"Grieving the loss of a child is a process, it begins the day your child passes and ends the day the parent joins them."

Sunday, October 31, 2010

Halloween 2010....

...with a bit of fright!

The following picture has not been altered in any way.
We did not photograph a jack-o-lantern.
We used no props whatsoever.

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Around 6:25pm, October 31 2010,
I was sitting on the couch in our living room.
Paul was in the recliner and Brad on the love seat.
I caught a glimpse of this image on our living room wall.
And yes, this image has us all a bit freaked out.

Now, if you can't see the image looks like
a jack-o-lantern...maybe you'd better
get some glasses on and look again.

Because I have my cell phone attached to my hip
today...(I had the ringer off yesterday and missed
several calls...oops).
I quickly grabbed it and snapped this picture.
Then I went to find my camera.
I snapped another pic with my camera, but
the image had started to fade.

Of course I went on to send text
messages with this picture
attached to my family. Just to get their response.
My phone rang almost instantly.
My brother wanted to know
"what the hell did you do to get that picture?"
We did nothing!

This image lasted on our living room
wall for about 20 minutes.
It then faded away.
Never have we ever had anything like this appear.
And can't figure how how or why it
appeared tonight.
We don't even have one single Halloween
decoration out this year. No candles going,

What do you think of our Halloween 2010?

Not so happy...


Our purrrr-fect little girl.

This little kitty,
enjoyed her very last Halloween,
very much.

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Wonderful memories,
were made last year.

This year will be a,
not so happy...

Friday, October 29, 2010

Halloween memories.

The following picture's are from last year.
I'm very happy to have these Halloween memories with Carly.
But, I'm very sad that there will be no more
Halloween memories made with her.

Last year was the first Halloween that Carly really got "into" carving pumpkins.
Normally, she would have sat and watched her "Paul" while making
faces of disgust when he pulled all the goopy seeds!

Not last year though!
Last year, she got into it.
Big Time!!

In the above picture, I can still hear her "ugh" sounds
as she scooped out the inside of her pumpkin.
She was still a bit unsure of all the goop,
but she kept right on going.

The next day, we sat the freshly carved Jack-O-Lanterns out on the porch.

We usually did silly face Jack-O-Lantern's for Halloween.
Carly would always giggle after they were complete.

I so wish she would have sat down with those Jack-O-Lanterns,
but she would have NO part of it. She stood with me, in the
yard as I snapped the pictures.
I'm not complaining tho., because we have many
wonderful, Halloween memories.

Thursday, October 28, 2010

My lil' helper

These pic's were taken nearly a year ago.
We woke up one Saturday morning and guess who wanted to help "mama" clean??
Yep, this lil' girl.

I would hand her the Pledge Wipes and she would go to town.
Another great, sneaky way to get some OT in.

Taking her work very seriously.

She had to make sure her baby bed was clean first!

Then on with to end tables.
She would even cleared everything from the top,
of the tables.
Notice the little matchbox car?
RED, another favorite of Carly's.

I sure do miss my lil' helper. She was the best!

Wednesday, October 27, 2010

Days Go On & I Don't Want To Forget.

Days Go On:

And they suck, but they go on. And it seems as if my days get harder to get through as the days pass. Everything that I do, I am reminded of how much I miss Carly. People who tell you, "it gets better in time", are flat out liars. There is no getting better in time. Not now, and likely, not ever. Possibly because most people have not had to experience the loss of a child. Just like I have not experienced the loss of a parent or a sibling. If you haven't, 'been there, done that' then you really can NOT even begin to imagine. If you must try to imagine, here's what I suggest you do. Cut one of your limbs off and try to function. Trust me, it's damn near impossible!

As the days go on and I do each task around the house, I think of Carly. I always told everyone that she was the best helper that I ever had. I think her most favorite way to help "mama", was helping with the laundry. She helped with the sorting, placing in the washer, placing in the dryer and her most favorite,,,, pulling them out of the dryer and pushing the basket through the house to the living room, where she helped me fold them. Washcloths were her most favorite.Towels pulled a close second. The way we keep our washcloths is a little different than most people. In our main bathroom, I keep a basket on the sink which contains the washcloths for that bathroom. We fold them in thirds and then roll them up and place them into the basket. Each time we did a load of towels/wash cloths, Carly would run to the bathroom and grab the basket and bring it to the living room. She then went on to conquer all the wash cloths on her own. If I even thought about touching one, she quickly put me in my place, "NO, MAMA!" I thought it was a great way to get some OT skills going, without her even realizing it...and best of all, she LOVED it! Now, it's just not the same. I really miss her and the way she wanted to help with the laundry.

Making dinner isn't the same anymore either. Not to mention the empty spot at our table. Carly sat at the head of the table, go figure! I would have her set the table, she loved that too. She always wanted to help me cook. Sometimes I would let her, but I was leery of the the hot stove/oven. Once in a while I would tell her, "go get your step stool out of the bathroom." Off and running she would go. She would place that step stool next to me and stand there just wide eyed and waiting for her "cooking job". That never lasted long though. She too was scared of the "hot" stove/oven. She'd eventually jump down and insist on me turning on the radio. At that point, she ran and found her microphone and came running back to the kitchen singing at the top of her lungs and dancing all around the kitchen. I have some video's of that, but I haven't been able to watch any of her video's yet. I've tried, but just can't click the play button. Some day, I will share those video's with you all. But not today.

There really is nothing that doesn't remind us of Carly. She was the heart and soul of this entire house. She lit it up. She was our little ray of sunshine on our worse possible days.

I Don't Want To Forget:

I'm going to start writing in a journal. For the simple reason, I DO NOT want to forget ANYTHING that Carly said or did. Be it silly or naughty, such as flipping the bird. Although, I don't think I will ever forget the fact that my soon to be 24 year old taught my baby girl how to flip the bird. The odd thing was, Carly knew just when to use that naughty little finger. She always used it appropriately....well, you know what I mean.... I know it's not appropriate to even use it, but I think you know what I mean.

Just the other day, Paul was walking through the house with his shirt off. I found myself pulling one of Carly's famous little stunts. I stuck my finger straight into his bellybutton. Just the way Carly always did. She had a thing for bellybuttons. Believe me, her thing for bellybuttons was NOT pleasant. She would stick her finger so far in, that you would swear she stuck it all the way through to your backbone! Paul almost cried. Not sure if it was from the pain of my finger in his bellybutton, or because it was Carly's thing. Sadly, he had forgotten about Carly and her bellybutton poking until that very moment. The fact that he had forgotten made us both sad. We do not want to forget anything about her. Soooo,,,I bought a journal and I plan on getting busy and writing in it. You never know how easy it is to forget the small things until your mind is a jumbled up mess. And I Don't Want To Forget anything!

Thursday, October 21, 2010

She's still here...

...that's what I think.

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The above collage can be enlarged if you click it with your mouse.

Some of you might just think I'm crazy right now. And, most of you would be right! Having your 8 year old die so suddenly will make a person kind of nutty. How ever nutty I may be right now, I know for sure that we've had some strange happenings around this house in the past 6 months. Maybe strange isn't quite the word I should be using. Maybe unusual would be a better fit. Which ever..here I go, trying to explain things.

About 3 months ago, I was in the kitchen doing dishes. I kept hearing, what I thought was a child's voice. Yep, thought I'd lost my mind. I stopped washing dishes and stood there in silence, just listening. I had no idea what I had heard and even chalked it up to me losing my mind. But, it happened again, several days later and various times of that particular day. Finally, I realized it was the toy that hangs on the inside of our front door. I figured it was the batteries shorting out. I left that toy alone and didn't think much more about it. That particular toy is a small scaled down version of a fridge and you can see it in the top left corner of the above collage. In order to make it work, you have to place the magnetic alphabetic letters inside the fridge. At that point, the fridge starts singing, in a child like voice. For example; place the letter A inside and it will sing a little song, such as, "A is for apple yum yum yum." That's not the entire little song, but you get the just of it.

Now, we all know that toys with batteries short out and go haywire from time to time. But,,,,,a couple of different toys, at the same time, on the same day going haywire it's just kind of unheard of. To me anyway. In the top center of the collage you see Carly's toy shelf. Those toys have sat untouched for 6 long months now. My heart breaks each day I see those toys, but at the same time, I can't bear to part with them. The toys on the shelves and toys that are in the baskets (which Carly picked out herself), went off a couple weeks after the magnetic fridge incident. Hearing those toys go off at the same time was a little freaky for me. Again, I figured it was just batteries going on the fritz.

Moving on to the picture on the top right of the collage. A few weeks beyond the toy shelf incident. Ashleigh was in using the bathroom one afternoon. She started yelling for me to get in there. When I walked in to the bathroom, her eyes were just as big as saucers. She was standing looking at the toilet paper holder. As I looked down, I saw the toilet paper had been unrolled and was in a heap on the floor. Then she told me what had happened. She used the toilet paper,,,TMI, I know, but I have to explain it. Anyway, she used it, flushed the toilet and all of a sudden the entire roll of toilet paper started to unwind. She told me she rolled it back up, but it did it again. That's when she yelled for me. Now to understand this whole toilet paper story, I should explain something first. Carly loved to sit on the toilet. I kid you not, she was like a man. Sorry men, but it's the truth! She would sit and sit and sit. She actually sat Indian style (crisscross applesauce). Every time she got off the toilet, her poor bottom had a red ring around it from sitting so darn long! But she sat and read books, played with toys AND she unrolled the toilet paper. More often than not, the entire roll that was on the holder would be unwound and on the bathroom floor by the time Carly decided she was done going potty. As I stood in the bathroom with Ashleigh both of us staring at the unrolled toilet paper, I went over and rolled it all back up. And I will be darned if it didn't unroll while we both stood there. Our chins were both on the floor. The whole roll just kept going. That's about the time that I said, "Carly's here." I then went on to tell Ashleigh about the magnetic fridge and the toys on the toy shelf. (just so you know,,, our toilet paper NEVER EVER unrolled on it's own before that,,,without the help of little Miss Carly)!

The purple morning glory that you see in the bottom left corner of the collage has an interesting story behind it as well. My mom planted a pack of morning glory seeds. Once they started to grow, she gave me a hunk of them. I went out and planted my hunk in my garden. I watched each day for flowers to come, but they didn't come on as quickly as I thought they would. One day, a few weeks back, I was sitting outside and realized there were flowers growing from my hunk of morning glory! What I saw though, was a completely different color of morning glory than my mom planted (from the same pack) and had growing at her house. Moms were deep pink. As you see in my collage, mine is PURPLE. Carly's favorite color was purple! Of course I called my mom almost immediately to tell her I had PURPLE morning glory's. Her words to me, "Oh Joany, that's Carly." I had to snap that picture and text it to her. She could NOT believe what she was seeing. My purple morning glory came from the same package of deep pink ones that she planted. So,,,,did a purple seed get mixed up in the package? Maybe. But, how is it that I end up with the purple flowers???

Another unusual thing that has been going on for the past 4-5 months or so, really didn't have me suspecting anything. Until of course all the above things went on. If you look at the collage, the bottom center picture and the bottom right corner picture, you will see an end table. This was Carly's end table. If you look closely, you will see the messy inside which has been left untouched for 6 months now. Left the exact way that Carly left it. It's full of board puzzles. On to this story. I started noticing the door open on that end table. Like I said, about 5 months ago or so. I thought it was kind of odd, but didn't really dwell on it. I just kept shutting it each time I found it open. After the above things had gone on, I found the door to this end table was often times open more frequently. Finally, I asked if anyone had been going through Carly's end table. Everyone said, "no" and they looked at me with the look,,,why would we? Yesterday, I found that door open again.

I've gone over all these unusual things in my mind over and over again. I don't know what you all think, but I'm thinking,,, she's still here.

Tuesday, October 19, 2010

Reece's Rainbow, maybe someday

I received an anonymous comment here on my blog. Thought I'd share a link. Click here to view these precious little orphans. Orphans because their country, in which they are born, cast them aside at birth. Many of them because of birth defects. A large number of them are born with Down syndrome (Ds). The parents are ashamed of these children. The parents are frowned upon for giving birth to children such as these children. Children with special needs are not accepted in many other countries.

Back in December, Paul and I had inquired about a little girl in an Orphanage in Eastern Europe. Oh that little girl was a beauty. She had blond hair and wore a yellow dress. And I know most of my Ds readers know who I'm talking about!! I won't mention her name, because she has been spoken for by a forever family from right here in the USA! Thank goodness, because her time was running out.

In January-ish, I emailed Andrea, the founder of Reece's Rainbow. I inquired about the little girl with the yellow dress. I was sent several forms via email. But, very soon after, Paul lost his health insurance at work. By the time we got health insurance back, we had lost Carly. Health insurance is required in order to adopt one of these children. So that fell through. And the little girl in the yellow dress was spoken for. She had a forever family.

The problem for these children on Reece's Rainbow is that their time in an orphanage is cut short. If they are not adopted by the time they reach the age of 5 (some get lucky and can stay a bit longer), they are sent to an institution to live out the remainder of their lives. And from what I've been told, their lives, more often than not, end within 1-2 years after being institutionalized. Once they are placed within an institution, they can no longer be adopted. Then are confined to their beds. Fed rarely..if at all. :(

I will admit, when Carly was first diagnosed with Ds, (she was about 10 days old) I thought my world ended. I wasn't prepared for a child with special needs. In fact, I was in such bad shape, I had to meet my doctor on a Saturday morning. The doc told Paul and I that we were grieving for the daughter we did not get. He also said that the grieving would pass very quickly. He told us that he had many patients in his practice born with Ds. He sat and told us all about the CAN'S and NEVER once mentioned the can not's. His words finally sank in to my head. And within about a week, I was so over it. My heart was swelling with love and pride for this beautiful little 5lb8oz baby girl. We were all head over heals in love with this little girl.

Right now, I can not even imagine a family not wanting a little girl just like Carly. Oh my gosh. She was a beauty. A charmer. She was smart. Determined. Witty. Comical. Loving and yes, even stubborn. She taught our family so very much in 8 short years.

These poor little children that you see on Reece's Rainbow deserve families to love them. I've seen many of these children, (courtesy of all my online friends) adopted into wonderful families from all over the USA. These kids are thriving in their new found homes. They've been given a chance. A life. A family. Most importantly, they've been given love. Lots and lots of love.

I'm not sure why my anonymous commenter left this link for me. I visit the site often. Believe me, the thought of adoption has been in our hearts for a couple of years. We wanted to give Carly a sibling closer to her age. We also wanted to save one of these children from a god awful institution.

Reece's Rainbow, maybe someday...

Sunday, October 17, 2010

Sunday afternoon.

Today we visited our sweet little Carly.

We visit her often, but today

we wanted to decorate her grave site for fall/Halloween.

We think it looks pretty good.

Carly would likely agree.

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Wish I could remember to take my real camera

and not just use my cell phone.

Either way,

her grave is decorated for the season

and that's all that matters.

We placed mums on either side of the headstone.

Pumpkins and a cute little scarecrow girl!

And even a bale of straw (fake!),

along with some Indian corn too.

Afterward, we stood and cried.

Wishing so badly that we were thinking

about Halloween costumes and school parties.

But that is not our reality.

This stupid cemetery is.

And with that, we have to do the best we can.

So decorate for our girl, we will do.

Not sure that I ever posted her grave after we

placed the scaled down versions of

her Little Tike Toys, which still

remain in our backyard.

All the mini versions you see in this picture,

are the exact duplicates to the toys that

Carly LOVED to play on each and every day.

Often times for hours on end.

There is even a little dog that sits in within

the toys in this picture.

It looks like her little cockapoo, Penny.

The only ting missing within these toys,

is her beloved swing set.

Oh she loved to swing, swing, swing!

I would love to find a mini/model type

swing set too, but haven't been able to find one.

Yes, this is how we spent our Sunday afternoon.

With our sweet little Carly.

Friday, October 15, 2010

Another Friday & Grief Conference

Well, today is Friday. Again. Do you know how very much we dislike every Friday around this house now? We actually really dislike them. Every Friday marks another week to the day, without our sweet Carly. Today is our 25th week of "Walking Thru the Gates of HELL".

As time passes so quickly, our hurt deepens. I never expected that would happen. We've all heard the saying, "time heals all wounds." Well, I'm here to tell you all, that saying couldn't be further from the truth. Time isn't healing our wound. In fact, time is making it worse. Each passing day gets harder for us. Granted, we have only been on this horrible roller coaster ride with grief for 6 months. But I can tell you that within those 6 months, life has not gotten easier.

On October 6, we attended a grief conference with the speaker Alan D. Wolfelt, Ph.D., C.T. . He is a very good speaker. I would highly recommend his conference. This man knows his stuff! He spoke of the various myths about grief and I thought I'd share with you today, the 5 myths that he speaks of.

Myth 1: ~ Grief and mourning are the same experience.

Truth: ~ There is an important distinction between the two.
Grief; is the internal thoughts & feelings we experience when someone we love dies.
Mourning; is expressing those thoughts & feelings outwardly.

Myth 2: ~ There is a predictable & orderly progression with the experience of grief.

Truth: ~ Each person's grief is unique for him or her.
Grief is NOT predictable and can NOT be categorized.

Myth 3: ~ Move away from grief & mourning instead of toward it. Overcome it, instead of experience it.

Truth: ~ In order to heal, people must move toward their grief through continued mourning, not away from it, through repression & denial.

Myth 4: ~ Tears expressing grief are a sign of weakness.

Truth: ~ Crying is nature's way of releasing internal tension in the body and allows the mourner to communicate a need to be comforted. Crying makes a person feel better, emotionally and physically. Tears are NOT a sign of weakness. In fact, crying is an indication of the griever's willingness to do the "work of mourning."

Myth 5: ~ The goal; to "get over" your grief.

Truth: ~ One never "gets over" grief. That would mean we resolve or recover from grief. It also suggests a return to "normalcy" when the fact is life does NOT return to "normal". People who believe this are potentially harmful to the one who is grieving.

As I said, this man is a great speaker. Paul said he could listen to him every day. He draws you in very quickly. I was in tears within 30 seconds of the conference. It was very emotional for us. But he spoke of things that made us realize we aren't going crazy. And that each one of us is going through this process in our own way. Some people many not like it, they may disagree with our way, but we learned that we have to do it our way. And we have to go through it, we can not go around it.

My way of grieving for Carly is different than Paul's. For example; Paul feels closer to Carly by sleeping in our bed. (Carly slept with us every night. Right smack dab in the middle of us) I can't bring myself to lay down in that bed. I sleep in the living room every night. The last night I slept in our bed was April 22. Believe me, I'm trying to work through this. I don't even understand it. No one understands it. Except for my counselor. She told me it didn't surprise her. Because our bed, which Carly shared with us, was where I nursed her back to health on many separate occasions. Through many illness. Through chemo, 8 different IV antibiotics that went on for 8 weeks around the clock. Our bed is where I would place her with a portable DVD player while she was on her 30 day steroid phase of chemo. If I didn't place her between us with a movie on, I did not get one single minute of sleep; steroids don't allow a person to sleep, especially when they are taking multiple pills each day for 30 straight days. I even have a hard time just going into our bedroom. But, I'm working on it. Trying to build myself up to the point that I can at least get in our room and get it cleaned. 6 months of avoiding a room wreaks havoc on it. Trust me.

Friday, October 8, 2010


This is what you're left with after the sudden unexpected loss of your child.

I hate the fact that I have to take these med's.

I hate the fact that I need them to get through the day.













Personally, I'd like to throw them all away, but my doctor says
"you HAVE to be on these med's."
Truthfully, I HAVE to have them.
Can't get through my days without the stupid med's.
Like I said.

Wednesday, October 6, 2010

Down syndrome

I've been reading quite a bit about Down syndrome (Ds) this week, on various blogs and facebook. This month being Ds awareness month many people are sharing quite a bit. I have read so many different thoughts of others regarding Down syndrome. How they think of their child. How others think of their child. How society views children born with Ds and places them in some sort of separate category than other children, also known as "typical children".

We had so many people tell us "Carly doesn't look very Downs." Which by the way, I HATE the term "Downs". Carly wasn't Downs or Down, she was born with Down syndrome! We have also heard, "She sure has a mild case of Downs." and the one that always made me cringe, "She sure is a high functioning Downs." We realize that Carly had been born with Ds and we had days that we could see those Ds features loud and clear, but other days, she looked pretty much like her classmates. And in my opinion, she was cuter than many of them too! The biggest difference in her outward appearance, she was a teeny tiny little 8 year old. Of course she was born into a family where height is NOT our strongest feature. Her Bubba (brother Brad) is 5'9", if he stands on his tip toes! We think he's a giant in our house! As a matter of fact, he kind of towers over his dad; who is 5'2"ish!

Down syndrome is a genetic defect. You can NOT catch Ds from anyone. It starts at conception. Carly was born with Trisomy 21, aka T21 and Ds. We never referred to her has being born with T21. We used the term Ds. Other people prefer the term T21, neither is more right or wrong than the other. It is what it is. T21/Ds is due to a third copy of the 21rst chromosome. You and I have 2 copies and those born with Ds or T21, which ever term you use, are born with a third copy of the 21rst chromosome.

Due to having that one extra copy, there are many different traits of Ds. Traits that vary with each child born sporting an extra chromosome. Some kids with Ds are born with very distinct features, others, not so much. Not every child with Down syndrome will carry noticeable physical characteristics/features. The following are some of the characteristics that many born with Ds can have. But, they don't all have them. And they don't have all of them, necessarily. Some have fewer of these characteristics than others. Some have more. (I have placed an X next to the features that Carly had).

*A flattened appearance to the face
*A high, broad forehead
*A smaller head, proportionately with their body size X
*An upward slant to the eyes X-one of her eyes was slightly, the other not so much
*Wide set eyes
*A narrow slit to the eyes X only when she was cracking up laughing!
*Pronounced bags or folds under the eyes
*A small nose & lack of bridge or flat bridge X she had a small nose, but she did have a bridge.
*Small ears X
*Small mouth -X kind of..she was teeny and would've looked funny if her mouth were big. It fit her body type.
*A large protruding tongue
*A short neck X
*Short arms and legs X kind of... again, they fit her body type.
*A curved pinky finger on one or both hands X (both)
*Short fingers and toes X Carly had a tiny, itty bitty, 'little toe' on each foot.
*Stubby/chubby fingers
*Large space between the first and second toes X
*A single deep crease in the center of one or both palms
*Poor muscle tone X only after chemotherapy for 26months.
*Loose joints
*Weak reflexes X again, only after going through chemo.

More often than not, medical issues occur and often times they can be quite serious and life threatening for children born with Ds. The most serious of the medical characteristics associated with Down syndrome is cardiac abnormalities. Approximately 40% of all children born with Ds have congenital heart defects. Other medical issues include a higher incidence of infection, and respiratory problems, not to mention more frequency of the usual cough, cold and flu viruses experienced by all children. Carly was never sick early on in her life. Other than her heart surgery. She was 15months old when she developed an ear infection and respiratory infection. That was her first bout of oral antibiotics. (Which was far different than my other two kids. Ashleigh and Brad were on oral antibiotics quite often for ear infections from about the age of 3months up till elementary school age). Children born with Ds also have about an 80% greater chance, than their fellow "typical peers", to develop leukemia during their lifetime. On the other hand, due to their unique genetic make up, they can achieve remission and quite often beat cancer at a higher % rate than their "typical peers". Other medical issues can include epilepsy, vision and hearing problems, gastrointestinal and thyroid problems, skin problems, obesity issues later in life. There are various other medical issues too. Neck/spinal problems that most generally require surgery to correct. Air way problems and sleep apnea and the list goes on and on.

Cognitive issues also occur and occur more frequently than the medical issues and often times, more frequently than the physical features. Children born with Ds may have a difficult time learning to speak. Some may speak very well, others, not so well. Carly was getting better with her speech, but much preferred American Sign Language (ASL). We were pretty amazed with her ability to learn sign language so quickly and the fact that she taught herself a majority of her signs by watching Signing Time Videos~those cost us a small fortune to purchase, but were very well worth the money spent. Carly was using well over 1,000 signs by the time she passed away. She did speak and it was clear when she did, but she was very shy around other people and usually her words were spoken at home more than any place else.

Learning often times come slower for kids born with Ds, but they can learn and are more than capable of learning. Who cares if they learn at a slower pace. The fact remains, THEY CAN LEARN!

As most of you know. Carly did have a severe heart defect and went through 2 open heart surgeries. Surgery 1 was at the age of 3months and surgery 2 at the age of 29months. Carly also was diagnosed with Acute Lymphoblastic Leukemia when she was 32months old. Adding to the list of those pretty serious health issues, she was diagnosed soon after birth with hypothyroidism and was placed on medication at the age of three weeks. Carly's vision was good. Her hearing was good. She was in remission with her leukemia going on 6 years at the time of her passing. A few years ago she developed a platelet disorder, it was not the leukemia returning. It was in fact a platelet disorder. UofM had had other cases of kids with Ds who had gone through chemo and then were left with a platelet disorder. As I mentioned above, the genetic makeup of Ds causes various health issues. I suppose that her health issues did make her different than her school friends, but other than that she was pretty much like everyone else.

Reading the various blogs and facebook comments throughout the month of October, which I mentioned is Ds awareness month, I find myself kind of torn. Yes, my daughter was born with Ds. No, I wouldn't change that even if it were possible to somehow reverse Ds. Was she different, well, yes in a way she was. But in the end, aren't we all different from each other? I think so. Some people say that Ds is not what their child is, that it doesn't define their child. They also say that their children are just that, a child first, who just so happens to be born with Ds. I agree, for the most part, but the fact is, Ds made Carly who she was. Ds gave her the ability to love with her whole heart. Ds gave her the ability to be a carefree child. Ds was Carly's genetic make up and it did make her who she was. Carly was Carly and she wouldn't have been Carly had she not been born with Ds.

Tuesday, October 5, 2010

October is Down syndrome awareness month

Many people are blogging each day the month of October, because October is Down syndrome awareness month. I'm not taking part in the blogging for 31 days. For one reason~my thoughts are often times very sad and full of gloom and doom. Another reason~I sit down and have so much to say on this blog, but just can't get it all typed out. My head is just so jumbled. So, in memory of our sweet girl, and in honor of Down syndrome awareness month, I'm sharing with you all today the Down syndrome creed. Many of you already know it. I've posted it on here before. It's just special to our family and thought it needed sharing again.

The following is the Down syndrome creed. This was read by my Aunt Linda during Carly's funeral service.

The Down Syndrome Creed

My face may be different
But my feelings the same
I laugh and I cry
And I take pride in my gains
I was sent here among you
To teach you to love
As God in the heavens
Looks down from above
To Him I'm no different
His love knows no bounds
It's those here among you
In cities and towns
That judge me by standards
That man has imparted
But this family I've chosen
Will help me get started
For I'm one of the children
So special and few
That came here to learn
The same lessons as you
That love is acceptance
It must come from the heart
We all have the same purpose
Though not the same start
The Lord gave me life
To live and embrace
And I'll do it as you do
But at my own pace

For those of you who knew Carly, you understand how proud we will always be of her. How proud she was of herself, for her many accomplishments throughout her very short 8 years of life. Sure it took her a little longer to learn than her fellow peers, but she did learn. She enjoyed learning. She would come home from school and play school for hours. She would work on worksheets and then, erase them and start all over again. In fact, she was just taking off with her math skills. Something we were told she would struggle with due to being born with Down syndrome, but in true Carly style, she was proving all the text books wrong. She was getting it and LOVED it.

Our girl sure did teach those who knew her many life lessons. For those of you who didn't know Carly. You have no idea what you missed out on. This little girl gave love unconditionally; which is very hard for some people to ever do in a entire live time. She loved with her whole heart. And we loved her wholeheartedly too!