From a book I'm reading. It's talking about God's Grace, but it fits my Grace too (who is also God's Grace) - "Grace is the delivery of a jewel that nobody ordered, a burst of light in a room where everyone forgot it was dark."


5 years ago today my Angel returned to Heaven. I’m so thankful I had her as longs as I did. But miss her like crazy. Just as much today as ever. I’ve been reading old entries of mine and they still hold so true. The dates could easily be changed for today’s date and 5 years. So instead of writing it all again here’s a few old posts that are so true! Don’t want to read it all? The bottom line is I love Grace, am thankful for her and miss her! Also very thankful to have her little brother here with us. He too is Amazing!

Thursday, September 14, 2006

Four weeks. Four weeks. Can't believe it's been four weeks. Sometimes it seems already four weeks and other times like only four weeks. I just can't believe that four weeks ago today you left us. You were so excited that morning when you woke up. I told you we were going to see Hannah. You were excited. You couldn't wait to go...kept saying bye so we would leave. You spilled your football juice on the floor but I knew before I handed you the cup that you would. :) I miss you so much. I still feel so much guilt and coulda, woulda's....I would do anything for you..even now...I wish I could turn back time...If I could just have that one day to do over again I would do it differently. I love you so much. When you left so did my heart and soul. I know you have lots of friends and family up there. I'm sure you and Sister Mac are having a great time, eating lots of ice cream and going on walks. But it sure is hard for us down here. You will always be my baby girl. I LOVE YOU!!

Tuesday, October 17, 2006

Two months. Two months today. Part of me feels like that was just yesterday and part of me feels like it was a lifetime ago. I guess it's both. It was definitely a different lifetime. It's not the same any more. Never will be again. Nothing has gotten easier. We miss you and love you so much. Pop and I are hanging in there. Thank goodness we have each other. We are blessed to have all the other friends and family we have too, but thank goodness we have each other. I love you sunshine. Always have, always will. Butterfly Kisses up to Heaven for you!!!

Friday, October 27, 2006

The fog still hasn't lifted. I move, I walk, I talk, but it is all automatic. There is little feeling. Sometimes the fog lifts and the feelings rush in. Then, all I can do is cry. It seems the only time I am real, reacting honestly, without guarding every word or look, I start to cry. When the fog lifts for a brief moment, it's as though someone just kicked me in the stomach. As I am reeling with the pain, my mind registers the core prevailing thought: Grace is gone. Grace is gone. When I can't stand the pain anymore, my mind goes back into neutral, back into the fog.

Friday, December 29, 2006

I just don't understand. It's just all so unfair. Why can mean, bad, corrupt, murderous people live for years and decades...and precious innocent Angels...you, Morgan, Kaitlin, Cole, Nathan, Sydney, Braden.. and so many more...are taken way too soon! It's just not fair and I don't understand! What I do know is I love you and miss you. You were amazing from the day we knew you were to be part of our lives. You changed us forever and will never be forgotten. I wish I could hold you again. I hope you are up there picking out the perfect little brother or sister for yourself. Nobody can ever replace you but hopefully we can share our love with another little one. Please tell them all about everyone down here and how much they are loved already. Tell them to call us Ada and Pop...and that their first word should be Poop :) I hope you are eating tons of mashed potatoes, ice cream, chocolate and juice. I hope you are happy. I love you and I miss you!

Saturday, January 13, 2007

I miss you so much. I hurt so much. I just want to hold you and kiss you. I want you to pull my hair and laugh about it. I want you to say "poop". You were the most perfect little girl in the world. I just don't understand and it's just not fair. I would do anything in the world for you. I would do anything in the world to be with you again. I love you so much and I miss you so much!

I have so many emotions about all of this. I'm scared to have another baby. I want one like crazy...have since before you were born...but I'm scared. Scared I won't love them enough...that I won't feel the same about them as you....that I will lose them too....that I won't be able to hold onto them because they will have so much strength and wiggle and squirm like you never did....scared that they will have SMA and I will have to lose another precious angel. I'm also scared that this won't work at all and we won't be pregnant. I'm not sure our hearts can handle that. And I don't really want to learn if they can or not. I'm also excited at the thought of having another little one...of having a baby to hold and love...of telling her little brother or sister all about you and how special you are and how lucky they are to have such a wonderful guardian angel as a big sister.

I have been lost since losing you. I was your mother. For once my life had importance and made since. I love being Pop's wife but he can do without me. You couldn't. I love you so much and felt the role of mother was my calling in life. I have felt so useless and not needed and just lost without you. No meaning for me. I'm ready to continue being a mom

August 17, 2011 - we still miss you Angel. I love you as much as ever. Thank you for sending us your wonderful little brother and watching over him so well. He will make you proud I know. I hope we do too. Love you then, now and always!

More Camdenisms and Summer Remorse

I knew I wouldn't remember all of Camden's cute sayings. So here's a few more and a funny story.

Grink = drink

skrike=strike

gump = jump

kips = chips

mazagine = magazine

Top on = on top of. IE: "What's top on the car?"  - What's on top of the car?
Beat up = beat.  IE: eating dinner he finished his food first "Look mom I beat you up"

He is fighting bed time - has been for a few weeks. Just will NOT go to sleep. Tonight's stall tactic - he needs a drink. So he keeps asking for one, no we aren't giving him one and we're doing mostly ignoring. This goes on for quite some time 20/30 minutes. He asks again and Keven tells him "No, b/c if you have a drink now you win and you're not going to win" so of course he says "Yes, I want to win!" Still no drink. So more and more of this whining and wanting a drink and ignoring. Then a bit later "Hey mom? When dad goes to bed can you get me a drink?" :)  Good thing he was in the other room so he didn't see us cracking up laughing. Still not asleep. Still needs a drink. His last try was about 10:15 when he asked if we were going to bed soon and we said yes and he said he'd get a drink after we both went to bed. Hmmmm...we shall see I suppose :)

Summer remorse - kind of like buyers remorse.  Where did this summer go?!!! Why did I not get done a fraction of what I hoped to this summer??!!  I had a good summer. Went on a couple of trips. Spent a lot of time with my wonderful boy, Camden. But that to-do list just didn't get to-done.  That exercise and weight loss never took off. I've enjoyed being lazy and playing way too much. My piles around the house haven't gotten much smaller. I'm not ready to go back to work tomorrow! I'm not ready to wake up to the alarm clock instead of Camden kissing my cheek :)  I'm not ready to be away from my boy for over 9 hours a day.  I know, I'm lucky, I have the summer off (granted any teacher can tell you it's much needed and deserved - for students and teachers alike) But it's so hard to go back. To see all the stuff I didn't get done this summer. I know...negative nancy...cheer up. It'll be fine and good and life goes on. But it just feels like summer remorse and I had to let it out :) 

And since it's now almost 11 PM and my child is STILL up and we do have an early morning tomorrow...guess I better go to bed.

Camdenisms

August Depression has reared its ugly head and completely sunk it’s teeth into me. No good! I just want to crawl into a cave full of chocolate, coke and fried food and drool as I flip channels aimlessly on the TV. So, to try and counteract that I thought I would reflect upon some Camdenisms. :) Things/words Camden says that we love the way he says them. Or little stories that have tickled us. It’ll be good documentation for him too. I’ll start with his word and then translate. :) See how many I can remember.


Flou Ball/Flou tip = Foul Ball/Foul Tip

Nuffin = Nothing

Sumpen = Something

Mr. Kratz = Mr. Pratz

Ms. Alinda = Ms. Melinda

Riv Room = Living Room

Agamas (hard G)= Pajamas

Gen (hard G) = Jen

Driving down the road…”Why does daddy know how to drive fast?” Me “Because he’s a male” Camo “Why is he a male” Me “Because of his chromosomes” Snickering from the back seat – “Chromosomes, that’s a funny word”

Camo “What kind of car does God drive?” Me “I don’t know” Camo “We can just look it up on-line”

He wanted to watch a movie in my car - I don't have a player. He said Marmee has one in her car why I don't have one. I said I'm not as cool as Marmee. He said Is Marmee cool? I said yup. He asked if he was cool. I said yup. He said if he's cool then I should have one in my car for him. Uh oh...

Me: Do you need to go potty before we leave? Camo: Why? Was I doing the potty dance?

At a later date he was moving around and I asked if he needed to go to the bathroom. His response – No, I wasn’t doing the potty dance I was just moving. See I was doing this…the potty dance is like this…

Deep thoughts..."My God made bathrooms all around the world. If 1 is locked we can just go to another. That's awesome".

Miss IncrediGirl = Mrs. Incredible (from the Incredibles)

On a ride at Disney he was standing up. We asked him to sit down and he asked why. Because you need to be safe and have a seat. No, but I just standing up. :) Goober!

He’s been talking a lot about Grace lately and asking lots of questions about her. It’s so bittersweet. I’m glad he is though. He’s been asking a lot about God too. I don’t know if it’s because it’s August so she’s around even more…or if it’s because he’s getting older and trying to understand/comprehend…I think it’s both. He asked the other day what was on top of my leg – I finally figured out he was talking about the knee cap. He asked me why we had those – to help us move our legs. So he started moving his and asked if Grace moved hers too. We’ve talked about her disease and her chair and everything. I told him she tried and she could do it pretty well in the water. He liked that.

Because I had told him God was around us all the time he later asked why God was so big. And was he nice and why is he nice. He’s asked why Grace had a disease, why did she die.

“I love you mom. You’re a good mommy. You’re a cute little girl”

I know he has said a lot more cute things but that’s all I can think of for now. I love that boy. And his big sister too!

I HATE AUGUST

If you haven't heard me say that before, I'm schocked. Because I HATE AUGUST! I know, very negative, and we shouldn't use the word hate and blah blah blah...and there are a lot of wonderful people (including friends and family) that were born in August, so no offense to them, but still...It's hot (hotter this year than ever before), school starts and Grace died. I've been re-reading old updates and blogs - from her webpage, from 2006/2007. It's weird to read my own thoughts back...to read what I was thinking. Especially since a lot of it I still feel - not all the time and not as strongly but still feel...it's still there. I know she's still with us. I know she's always with us. She sends us signs - and have been more frequent lately. Maybe b/c it's August. I'm glad she's with us. But it's not the same and just not good enough. I can't touch her, feel her, smell her, see her, hear her...not fair. She visited me Wednesday. We met Lee and Hannah at the zoo in Waco. She greeted us at the front of the aquarium part (she loved fish, water and aquariums) - beautiful orange butterfly just hanging out around the front entrance. It was nice of her to stop by. :)  It was also nice because Lee re-told me 2 events. She had told them to me before, I know, it all sounded familiar but I had forgotten. And I won't be able to tell them exactly right - Lee would have to - but you'll get the idea.  It just proves the innocence and connection that children have.  We were in Ft. Worth when Grace died. The hospital we rushed to was near their house. So of course they came and with Hannah. Lee went out to the waiting room to be with Hannah - Hannah was Grace's age, so almost 2 1/2 years old. She was playing in the little playhouse in the waiting room and said Grace was there. She said she saw Grace in the waiting room.  She told Lee the Angels had taken Grace. That Grace had gone with them.  She wasn't promted for this information or asked, she just said it...she knew...she saw...she felt. That's just amazing to me! Then they came down for Grace's funeral. Lee was talking to Hannah and telling her there would be a lot of people at our house and some would be crying and be sad. And Hannah told her she knew and it was ok. Lee asked her what she meant. She said it was ok, that Grace was ok, that the man came and got her. Some man came and took Grace home and it was ok.  Children are amazing. And I totally believe she saw the Angels and the man. It helps some. And hurts some too. But helps mostly. I miss our Angel. I am thankful everyday for her and thankful for every day I had with her. She made me the person I am today, for better or worse. Camden is Camden because of her - in more than 1 way. He's been asking a lot of questions about her lately. I think it's partly her trying to get through to him. But also he's getting close to 4 and I believe starting to understand more. I love when he asks about her. It hurts but it's a nice hurt. I'm glad he knows about her and who she is. He's been helping me make piles for the garage sale and get items for the silent auction. He's so funny b/c now a lot of stuff he finds he suggests we use it for one of these two things. So sweet.  I will do a happy Camden post soon, especially since this one is so negative, but just felt the need today. Maybe because we spent the morning with some SMA families. It was great. They are great. But it also just brings up a lot of emotions. Obviously I deal with it though as I continue to help fight for SMA families. We will find a cure! I always say Grace chose August b/c it is SMA awareness month - she figured that was the best way to make people aware. Leave it to Grace :) I love you my beautiful Angel! Keep sending me those signs, I'll be watching!

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!