her grave the other day and had a good cry. I was pregnant with 5 of my friends at the same time - so the kids are around the same age. One of them especially we did a lot of stuff together and pictures regularly...so it hurts to see thier kids - I mean it's good, I love seeing them and love them all..but it's very bittersweet..she is missing from the picture - from the events...from life. Last year I almost lost it when the kindergardeners walked in for class b/c she woulda been in kinder. It helps sometimes to talk to other people that have lost kids. To know you're not alone. You're not completely crazy. Everything you feel is "normal". Love, pain, guilt, anger, relief, sadness, confusion, guilt, resentment, guilt, frustration...it's all ok and "normal" Someone told us that when people ask...and it's people that don't really want the real answer...or you don't feel like giving them the real answer...just answer FINE. I don't remember exactly what they all stand for, but what I remember and think of is Frazzled, Insane, Neurotic, Emotionally Exhausted (or even just exhausted) - FINE. So true. So in a long round about way...the short answer is yes, it gets easier. Never better and never goes away and it shouldn't. And at the same time nobody should have to feel what we feel. To lose what we have lost. Nobody.

Random collection of thoughts

April...can't believe it's April. This year is flying by. Camden is amazing as usual! He loves baseball. That and Toy Story (1,2 or 3) occupy him pretty much 24/7. He is playing T-ball and already looks like a pro ;) So focused and excited. It was too cute the other day b/c we had practice right after school so I took his clothes to change into. We were walking to the room and he said he needed his baseball shoes. I told him I had them and he asked "at school?" Yup. His response? "Yay, woo hoo, awesome!" As he clapped his hands. Way too cute!!! Wish I had been taping it. He is doing great at school - always wanting to help and please his teachers. He can spell his name and is learning to write it. He also loves UT - and has been to a UT football game, UT basketball game and UT baseball game. He is a true blessing and I am thankful everyday for him!!!!
Keven is doing well. Started a new job at HP and liking it. He stays pretty busy between that and keeping up with Camden's t-ball.
One of my half time positions was eliminated so I currently have only a half time position. I'm not overly concerned about it although I guess I should be. I would love to work only half time so I could focus more on SMA stuff and maybe get caught up on everything around the house and stuff...And maybe have another little one around to take care of.
We are still trying to adopt. I'm so more than ready! I'm trying to trust what's meant to be will be...but it's hard. And I've always felt you have to try and help yourself - not just sit around and wait for stuff to happen. But I'm starting to wonder if that's what I'm supposed to do. Sit around and wait. I feel like I get signs but I'm not sure which way to read them...or if it's all in my imagination. I just don't know. I did get a sign from Grace on Tuesday. That was nice. I was at dinner with friends and had been there for about an hour...and I look over and right next to me is a sticker of Boots. I had looked over there several times during the evening and never noticed it. And there it was. After we had been talking about adoption and kids. I know it was a sign from her. Other signs I've gotten this week are mostly that I can't control and plan everything. I learned that with Grace. Guess I needed some reminding. There was a lot going on this week, a lot planned...and a lot that didn't go as planned. So, I know I can't control stuff...but does that mean to not try and plan stuff? Not to try and do anything? Just to let it all go? Or can I still try and do stuff but just remember that it's not up to me...I just don't know....What I do know is...something needs to change...I don't know which sign I'm supposed to read or follow or what I'm supposed to get from it or do with it...but something needs to change...

A New Year

I sure don't stay on top of posting on this thing. I mean to...to put stories of Camden for Camden...a place for me to share and let out emotions...but I just never seem to. I'm missing my girl tonight though so felt the need to come here. I miss her every night of course but feeling it a lot tonight. Just miss her. Still have regrets....guilt....anger....jealousy....not understanding....but I do have happy memories and love her with all my heart and miss her like crazy! Camden is growing up wonderfully and knows exactly who she is. I know he doesn't understand it per se, but he knows who she is.
Camden is amazing. So smart. So funny. Very caring and helpful. We have truly been blessed with 2 amazing children. He still loves baseball and is all signed up for T-ball starting in March. See, then I get on here and can't remember all his great stories. His favorite songs right now are Bad Romance by Lady Gaga, I Gotta Feeling by Black Eyed Peas and then several Christmas songs - Rudolph, Santa Claus is coming to town, Jingle Bells...and as we've been listening to the music for my latest show at school he's really enjoying it too. He loves music - to sing, to dance, to play...He started going to school with me in November and is doing wonderfully there and enjoying it. Everyone knows who he is and he always has a smile on his face.
We are still working on adoption...or rather waiting on it...We have done all required things and just waiting to be matched with our child. Camden is going to be such a great big brother. He loves to help, especially other children.
As usual a pretty short post...just mostly missing my girl...I need to watch some video of her but I know it'll start a crying frenzy...so I have to be sure there's nothing else I need to do for several hours after before I watch.
Hope everyone's 2011 is off to a good start!

Strike 1

I really need to do a nice, long update. More so I remember all the cute things Camden does, than any other reason. But here's a video of baseball - still his favorite sport. He can't wait to start T-ball in the spring!