Early morning update.

6:24 am and I'm up. Been up for about an hour actually. Which isn't bad if you go to bed at a decent time of night. But, for me, sleep doesn't come very easily. Most nights I'm up until the wee hours. As in 3 am! Last night I was able to fall to sleep around 1 am. WooHoo!!

My brain will not shut off at night. When I lay down, the only thing that runs through my head, is Carly. Morning, noon and night she is on my mind. In fact, I told Paul just the other day that I was going to have to get to the doctor. I feel myself wearing down. Literally, dragging. My head feels like it weighs a ton. My arms and legs are weak. And the biggest issue at hand, my brain just will NOT shut off. I've even upped my Xanax at night. Which I don't like to do because I depend on my Xanax to get me through my anxiety attacks. My fear is, they will stop working for anxiety issues if I'm taking so many to get me to relax in order to sleep at night. Although, some nights, not even Xanax can help me to fall asleep.

Another problem that I'm having.....DREAMING. I'm dreaming a lot about our girl. They aren't good dreams either. They are very disturbing. The night before last, my dream woke me and I have not been able to shake it from my mind. We were inpatient, well, Carly was. She had had heart surgery, again. The doctors told us they were done working with her. She was on her own. I begged and pleaded. Screaming and crying for them to save her. This dream was so very real to me. Much like that horrifying day on April 23.

Other dreams have been even worse..well, not really sure that any dreams are good dreams, when you dream of the death of your child. But one dream really was a bad one. I dreamt that an acquaintance from high school, kidnapped Carly. And she killed her. In a very brutal way. Which I'm not even going to get into. And why I would I dream that an acquaintance from high school kidnapped Carly? I can't for the life of me figure that out.

Sometimes, my dreams have been more like we've lost Carly. As in, a missing child type dream. I dream quite often that I put her on the school bus in the morning. Watch it drive away, while she waves her little hand and blows me kisses...just like she did every morning...but then, she never comes home. The school has no idea where she is. The bus driver claims he/she never saw her. I can't get anyone to listen to me, that my child is missing. It's a very frantic dream. And I would bet, I dream that dream a few times a week.

Last week, I had a completely different dream. I dreamt that I could see Carly walking ahead of me. I kept calling out her name, but she never turned around. She never acknowledged me. She just kept walking further and further away. And no matter how fast I walked, I could not catch up to her. And then, she just disappeared.

I just wish, one night, I could dream a happy dream about Carly. Carly was such a happy go lucky little girl. Such a lover of life. I'm very envious of my cousin Cyndi, who told me that she had a wonderful dream of Carly. A dream that Carly was swinging (which she LOVED to do) and laughing. A very nice dream. Just once, I'd like to dream something nice about our girl.

My counselor has pointed out the obvious to me. She says that the reason I'm dreaming such horrible dreams about Carly is because of the way we lost her. Suddenly. Unexpectedly. Out of the clear blue. And, with no answers as to why. Well, no answers to some of our questions. Like, why the EMT's couldn't do more to save her? Why the ER doc's couldn't do more to save her? Why the EMT's couldn't get Carly to The University of Michigan? Where we all know her odds would have been much better for survival. And, according to the counselor, the dreams come out of shock. The shock that I'm still in. Yes, I'm still in shock over Carly's death. The big question is,,,when will these awful dreams stop? I would bet, they will not. Not for quite some time.

We finally turned American Idol on the other night. We haven't had the desire to watch it this season. It was one of Carly's favorite shows. Oh how she loved it. She would shush us when the singers would come on. She was all ears listening to each and every singer. And holy cow, if someone were talking...well, you just better not have been!

Our days seem to get harder and harder for us. Nothing is easy. Nothing is fun. Life is just upside down now. Do you know that food doesn't even taste good anymore? With the amount of food that I do not eat...you'd think I'd be pencil thin. Even laughter makes us feel guilty. We don't laugh all that much, but when we do,, we feel guilt.

Some people believe we should hand ourselves over to God. Well, sorry..that isn't going to happen. I'm just so very angry with God right now. I even question whether or not there even is a God. 'Cuz I'm telling you what, God sat on his ass on April 23, 2010 and did not one single thing for Carly. The way she lost her life was traumatic on her little body. The bruises on her lifeless body said it all. She was put through the wringer that day. And for crying out loud, was our girl not put through quite enough in her 8 short years of life? I think so. Could He not..if HE..even does exist, have spared her this type of death and taken her peacefully? I mean seriously, if he were insistent on taking Carly, could he not have done it in a more peaceful manner?

I realize I have some very religious folks following my blog. And that's fine for you. In fact, that's great! I certainly do not fault you with your beliefs. I too was a believer at one time. So please, do not be offended with what I/we now feel about God. Maybe some day, our thoughts will change. I hope they do. I really do want to believe there is a God out there. I want to believe that our little girl is now an Angel. But I'm torn and I'm pissed and for now, that's the way it's going to be.

I came across the following quote the other day. It speaks volumes.

While we try to teach our children all about life,
Our children teach us what life is all about.
- Angela Schwindt

Precious memory

As I cleaned in our bedroom yesterday - trying to get ready for new bedroom furniture - I found a very precious memory. A Mother's Day card that Carly made for me while in Kindergarten, in 2009.

It's obviously her tiny little hand print for the flower and the stem was made by using the side of her fist.

When I found this card, my tears started flowing. And then I opened it and read the following:

No truer words were ever written.

The memories come flooding back quite often of Carly.
From the day she was born, right up till the day we lost our precious little girl.

I also found several of her school papers yesterday too.
Paul had placed the remaining papers
from Carly's last couple of weeks in first grade, in our bedroom.
He did so, to get them out of our sight once we came back home, after Carly's funeral.
(which I refused to come home after, for over 2 weeks)
Paul didn't realize that I had a storage tote that I had used to place all of Carly's school papers in. So I placed those papers neatly into Carly's tote.
Finding those papers, along with this very precious memory,
put a stop to my cleaning yesterday.

I'm trying to figure out a way to preserve this card.
I have a couple of Carly's pictures/art work that I will be having framed
in the very near future. And I want to do something with this Mother's Day card,
but I have no idea just how to go about saving it/preserving it.
I'd appreciate any ideas!

Update...

Thought it was time to "update" the blog, before I lose some followers.

Most people believe that time heals all wounds. Well, after nearly 9 months after losing a very important member of our family, I'm here to tell you that the whole, time heals all wounds thing is a big bunch of bull!

I'm amazed at those who believe that we should be "over it" by now. That those people can possibly think that we are over it, makes me physically sick. Not to mention that they actually say this to us. If they don't say that...they do ask quite often, more often than not, "it's getting a bit easier now isn't it?" NO. Okay. NO. This is NOT getting easier for us. It gets harder every. single. day! Every day that goes on without Carly, is another day further from the very last time we held our girl. It sure isn't getting any easier.

Not a day goes by that Carly isn't on my mind. Almost every minute of the day actually. I wake up with her on my mind. I go through the day with her on my mind. When I do finally fall to sleep at night, she is on my mind. I dream about her while I sleep. I wake up thinking that she's still here. Only to have reality slap me in the face.

We find ourselves very envious of others. Others with small children. Especially, other people who are parents to a child born with Down syndrome. I hate that envious feeling. We both hate that envious feeling. But envy, we have.

One would have to know Paul to know that he isn't the type of person who approaches people (strangers) to strike up a conversation. My family members and close friends know this of him. Others don't. And lately, Paul has been seeking out others. Others that he/we encounter while out and about. Others who have a child with Down syndrome. Oddly enough, we are finding that we are seeing more and more parents out with their kids who are sporting that extra chromosome. Probably they were out and about before, but we just didn't always notice them. Although, I believe it's because we are missing our little side kick.

I seem to have a little bit of a harder time with striking up conversations with other parents who are out and about with their child with Down syndrome. I do eventually speak, but I'm not the one who seeks them out. Which is kind of a change of rolls for us.

This week is proving to be just what I thought it would be. Difficult. A few months ago, Paul and I ordered a new bedroom set. It's to be delivered in a couple of weeks. I've put off, the cleaning of our bedroom for the past couple of months. But, I'm in there this week trying to get things in order. My bedroom has be neglected the past 9 months. I just didn't want to face having to "clean" it up/out. And trust me, it shows that the bedroom has been neglected.

Carly shared our bedroom with us. Since the day she was born. Her little toddler bed is still in our room to this day. And soon it will be removed, to make room for our new furniture. I can't imagine how that is going to hit us. Removing her bed. We shouldn't have to be removing her bed for the reasons at hand. We should be removing it and replacing it with a regular twin size bed. Or better yet, putting her in her own room. But just removing it, that just doesn't seem right to me.

What to do with all of Carly's clothing? How am I going to remove all her things from both of her dressers? How will I remove her clothes from the closet? These question are the reason that I have not been able to get our bedroom into order. It has just been to hard for me. Carly's clothing will be the very last thing that I remove from our bedroom. I won't part with her clothes tho., They will be placed in totes and put into storage. Eventually, I would like to find someone who can make a quilt or two or more, (she had a TON of clothes) out of her clothing. Ashleigh came up with that idea and we think it's a great one! Sorry, call me selfish, but I can not part with her clothes. I just can't do it. Even tho I know that other children could greatly benefit from those clothes. I can't part with them. I've always donated Carly's clothes to Good Will, but not this time. Not going to happen.

I told Paul the other day, "if we are changing the furniture in that bedroom, then I want the whole thing changed." (as in, painting the walls, getting new curtains and bedding.) And so, we're going to be very busy the next couple of weeks. Change is suppose to be a good thing, sometimes. Right? We'll see. I may be completely pissed off after we make this big change in our bedroom.

I leave you with the following video of Our Dancing Queen, Carly! Yes, I have been watching her video's. They make me happy and sad at the same time. Missing her so very much.

Photo and video editing at www.OneTrueMedia.com

Tears. Cell Phones. And Chance encounters.

Our tears continue to fall. At any given moment we can get on a crying jag. It really doesn't take much.

We were due to get new cell phones. Actually, we were way past due. So, on Saturday Paul and I headed to a nearby town to visit a Verizon Wireless store. We found the cells we wanted. The sales man was great in assisting us. Probably the very first time that I could even say that about a Verizon Wireless employee! I had considered ordering our new cells online, but really wanted to get an up close view of the phone I had been looking at. We ended up going with a Droid 2. I got a white one. Paul got the black one.

In all honesty, it's way too much for Paul to tackle. HA! I think one of the kids will probably end up with his. But, couldn't beat the deal. Buy one get one free and over $200 mail in rebates..which will hit the mail box tomorrow morning! Making the total cost about $50!!

BUT...we had tons of pics on our old cell phones. We wanted them. Most of which were of Carly. We had close to 400 pics between both of our old cells. I had told the salesman that I wanted all pic's transferred over. He then went on to tell us that he had to charge us $20 per phone for up to 100 or some pic's and then an additional fee of (he had to check on it) X amount of $'s for the rest of the pics. Oh, and $10 per phone for all contacts to transfer. When he found out how many pic's we had to transfer, he nearly fell on his face. He then wanted to know if we had a problem with him seeing the pics as they transferred. We told him, "no." And we went on to tell him who was in most of these pic's.

We stood and talked to this guy for quite a while about Carly. And of course our tears started flowing. Right there in the very busy bustle of the Verizon Wireless store. We got ourselves pulled together as the salesman went to do his thing with our transfers. He got one phone transferred and brought it out to show us. The tears were flowing once again. Seeing all those pics of Carly with that wonderful, silly little smile on her face. I couldn't stop. I stood there with tears streaming down my face. And I seriously could not stop. The poor salesman just kept telling us how sorry he was for our loss.

Meanwhile, the manager had been lurking around, no doubt wondering why the heck these two crazy people were standing at the counter in Verizon's store with tears running uncontrollably down their faces. When all had been transferred, the salesman came back and told us, "all transfers are on the house today." I tried to pay for them, I told him I didn't care how much they cost, I would pay. But, he wouldn't take money for any of it.

Oddly enough, as we stood talking to this salesman, he told us that he had a friend that had a 7 year old daughter literally dropped over in the back yard while outside playing with her cousin last year. Cardiac arrest. Just like Carly. Although, this other little girl's parents knew that this could happen. And we were told this would not happen. The other girl didn't have an entire heart. She had been born with HPLS and was not expected to even live beyond the age of 2. But, without any warning, just like Carly, this little girl dropped over in her back yard while playing. No symptoms. No warning signs. Nothing. Just. Like. Carly.

After we left Verizon, we had some running around to do before heading home. We had to get a watch, that I bought for Paul for Christmas, re-sized. We made a stop at Kay Jewelers in the Mall. The lady wanted to know why I didn't come buy the watch from her in person. She was very friendly and just kidding around with us. And of course she told us that she would have given us a really good deal...(I beg to differ!). Paul told her that we did a majority of our Christmas shopping online this year. Of course she didn't just take that as an answer. So, Paul went on to tell her just why we did so much online shopping. That we had lost our 8 year old in April and no one was up to much Christmas shopping other than online. We talked a little about the how's and whys and what's...even tho we still don't even really understand. The sales lady then went on to tell us about her 6 year old son. He had been born with a heart murmur. But, it was so faint that he never had an echo done (which really bothers me that a doctor would let a murmur go for six years). At one of his recent well child visits, the doc suggested they get it checked out. The murmur had become much louder than it had been in the past. And so, this little boy was diagnosed with a heart defect at the age of 6. They now face the unknown with their 6 year old. Because other than a heart murmur, shows no issues whatsoever!

We finally headed home around dinner time. Brad had asked us to bring him a sub. So, we pulled into a Subway shop on our way home. As we walked in, we both noticed a lady sitting at a booth with a young man who had Down syndrome. Whenever we see a child/adult with Down syndrome, we are drawn to them. As I placed the order, Paul headed over to their booth. He had his new phone out, with a picture of Carly, ready to show these two people. As it turned out. This lady was the young man's mother. And I kind of figured that. His name was Andrew. He was 26yrs old. And greeted us with a "hey man, what's up?" We stood and talked to him and his mom for about 15 minutes or so. He made us smile. Made us laugh. And he waved to us none stop as we pulled out of the parking lot.

Our Saturday was full of tears, cell phones and a couple of chance encounters.

Christmas Eve

I've been meaning to get this post published since...well, Christmas, but just didn't sit down and do it.

My counselor gave me the idea do a candle lighting memorial for Carly on Christmas Eve. Well, it could be done anytime during the holiday's really. I decided to do it on Christmas Eve. My counselor had gotten this idea from The Compassionate Friends after the loss of her 33 yr old son over 8 years ago. The idea behind the memorial of course is to honor the memory of your loved one who passed away. It's actually a reading to be done as 4 candles are lit. In our case, I decided to have 5 candles. The center candle was lit to represent Carly. I lit it as I explained why we were doing this memorial lighting. The other 4 were lit while reading a few short lines of remembrance. Ashleigh read and lit a candle. My cousins Cyndi and Leanne each read and each lit a candle. And my sister in-law Sandy read and lit a candle. There were many tears and much sadness as we memorialized Carly on Christmas Eve. It was very bitter sweet.



The candles were to be placed in the center of a wreath. I bought a plain wreath and decorated it. Found some candle holders at The Hobby Lobby (except I forgot a candle holder for the center candle, so we flipped a jar candle over and used it!) and made a pretty little memorial arrangement.

As I said, this could have been done at any point over the holiday's. I decided Christmas Eve was the best time. All the people who loved Carly and who Carly loved, would be together (minus my oldest brother and his family, who live out of state) and be able to be a part of this.

I also lit the candles on Christmas day and New Years Day and of course on Carly's birthday (Jan 2). This is something that we will continue to do each year. Although it sucks that we even have to. We will. We will because of our never ending love for Carly.

The problem with quotes.

I've been reading particular quote on facebook over the last several days. This quote can be interpreted in a couple different ways. That's the problem with quotes.

The quote I'm talking about reads as follows:

"I don't think the worst thing that could happen to me is having a child with Special Needs. I think the worst thing would be to raise a child who is cruel to people with Special Needs."

I've seen this appear on several of my facebook friends status updates. This quote, which was taken from a someone else's blog, was written by a person who doesn't even have a special needs child. Which, in my eyes, doesn't give them any insight on just what it means to have a special needs child. How can a person who doesn't have a special needs child even know what it's like? They can not. There is just no possible way.

My take on this quote is far, and I mean FAR different than the next guy/gal. You see, in my eyes, being given a special needs child is a blessing. A blessing that people who do not have a special needs child can possible know anything about. Most people who do not have a special needs child are thankful. Lets face it, and be honest. They ARE thankful. Which is so very sad.

Now, I admit, I didn't always think it was a blessing to be given a special needs child. Truth be told, I had never even thought about what it would be like. So when I was hit with the news soon after Carly's birth, that she may have been born with Down syndrome, I was devastated. I was devastated because this was not the child I wanted. Nor the child I dreamed of. How foolish I was thinking like that. Thankfully, that devastation and foolishness only lasted a few days..about 10 to be exact. And by then, I was so in love with my teeny tiny little blessing, that extra chromosome didn't matter to me at all.

As far as a child being cruel to a special needs child. Well, that falls directly on the parents of said, "cruel child". It was my experience, since Carly started going to a public school in kindergarten..it is NOT the child who finds a difference. It's the parent. The parents steer their child into cruelty. It's something the child learns. Something that comes directly from HOME. Something that, in time can fester over the years and turn people completely rotten. Just remember where that came from. HOME.

The kids in Carly's kindergarten and first grade classes loved her. They LOVED our girl. The parents, not so much. We were even told during an IEP meeting, (by a god awful teacher,,who didn't even care for Carly..but that's a whole 'nother subject!) that parents were voicing concerns that our child was being taught side by side with their children. How's that for a kick in the gut? Straight out of the..hold it...dare I say it?? PARENTS mouths. So yeah, a cruel child begins at HOME people! You get out of your kids just what you put into the raising of them. If you show them how to be nasty and cruel, eventually they will pick it up.

I can say what it's like to have a special needs child. I lived it for 8 years. I dealt with the cruel remarks of teachers and staff at the school (all adults). I dealt with hearing from the school, how PARENTS questioned my daughter being taught with their child. Oh my god that broke my heart. Carly was so sweet. Kind and loving. She was gentle and caring. A good natured child. Well behaved, even more so than her fellow, "typical" peers. She was doted on by all of her classmates. I witnessed with my own eyes just how much the kids loved her. I went to the school countless times to observe Carly in action with her peers. Those kids loved her. Those kids insisted that their parents take them to Carly's visitation at the funeral home. Their parents were all at a loss of words at the funeral home. And I made a point to tell them, "you have a special little boy/girl, who you should be so proud of because he/she was such a great friend to our girl." I hope that my words stung those parents. If only for a moment. Those poor classmates cried puddles of tears for our girl. Those kids still talk about our girl. To this day, those kids miss our girl. Thankfully, those idiotic parents hadn't yet rubbed off on their kids by the age of 7. And I hope our girl taught those parents a lesson. The lesson that their kids are capable of accepting a special needs child. Their kids didn't bitch and moan that Carly was in their classroom, learning along side of them. That my friends, is what their parents did. So, yeah,,,the parents do eventually rub off on their kids.

In my opinion there is NOTHING and I mean NOTHING that compares to losing a child. Having a special needs child...really is difficult at times, but so very worth it. Having a cruel child, well people...that's your fault. You teach your kids to be mean and that's what you'll get. A mean, cruel kid. That's up to all you parents out there. But. BUT, having your sweet little 8 year old literally drop dead before your eyes is the absolute worse thing ever. I would take a special needs child or a cruel child, hands down, over a dead one! Everything else in life is pure pettiness folks. Once you have to visit your 8 year old at a cemetery, reality hits you square in the face. The pettiness in life is just that, pettiness.

Please be careful with the quotes you steal from others. . . and don't judge me for my take on them. Because, seriously, if you think you have it bad with a special needs child or a cruel child...step in my shoes for a day. You'd then be very, very thankful.

As I said, my take on this quote may differ greatly than yours. We may all read the same words, but look at those words in a completely different way. That's, the problem with quotes!

***on a side note, I lost a couple facebook friends after I posted my take on this quote. Pettiness people...pettiness.***