A worthy cause

Ashleigh and her friends are running in the Children's Leukemia Foundation of Michigan's 5k (click here), in memory of sweet Carly. Team name: Carly's Angels. Reason being; Carly LOVED, LOVED, LOVED Ashleigh's friends! Even tho, Carly is now, likely their angel watching them from above, we all thought the team name was quite fitting. Those girls cheered her on and visited her throughout our experience with this evil, nasty cancer. Carly had more big sisters than any kid I know!

The girls are trying to raise at least $500. I realize most of you who read this blog, are not from Michigan. However, leukemia was a HUGE part of our lives with Carly. She was diagnosed with it in Sept '04 and from that day forward, it was our life. Countless hospital stays, tons of toxic chemo drugs, several surgeries, several bone marrow biopsies, several very near death experiences, many clinic visits and blood draws, X-rays, ultra sounds...the list goes on and on and on.

Although Carly was born with Down syndrome, and stood about an 80% greater chance to develop leukemia, none of us are exempt from this horrible blood cancer. Not me, not you, not your children. This is a very worthy cause and one that will always be near and dear to our hearts.

Ashleigh has participated in the Relay for Life before. She and her team raised a very nice chunk of change! That time, she walked in 'honor' of our sweet girl. Her team will now walk in 'memory'. Which makes us all so very sad.

If you find it in your hearts, to help with this worthy cause the girls would greatly appreciate it. Any amount at all helps. Again, click here, if you care to help out .

July 23 and still unreal.

As we try to navigate our way through this new life that has been thrown at our feet, we often times feel as though we have a constant pit, deep down in our stomach. It still seems so unreal to us. Today, July 23 marks three months to the day of our loss of sweet Carly.

Sometimes I feel as if I'm having a nightmare and just can't seem to wake up. It just doesn't seem as if any of this has happened. At other times, it feels like it's been years and years. And then, at other times, it feels as if it were just yesterday.

Wherever we look, throughout our home and yard, we are reminded of what we no longer have. Just last night, I caught a glimpse of Carly's beloved coloring books. Of course I knew they were in their rightful stop, but I caught a glimpse of them. And it killed me. Carly would sit for hours coloring page after page. She took great pride in each page that she colored. Those books will forever be a treasure to me.

As we sit down to dinner each night. We find it so hard to choke down our food as Carly's spot at the table sits empty. Which reminds us, what seems so unreal, is very much REAL.

Every place we go and everything we do, we are reminded of our great loss. Carly was our side kick. She LOVED to be on the go. Although, when she'd had enough, "HOME" was where she asked to go. Home was her favorite place to be. With Mama, Paul, Sissy & Bubba.
Home, is where she should be today. But that's never to be again.

How does one start to live a new life that has been thrown at them so unexpectedly? A new life that they never wanted to have anything to do with. A new life that they would quickly trade in for their old life; that's the life we want. The life where everything made sense. The life we had with our carefree, loving, happy go lucky, beautiful little girl.

I've found myself having dreams quite often at night. Once in a while they are horrible nightmares about Carly. Most often, they are dreams that I just keep wanting to have over and over. Just the other night, I had been dreaming about her. It was such a wonderful dream. When I woke up in the morning, I kept trying to go back to sleep, just to fall back into that dream again.

The whole thing is still so very unreal to all of us. None of us saw this coming. Not even her cardiologist or her heart surgeon. They are just as shocked as we are. Just the other day I was talking to my brother on the phone. He still finds this very much unreal too. Likely because, on April 22, we were over at his house. He told me on the phone, he never saw any signs of trouble heading her way. Carly was being Carly on April 22. While we were visiting with my brother and sister in-law, Carly was playing and skipping around, riding on the Gator with grandpa, laughing and waving at all of us. We left there that night around 8:30. At 9pm, Carly was begging me to take her to "McDonald's". I told her, "we'll go tomorrow Carly, it's almost bed time now". (Had I only known...there would be no tomorrow for her, I would have taken her) 14 hrs later all hell broke loose in my living room.

Now here we are, on July 23, three months to the day. Still in shock. And still feeling as if this is all just so unreal.

Just for the record

I want you all to know, that my venting is not directed at any of you blogger friends or facebook friends. Every one of you have been so very supportive. Please don't feel like you have to walk around on egg shells while reading my posts and trying to decide if you should comment or not. Surprisingly, comments do help me. As do comments and private messages on FB. They help me more than any of you could imagine.

Honestly, I do understand that people don't know what to say and that often times things come out completely the wrong way. I get that. However, I've had several people who do ask me stupid questions. Questions which are phrased in ways that would actually make your chins hit the floor. The best example that I can come up with for you would be, going to your 25th High School reunion and seeing good friends that you hadn't seen in 25yrs. Those friends who walk up to you and unknowingly ask, in a happy go lucky kind of way, "Hey, how's life been". Okay, that wouldn't bother me as much. I don't think , who knows at this point. But, when phrased in that manner by people who do know, well that just irks me. And Eldiva, if you're reading this,,,,it's not about your brothers. They asked me in a completely different manner. And they were very sincere and they were giving me big ole bear hugs at the same time.

One of the first things that the funeral home director told us to expect, were stupid comments. He said that often times people don't know what to say and say the completely wrong thing. He said for us to let those comments go in one ear and out the other. The only stupid comment that I heard (except that I couldn't remember because my head was so jumbled) was; " You know most kids with Down syndrome don't live long anyway. At least you had her 8 years". I couldn't remember what this person had said exactly and so I mentioned it to Paul and my parents, one night soon after the funeral. My dad pipped up and said, "I know what that person said", and he went on to tell me word for word what had come out of this lady's mouth. All I could say after I found out was, "It's a good thing my head was so jumbled, I may have decked the lady right there in the funeral home" .

I've been working on a post since the beginning of June. I hope to get it finished soon. It's just a tough one for me. I'll give you all a hint.....We paid one last visit to Carly's elementary school the week before school got out for summer break. It was a very emotional day and it's proven to make for a hard post to get through. I will eventually get it finished.

So, just for the record...my venting is never about any comments made to me from any of my online friends!

Quick sand.

Lately, people tend to ask me, quiet often; "so, things getting easier"? or "how's life these days"? Or they assume that since nearly three months have now passed since we kissed our sweet girl goodbye one last time, that things should be back to normal.

What is normal anyway? Other people think that back to normal means, getting on with life as you would normally do. Keeping your house clean (which is NOT happening around here). Going back to living life, because life goes on. Well, of course my head knows that life goes on, but my heart is broken in to a million tiny pieces and my heart just isn't wanting to let life go on.

The best way for me to describe how I'm feeling these days; quick sand. A feeling of sinking in quick sand. I've never actually sank in quick sand before, but that's the analogy that I'm using today.

When one sinks in quick sand, I can only imagine, he or she becomes very panicked. Anxiety would likely set in, along with great fear. Fear of how to survive. How to pull yourself out of the quick sand. Grasping at anything within arms reach.

Is there a right way to pull yourself out of the quick sand that you suddenly find yourself sinking deeper and deeper into? I'm not sure. Who's to say, what the right way is. The right way to pull yourself out and survive. What works for one, doesn't always work for another.

Every single person in this world goes about their life in their own way. Not one person would likely pull themselves out of quick sand in the same manner. Therefore, to suggest that I need to be going on with life as it was before..well, that simply will not be. It wasn't my choice to have life play out in this manner. Now I'm left to try to figure out how to go on. I'm left trying to figure out how NOT to sink in to the quick sand.

I don't think people realize how I struggle each morning just getting up. I literally have to force myself up. The ache inside of me is actually just that. An ACHE. I find myself having anxiety/panic attacks throughout the day. More so than in the beginning. Likely due to the fact that I was in complete shock for the first few weeks.

Sleep hasn't become any easier either. I find myself laying awake till about 3am each night. I'm getting up earlier in morning though. I was sleeping till at least 11. I just didn't want to get up and do anything. Now, I'm normally awake by 8:30. Notice I said "awake"....not actually up.

I struggle even going to the grocery store. I can't deal with all the people. I feel as though everyone in the store is looking at me. I try to put a smile on my face, but any one who knows me,,just has to look into my eyes to see the pain. And possibly strangers can see it too. I sometimes see people and think, "wow, their eyes look so sad". So then I wonder, is that what people think when they look at me now? Am I one who now has those sad eyes?

What I'm doing to keep busy these days...well, I hate to admit, but I'm playing games on facebook. Mostly at night and I mean late at night, when I'm not sleeping. Something I swore I would NOT do because I didn't have the time. Sadly, now all I have is time. However, I do spend the majority of my days outside. I've been putting in a flower garden. Quite a large one at that. I didn't intend to have it so large, but that's just the way things work out sometimes.

Normally, I'm outside all day long. Usually I head out around 11 and water flowers, plant flowers & pull weeds. I make my rounds feeding animals. Filling the bird bath & bird feeders. Cleaning the pool and usually sometime in the afternoon I'll get in the pool, where I spend a couple hours. Eventually, I find my way to my lawn chair where I tend to sit for hours. In between all that, I do laundry and hang it outside each load.

Paul eventually gets home from work ~ quitting time varies for him. At that time, I will then start dinner. Normally eating between 7-8. Which really needs to start happening more toward actual dinner time, like maybe 6ish. I'm still not eating much of anything throughout the day. I have been drinking more water, so at least I'm having something. I just don't have the desire to eat during the day. I'm not hungry, so why eat?

So to me, I'm grasping at things to keep me from slipping completely down in the quick sand. Much the same way as one would if they were actually sinking in quick sand. Except that I'm grasping at my flowers; watering them, planting and weeding them. I'm grasping at busy things that revolve around me being outside. That's how I attempt to stop that sinking in quick sand feeling that continues each day.

Not sure if one who sinks in quick sand ever actually gets out of it safely. But I do know that they likely give it their best shot. They do their best to survive a seemingly impossible situation. That's what I'm trying to do too.

Angry & Quilt. (guilt)

UPDATE:

I'm not going to go through and correct all the quilts to guilt's...cuz, frankly, I don't care. I knew I put 'quilt' in the title...meant to change it,,,but forgot to. Ashleigh pointed out the fact that I used the word 'quilt' each and every time. Now you see how my mind is working, or not so much! I can't remember ANYTHING. Can't remember how to spell words. Can't remember to place phone calls, barely remember to pay bills. I never know what day it is or what time it is. So, I'm sorry you're seeing me as I am these days. FRAZZLED! (Spell check didn't catch 'quilt' cuz it wasn't spelled wrong).

Angry:

I'm so very angry.

I'm angry that I don't have my little sidekick with me each day.

I'm angry because I will NEVER understand why Carly was taken so suddenly.

I'm angry that I didn't have one more day with her.

I'm angry that I won't have a birthday cake to make for her for the next umpteen years.

I'm angry that I can't hear her sweet voice and that wonderful laugh of hers.

I'm angry that I can't hug her.

I'm angry that she can't hug me, and pat my back while doing so each time.

I'm angry that I won't see her grow up and reach all those milestones that she worked so hard for.

I'm angry that she was taken from us, just as she started to explode with her communication.

I'm angry that God could have changed this whole scenario, but didn't. Oh...that really has me angry. Which makes me doubt that there even is a god....and that even makes me angry.


Quilt:

I feel such quilt.

I feel quilt when I eat one of Carly's favorite foods.

I feel quilt when I eat any kind of food, because she cant any longer. And she LOVED her food.

I feel quilt when I go into a store and see something she wanted and I told her to "wait till the weather gets nice".

I feel quilt for going to McDonald's~her favorite place to eat.

I feel quilt if I smile.

I feel quilt if I cry.

I feel quilt if I don't cry.

I feel quilt for not seeing that there was anything, health wise, going on with Carly.

I feel quilt each time I get into our pool. Where Carly spent most summer afternoons.

I feel quilt because I continue to live and she was taken away from a family who loved her more than anything.

I feel quilt because I can barely function.

I feel quilt because my house is in a shambles.....and I could care less.

I feel quilt each night as I finally lay down, that I have the comfort of a home which Carly loved and she lays in a grave 4 miles from home.

Memorial donations.

For those of you who have sent a check in Carly's memory, to Mott's Ped's Cardiology. The checks will be getting cashed soon. I just spoke with the gal in charge of Carly's memorial. So far, $1,117.00 is in a fund for Carly's Memorial. Which blows us away! Thanks to all of you blogger friends, FB and IRL friends who have been kind enough to send money. It will be put to use when the new Mott's hospital is done. Which is sometime in 2011 (supposedly). We are thinking of where and what we want done with the money. It will either go into the playroom on the cardiac floor of Mott's and or the cardiac clinic. Both of which, Carly LOVED to play in. Another thought, a couple of rocker recliners. I spent many, many, many days and nights in a wooden rocking chair rocking our sweet girl, which eventually does a person's back in! Either way, your contributions have been greatly appreciated by us and by those at Mott's. All the heart children and their parents will enjoy how these generous donations will be put to use. Again, thank you!

If any of you still wish to donate.

Checks can be made out to Mott's Pediatric Cardiology in Memory of Carly George.

Mail to:
Mott's Administration
Attn: Deb Lewis
300 N. Ingalls, NI4C06
Ann Arbor, MI 48109-5475