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...

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.

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!

Everything's going to be alright.

I found an article that made me smile. It gives me so much hope for the future. It made me realize, that even though there are many people who will not accept Carly for who she is; a child born with Down syndrome. There are so many people who will accept her. People will value her as a person. So what if not everybody does. For each person who looks down on Carly, there will be that many more who will not.

There is a reason that Carly was born with Down syndrome. I don't know that reason. I may never know the reason. But that big guy upstairs knows. God has a plan. Whether it's to teach others the value of a particular person. Make a family more appreciative. Or prove to families that they can in fact, over come various obstacles. I do not believe that having a child born with Down syndrome is a curse. It's a blessing. I've always known that. But stories like the following, click here, are absolute proof!

Sometimes I tend to get off track with my ability to actually see what's important, what matters and what doesn't. Easily done when someone is constantly throwing curve balls at you. But when I read stories like this, I for one believes that eventually, everything is going to be alright.

Why does it bother me??

Paul and I had Carly's conference at school last night. All in all, it went pretty well. We learned, on the academic end, Carly is progressing nicely. For her anyway. She is getting more vocal..which is GREAT! She is showing pre-reading skills and that's great too! She is getting numbers and working very hard to grasp the math concepts. We are all thrilled that she is more vocal. That she can write numbers and letters. That she can spell/write her name. That she knows all of her colors and shapes. That she is beginning to read. She can do word searches for crying out loud! Not bad when put to parents in those terms.

Socially, Carly is blossoming. She is quite popular. All the girls in her classroom want to be her friend. Everyone wants their turn to sit with Carly during story time. Stand in line next to Carly. Sit at the lunch table, next to Carly. Anything Carly does, a steady stream of girls want to be there with her. The girls and boys, take great pride in any accomplishment that they see Carly master. The teacher told us, "they are Carly's cheerleaders". That makes us smile!!

But,,,,,there seems to always be a, but! Funny how that works isn't it? The teacher and resource teacher, (who Carly sees every day for 30 minute sessions) had to do it. I understand that. It just doesn't make it any easier to hear. They had to tell us, Carly is very behind her peers in terms of learning. Yes...she is progressing, but it's at her rate. Not at the rate of the class. Okay, so honestly, Paul and I know that. But, like I said, it doesn't make it any easier to hear. It kind of feels like a kick in the gut. Not a big ole kick in the gut, but a kick in the gut, nonetheless! However,we are thrilled with what she is doing. So is her resource teacher.

Don't get me wrong. I'm not at all upset with how conferences went. Not too much. What I mean is, they didn't tell us anything that we didn't already know. It's just hard to hear. As parents, we want what every parent wants. Their kid to thrive. To learn along side their peers. To gain independence. We understand that it will take Carly longer to get there, than say...her peers. But we have confidence that she will get there. How far she will go with her ability to learn is any one's guess. Of course we hope she continues on with her learning for many years to come. And from what I've read online recently..it's very possible that our kiddo's with Down syndrome continue to learn way into adulthood. Many educators feel that our kids will get to a point, where they maxed out their learning ability. So to speak.

At the end of the conference, I told the teacher's that we feel that any progress Carly makes in school, is HUGE. Even if it's a small accomplishment in the eye's of the educators...it's HUGE for Carly. And we're going to take whatever we get, and be proud of her! To that, they agreed!

Just wish I knew, why does it bother me?

After conferences, we headed down to the Girl Scout cookie stand. I've thought about signing Carly up for the Girl Scout's, but honestly I thought she would be too shy. And, up until this year, I believe that would have been the case. I guess I'd better start to think about it for next year. Hopefully, she will be even more vocal and more social. Anyway, we purchased 5 boxes of cookies. Oh my gosh...are they good!

Then we hit up the Book Fair that was going on in the library. Have I ever mentioned how much Carly LOVES books? She walks into a library and her eyes get as big as saucers. She is on cloud nine! We ended up buying her 4 books, a pencil...that she just had to have, and an eraser too. She thinks writing and erasing is just the coolest thing ever!

As we were getting ready to head home, we popped into the gym teachers office. I was curious as to how Carly was doing in gym class. At the beginning of the year, she was very shy in gym. She would stand back and observe the kids, rather than join in. Not anymore. This gym teacher video tapes bits and pieces of each child doing "their thing" in gym. He then loads them onto his computer, making it possible to share a little bit of gym class with the parents. So cool! Sadly, he only started doing this 3 months ago. We watched 2 clips of Carly in gym. The first clip was taken 3 months ago. The clip showed just how leery Carly was. She would take part, but was very hesitant. The second clip was taken last week. Holy Cow, what a difference in Miss Carly. She was involved. Focused. Having fun. Doing the activity for that day, which was under hand throwing. The gym teacher was very pleased with her progress. Although, he did admit...Carly does great as long as he keeps his distance! Apparently, Carly prefers the gym aide, over the gym teacher! After spring break, they will start doing over hand throwing. The gym teacher is excited for that session to start up because he has already seen Carly throw over hand. He thinks she has quite the arm on her!

In a nut shell. Conferences went okay. It's just so hard to hear what your child cant do. I hate that she has to be compared to her peers, but that's how the public school system works. That's how mainstreaming our kids works. And some how, I need to grow a little thicker skin. That way, maybe I can stop wondering, why it bothers me so.

10 Reasons to Give Thanks for Your Special Needs Child.

I found the following while on Twitter this morning. Being this is the week of Thanksgiving. I thought I'd share with you all.

1. You never have to worry about worrying over nothing.
Let other parents obsess over the frivolous and the shallow. Your child will make sure you always have something worthy to worry about.

2. Developmental delays = more years of hugs, kisses, and little-kid sweetness. What mom of a sullen teen doesn't secretly wish for the same?


3. Maybe someday, Ty Pennington will come build you a house.
Hey, Extreme Makeover: Home Edition loves families of children with special needs. Your little one may be your ticket to a lavish living space.


4. Any little milestone is a cause to throw a party. Your child works hard for every step, sit-up and syllable, giving you lots to be excited about.


5. Every day is a learning experience. Some days it's a pop quiz, some days it's a crash course, but life with your child is always an education, for sure.


6. You have the privilege of putting several doctors' children through college. After paying for all those appointments, you may feel like a one-family scholarship foundation. Put your child's name on some letterhead and take pride.


7. You meet a better class of parent in waiting rooms and support groups. Your child frees you from having to hang out with those snotty parents on the playground, and gives you entry into an exclusive club of people who are sensitive, sarcastic, and sure of their priorities.


8. You have an iron-clad escape excuse for any occasion. You'd love to stay at that boring party, crowded event, endless church service, but, you know, your child just can't tolerate it. (And if sometimes it's you who can't tolerate it -- who's to know?)


9. Coming up with new strategies every day keeps your brain sharp. They say doing crossword puzzles helps ward off Alzheimer's. Figuring out your child's schedules and treatments and lessons and rights and restrictions must easily provide twice the protection.


10. Your blessings will always be fully counted. Other parents may take the gifts that their children bring for granted. Not you. Not ever.

AMEN!

School = Headaches.

This morning I dragged Carly out of bed...she would have rather stayed in her bed under the covers, where it was warm and cozy. Who could blame her? It's a chilly Monday morning after all.

Much to the schools dismay, Carly will be starting back full days today. I had to finally put my foot down and tell them that this is my decision, not theirs. I haven't felt good about these partial days ever since we started them on Sept 23. I've felt Carly is missing out on learning, socialization (which is very important) and all of her specials (gym, music, art). To me, that just doesn't seem right. It seems to me as if she is being cheated out of her education. One that she is entitled to.

Last Thursday I ticked off the Special Ed Director. Too bad, is what I have to say. I spoke my mind. Well, actually I emailed her because I could NOT get her attention. I sent a copy of that email to the Principal too. So of course they called me in for a meeting. What they didn't know was, I was bringing my mom as a witness to the meeting. I've learned, NEVER go alone to a meeting at the school regarding your child. Never. EVER.

At the meeting, the very first thing that took place was...the Spec Ed Dir jumping all over me. Scolding me like a child for speaking my mind. I was told I insulted the speech teacher in the email that I sent. I did no such thing. What I did do, and I pointed this out to the principal & special ed director, was quote the speech teacher. Word for word quotes. The quotes are all negativity toward Carly. Negativity that I have heard from this speech teacher since Carly started going to school here in Kindergarten. The only words this speech teacher says to describe Carly are, "isn't", "can't", "doesn't", "not", "won't"...I think you get the picture here. Quite honestly, I've had enough of her negativity.

Let me tell you a little about this speech teacher. She was brought in out of retirement to work at our school. She used to work at a hospital rehab center for kids. She is older. Very unpleasant. Grumpy may best describe her. She is not open to signing, which Carly does 90% of the time. She tells me that signing does not lead to any speech. She tells me signing isn't recognized as a second language. I feel as if she is afraid of signing. She is set in her ways of 'old time teaching'. Fine for some. But it's not going to work for my kid.

Back to the meeting. I did NOT sit back and let this Special Ed Dir continue on with her scolding. I spoke to her firmly. Told her I was Carly's advocate and I would speak my mind any time that I see fit. I gave it right back to her. She isn't going to come at me with both barrels loaded and not get it right back in return.

Since Thursdays meeting, I've been researching, with a fine tooth comb, Wrights Law among other laws regarding schools and special need students. I'm sure the Spec Ed Dir knows these laws as well. I don't like to read that you basically need to kiss the team of educators, butts. I have tried and tried to communicate in a civil manner with the 'team', but that gets me no where fast. If you want to get the attention of the 'team' you have to get nasty and defensive. Sad, but so true. I had to point out things that the speech teacher was saying just to get a sure fire meeting. It worked. I got the meeting. It was worth it, even if I did get scolded like a child. Which by the way, I made clear that it will never happen again. The scolding I mean.

During the meeting, it was determined that Carly would go back to full days. The school was told that I will be (or my mom) observing Carly in her classroom, resource room and during speech. We will do this often. I don't think the school likes to be watched, but too bad. They are not doing right by my daughter and therefore, they need to be watched.

The school continues to drag their feet with getting an interpreter for Carly. One that is needed. Seriously, how can they know what Carly is capable of, if no one in that school signs???? Carly has no problem understanding what people are saying. The interpreter is for the school to know just what Carly is signing/talking about. How can Carly participate in any type of classroom discussion if they don't have a clue about signs? ? She can't.

All of this frustration with the school has caused me to have some massive migraines the last few days. I'm tired of the fight. A battle that should not have to take place. All due to the fact that I have a daughter who was born with Down syndrome. A daughter that deserves and is entitled to an education just like everyone else. As the law clearly defines. A daughter who deserves to have her needs met while at school. A daughter who is eager to learn. Capable of learning. Sadly, I know this is only the beginning of our battle regarding Carly and her education.

It breaks my heart every day when I send her to school. I know that she gets frustrated not being able to talk like her classmates do. Let's face it. Carly is different in many ways from her peers. Even though I use the phrase "More alike than different" quite often. The reality is, she is different. And I know that Carly knows she is different from her classmates. She knows she has limitations, even in the way she plays on the playground. The kids know that Carly is different than they are, but thankfully, I believe they realize that she is more like them than she is different. They see that she requires assistance in areas that they don't. However, the kids see that Carly likes to color, just as they do. They see that she likes story time, just as they do. They see that she likes to play on the playground, just like they do. She writes her name and is beginning to write words...just like they do. If it's so easy for the kids to look beyond the differences, and see that Carly fits in and that she is capable...why is it so hard for the school to see it??

I'm just not convinced that the school really wants Carly there. I've cried over this so many times. When the teacher found out that Carly was returning to full days she sent me a note. Mind you, these last four weeks of partial days, the teacher has sent me NO notes telling me about Carly and how she is doing. The note said "Carly is very tired during the afternoons". And "Carly kept asking for momma today". The real kick in the gut was when the bus driver brought Carly home that day. She went on to tell me that Carly's classroom aide brought her to the bus and informed the driver that "Mrs. R (teacher) doesn't think Carly is ready for full days". I can't get it out of my head that that's just the teacher not wanting Carly in her class. For whatever reason. Maybe she doesn't want to modify work. Maybe she doesn't want to slow the pace down for Carly. I don't know. I just can't wrap my brain around any of this crap.

My fear is that all of this negativity from the school will rub off on Carly. I fear that she will develop behavioral issues. Paul and I are trying not to talk about it in front of her. She is like a sponge. She takes everything in. If Carly does develop behavioral issues. I really do think I will blow my top. The school will then, likely wish they never heard the name Carly George.

Schools should not = headaches!

Makes me just cringe.

It happens all too often. Each time it makes me just cringe. Wondering what I'm yappin' about?? Let me tell you. I just cringe each time someone says to me, "oh isn't she the most loving little girl" or "those kids are such loving kids aren't they" I hear these comments often and each time, they make me just cringe. My response is usually the same. I respond with, "oh sure, when she wants to be loving. Pretty much like every other kid". What else would I, or could I say to those remarks?

Yes, my daughter is a loving little girl, when she wants to be. She is also one stubborn, strong willed and determined little girl. More loving than others, because of Down syndrome? I'd have to say that is a misconception. Although, many people do believe that is in fact true. I can't say for sure that kids with Down syndrome are more loving than the next kid. What I can say, about Carly is, she is not anymore loving than any other kid. However, Carly is very forgiving. Very caring. Shows compassion toward others. I like to refer to those as her qualities. Qualities that so many other kids are lacking.

Here is a story that is sure to knock your socks off. Paul and I had Carly out and about one day. We were shopping. I was in the check out line and Paul had Carly in a cart at the end of my isle. I saw an older lady stop and chat a few minutes with them. I also saw Paul's facial expression change. It went from a smile to a blank look. Paul's a proud dad. He's proud to be Carly's daddy. This really knocked the wind out of him. I just knew something awful was said. The lady headed on her way. Paul and Carly headed for the car. When I got to the car I knew the older lady said something that just didn't set well with Paul. I asked him what was going on and so he told me. The older lady had made a comment about Carly. This lady said, "oh we have one of those in our family too". She was talking about Carly having Down syndrome. Yes. This makes me just cringe. She also said, "aren't they the most loving creatures". That comment really makes me just cringe. Not to mention that it's a great big slap in the face! Seriously, do people actually refer to others as "creatures"? Apparently.

How wrong one can be?

Being this is Down syndrome awareness month, I've been thinking quite a bit about when we found out that Carly was in fact born with Down syndrome.

We found out the day Carly was born, that there was a possibility that she was born with Down syndrome. However, the doctors did not feel there were very many soft markers. A couple, but nothing that was real alarming. Still to this day, that remark from the doctors just floors me. A couple of markers? Really? Give me a break. Either she has them or she doesn't.

I remember the labor and delivery nurse asked me how old I was..this only hours after having Carly. I told her that I was 35. And that I had just turned 35 a few months prior. Of course I just knew that was it. My age did it. I was more than 35 at the time of Carly's birth. That must have done it. 35, the number that all people talk about. Over 35 and pregnant. Like it's a sin. I just knew it was all due to my age. What other reason could it be? How wrong can one be?

Within a few weeks, we had our confirmation of a Down syndrome diagnosis. We went through shock, anger, grief and all those other emotions that one goes through after a major, life altering shock takes place. All sorts of thoughts went through our minds at that point. Would she be able to sit up? Would she be able to walk? Would she learn to talk? We had no idea what to expect for our daughter.

I had seen both ends of Down syndrome. My cousin (my moms niece) was born with Down syndrome 25+ years ago. She isn't able to walk, talk or feed herself. I had also seen the other end of the spectrum regarding Down syndrome. My 2nd cousin has a son, who is now around 12, who was born with Down syndrome too. He walks, or should I say RUNS! He talks. He attends public schools. However, just because we knew that it didn't ease our doubts for our daughter. Our minds quickly leaned toward the worse possible out come for our baby. How wrong can one be?

I didn't know how I was going to take care of this baby. I only knew how to mother a typical child. One who didn't have any "special needs". I would soon find out, you parent these kids the same way you parent any other kids. We gave Carly utensils at dinner time, just as we did with our oldest two. Imagine my surprise when I found out that using spoons and forks are a huge milestone for kiddo's with Down syndrome. I never thought about it. I just went about being a mom as I did with our first two.

Carly did sit up. She did learn to walk. By 18 months she was cruising.Walking all over the place. She was feeding herself with utensils by the time she was 1 year. I doubted her. I doubted me and my ability to care for her. Teach her. Help her achieve all that she were able to.

Since having Carly, I have found out that although age may increase your chances of having a child with Down syndrome. Age is not all to blame. Teenage girls have been know to have given birth to babies with Down syndrome too. Age is a factor, but it's not the only contributing factor. As I said, I just knew my age was the reason for Carly being born with Down syndrome. How wrong can one be?

For those of you wondering about me having 2 cousins with Down syndrome. I did run that past my genetics doc. She informed me that there was no link between the 3 separate (Carly included)diagnosis of Down syndrome in our family. I don't actually buy that. You see, this is all on my mothers side of the family. My moms sister had the first child in our family with Down syndrome. My moms first cousins daughter had the second child in our family born with Down syndrome. I have the third child born into the family with Down syndrome. Coincidence? I'm not for sure. I think that there has to be a link somewhere.

For those who don't have a child with Down syndrome. You may think you can relate to us moms who do. You cant. There is no way for you to 'get it'. Not until you have walked in our shoes can you 'get it'. For those who underestimate our kids. Remember, I was underestimating Carly from the get go. All I can say is~How wrong one can be?

What kind of world are we living in?

I often check out the news online. Whether it's our local news or national news. I just never seem to be able to sit down long enough to actually watch the news at the time that it's broadcast. Plus, Carly pretty much owns the T.V in the house. That's not really true. It's actually dinner time around here when the news is on. But Carly does have dibs on the TV most nights!

CNN's web site is one I frequent. The other night I read an article (here) that really has bothered me. Likely because I have a child with a cognitive disability. I'm sure once you read the article, you will be bothered by this too. Whether or not you have a child with a disability. This is just plain sickening.

I have often worried about people being violent toward Carly. Be it bullying...which I really do worry about now that she is in school. Or the unthinkable violation against her. Knowing that it's happening more often just breaks my heart. What kind of a world are we living in? A very scary one by the looks of it.

Makes me want to put Carly in a bubble and keep safe from all the awful things that are going on in this world today. To me, this is the unthinkable. Violating the disable in any way shape or form. Seriously. What kind of world are we living in?

Swim Karen Swim.

Last year, Karen Gaffney swam 9-miles across Lake Tahoe. She did this to raise money for the National Down Syndrome Congress and to show the world that people with Down Syndrome are more alike, than they are different. A phrase I tend to use often.

Karen is such an inspiration. Click here to read what she's up to now.

Swim Karen Swim!

Why does it have to be so difficult?

Why does it have to be so difficult to work with the school regarding Carly and her education? I really hate that it's so difficult. It really shouldn't be. Except that they think, they know, my daughter better than me. Just because they have read articles about some kids with Down syndrome. They believe that holds truth to all children with Down syndrome.

The problem?? Well, Carly uses ASL signs as her main form of communication. Yes. She does talk some. She is adding more and more words to her vocabulary every day. She knows her ABC's. She knows her colors. She knows all of her shapes. She can write her name. She can write the alphabet. She is beginning to spell words. She can even recognize words that I spell out loud to her dad. So she won't know what were talking about. For example: Carly really dislikes it when it rains. I spelled r a i n to Paul the other night because we had a chance of rain in the forecast. Carly heard me and yelled, "NO" and then went on to sign "sunshine".

All I want the school to do is learn some signs. NO ONE knows signs at that d@%* school. Not one single person. How is Carly suppose to learn when know one can understand her??? She is getting frustrated and actually very bored. She is even falling asleep in class. Which is so not like her.

Last week we had a meeting with Carly's 'team' of educators. We got nowhere fast. The principal suggested putting Carly on a reduced schedule to see how she does. We decided we would try that for only a couple of weeks. Well, Miss Carly is thrilled to be coming home. She is happy and playing. She is writing, coloring and doing her puzzles all afternoon. Oh, and she is taking NO naps while at home. She hasn't fallen asleep one single time since we started this last Wednesday. That tells me. My poor daughter is so very bored at school.

The school will not address my questions regarding them learning signs. They completely ignore that issue and turn the conversation quickly onto another subject. I've even provided them with resources regarding ASL signs. Still, they ignore me.

Today I got in touch with a local advocate group. I was told to fight tooth and nail to get an interpreter in the school. I was told that one should have already been in place. Without one, Carly is not getting the appropriate education (per F.A.P.E) that she is entitled to. I was also told to fight to revamp Carly's curriculum to her needs. So far, they have not done this. Again, Carly is not getting the appropriate education that she is entitled to.

As much as I hate having to get nasty with other people. It's time to get down and dirty. I hate that the school is forcing my hand at this. I really don't like it when I have to get nasty. However, I can and I will. I've had to do with doctors many times over, so I'm not really afraid to. I just really hate that it comes down to this. I will now be labeled "that mother" in the eyes of the 'educators'. Albeit, the advocate group put it best, "Carly is regressing". In fact, the advocate group said they were surprised that Carly isn't having behavioral issues as a result of being neglected/cheated out of learning at school.

This is why I went to that d@%* school back in the spring. I wanted to make sure that moving Carly on to first grade was the right move. I was assured that it was. Well. Doesn't look to me that it was the right move. Not if they aren't willing to meet Carly's needs. Needs that will likely need to be altered throughout her school years. I realize that Carly may not be able to keep up academically with her peers, but she is very capable of learning. She has proved that a million times over.

As for the reduced schedule. I will be putting a stop to that. It has bothered me from the first day of the trial. Carly is missing all of her xtra's. Such as ~ gym class, music and art and recess. Those are huge areas for social growth. Carly needs that so much.

Sure wish I knew why it has to be so difficult.

High School Players Inspiring Touchdown.

Such a touching story click here and to see for yourself. This brought tears to my eyes. This proves to me, that people can and do show compassion for our kids born innocently into this sometimes very scary world.

Dentist appointment.

Carly had her dentist appointment this morning. The one where she was to have her intruded tooth checked out. Remember, the tooth that jammed down into her gum after the fall off a bike at summer school? Today was the day.

Our morning didn't exactly start off smoothly. It was raining cats and dogs outside. Carly is scared to death of rain.(It's a long story, I'll tell you all about it some other time). I knew I was in for trouble due to that darn rain. I got her dressed. She freaked out hearing the rain hit the skylights in the house. We then put Hannah Montana on her boom box and blasted the house out! Only because I needed her to calm down so I could pre-medicate her before her dental appointment. I was hoping the loud music would put her in a better mood. It did for a few minutes. Until I discovered...I had forgotten to do her hair. She HATES having her hair done almost as bad as she hates the rain. I decided I had better get her med in her first. Then battle her with her hair. She ended up in tears, as usual with the brushing of her hair. Ever since she lost her hair due to chemo., she absolutely hates anyone touching/brushing/combing her hair. I've been told that some people have tender scalps after chemo...maybe so, but this is unreal. She's been off chemo since November '06. Although, before chemo., she would sit with no problem while I did her hair. Maybe there is a coloration there.

Finally, we headed out the door. I had to carry her with an umbrella over our heads to the car. She worried herself sick all the way to the Dentist all because of the stupid rain.

Once at the Dentist, she went right in and made herself at home. Scary how comfortable she is in a medical environment. I talked with the hygienist first. Then they came and took Carly to the exam room. They told me they would rather I not go back with her. Carly wouldn't let go of me. I had to pry her off me and put her hand into the hygienists hand. I was a bit uncomfortable with that. No dentist has ever told me to wait in the waiting room while one of my kids goes in for a checkup.

The dentist had me come into his office. We talked a bit. And then. BOOM! He started going on and on and on and on and on...about "special needs kids". How some are so combative and how they need to restrain them. I nearly fainted. I couldn't believe what this guy was telling me. He hadn't even met Carly at this point. How did he know anything about her? What he knew was, Down syndrome. I wrote it on her registration form. Of course, he had to jump the gun and assume the absolute worse in my daughter. I snapped back at him and told him, "Carly is NOT combative whatsoever". Finally, he caught my drift and shut his mouth.

The appointment went well. They cleaned her teeth. Did x-rays and an oral exam. No cavities!!
Which surprised me a little. Carly is not too good at brushing her own teeth, but insists on doing it herself. And, she has never been to a dentist before. Bad of me I know. Honestly, our plate was just a tad bit full the last few years. Anyway, for preventive measures and to monitor her injured teeth, she will be going in every 3 months for cleanings and an oral exam. Fine by me. I would rather make sure her teeth are getting good cleanings. We will of course have to pay for a few appointments out of pocket, but it's only $60. to have a cleaning. Money well spent in my opinion.

As far as her damaged tooth/teeth. Well, we have to sit back and hope they continue to do well. This dentist thinks they will be okay. He did discover today that her top two front teeth were also damaged during her fall off the bike. The ER didn't x-ray her top teeth. So, we now have 5 teeth to be on the lookout for. The three on the bottom and two on the top. Ugh! We have to watch for abscess teeth and rotting teeth. Nice huh? Oh, the dentist today also said that if she were to fall and bump her mouth again, it could be disastrous for her teeth. Just what a mom wants to hear. NOT! They are all permanent by the way.

They did end up putting her in a papoose. I'm not sure how I really feel about that. I mean, I want her safe for sure, but not sure she truly needed to be strapped down for crying out loud. They said she kept reaching up and messing with her mouth. It makes me wonder if that were the honest truth. She is so shy around people, I doubt she moved one single muscle during the entire 30 minutes or so. Course, I will never know because they refused to allow me in the room with her. I mean, Carly is a kid who goes in for lab work/blood draws and climbs up in the chair all by herself. She sits perfectly still while they poke her. She doesn't hardly bat an eye.

I think it all boils down to Carly having the label of Down syndrome. They think they need to strap our kids down. I beg to differ. Our kids, or should I say, my kid is not a difficult kid. She is just like every other kid out there. Sure, she may look a bit different. She may learn a bit slower, but she isn't a freak show for goodness sake. Treat her like every other kid. Not like an animal.

As we were checking out. The lady at the desk was oh so snotty. She told me that because Carly is a "special needs kid" she has to be seen early in the mornings. I said, "WHAT. Are you serious"? I could not believe what I just heard. She then went on to say, "That's what the doc said. Give her an 8:30 appointment". That didn't sit well with me at all. I told this gal that it was just too bad what the doctor says. That time will not work for us. I went on to tell her that Carly needs to be pre-medicated an hour before she is seen. So you want me to pull her out of bed and jam a syringe in her mouth and then head out the door to this place? She responded with, "yes, that's what doc said". I told her quite frankly, "too bad what the doc said. We need a time that is convenient for us". About that time, the hygienist came in and asked what the problem was. I told her before this old snot of a woman could get a word out. Finally, after the hygienist gave the snot woman a dirty look, we got a 9:30 am appointment. As we were leaving the old snot said, "we have to give the special needs kids early appoints. They tend to act up more in the afternoon". Lucky for her, I grabbed Carly's hand and headed out the door. On the tip of my tongue, was a not so nice comment that would have likely gotten me thrown out on my butt. What was it you ask? This is what I wanted to say.... "my daughter may have been born with Down syndrome and you all may look down on her for that...but at least she wasn't born with a big case of ugly like you were".

Glad that appointment is over. I'm also glad that Carly had no cavities. Shew!

Health Care Reform.

Do we need health care reform? Yes. Do we need Obama's health care reform? NO! Have any of you read any of the health care reform information? Do you realize that our kids with special needs. Down syndrome for instance, will likely be turned away if faced with the same health issues as those of 'typical children' because our kids supposedly have poorer quality of life than those of 'typical children'.

I for one am terrified of the health care reform. I already know that Carly will likely have to undergo another dreaded heart surgery in the future. Her third heart surgery. Do I want the Obama team deciding if she qualifies? I already know they don't think she does because of her being born with Down syndrome. My thoughts. HOW DARE our president and his team. How dare they decide if Carly gets heart surgery or the little boy down the hall, who wasn't born with Down syndrome, but has the same heart issues as Carly...gets the surgery before her. Then, they would place Carly on a list. A list of waiting. Waiting for a much needed surgery. A list that could take years to get through. I get chills up and down my spine thinking that a crucial surgery such as open heart surgery, would be put off. All because my daughter was born with Down syndrome.

Now don't get me wrong here. I know we need to respect our President. But, I do NOT have to agree with what he is doing when it comes to the health and well being of our country. More importantly, my daughter.

Obviously, I did not vote for Obama. I was terrified of him and the changes he would be putting in place for our country. I think he's moving way too fast. I think he has too many pots on the fire. This health care reform deal needs to be thought out long and hard. Not jumped into so quickly. Yes, our country is lacking in health care coverage for everyone. I agree, but this my friends is NOT the answer.

Trust me, I don't sit and talk politics. I don't even care much about politics. What I do care about is our country. My family. Our means to be able to provide for our family. Our freedom in America. Our lives in a non socialistic country. I'm getting very concerned as to what is going on with our country and it's leaders. I'm terrified of what will come. I do NOT think having the government involved in our health care is a, healthy thing.

I know full well there are avid supporters of Obama. As I said, I will respect him, he is our President. However, I do not have to agree with the things he is doing. Especially, when it hits so darn close to home.

As I read up on today's news on CNN.com I wonder. What do you all think about this health care reform? Do you even realize how this will effect our kids who were born with Down syndrome? So, I ask you all. Do you feel that your child with Down syndrome isn't worth doctors/specialists time and effort? Do our kids not deserve to live a life as others do? Do you want our President and his team deciding whats best for our children? I think it's time we all speak up. Let our voices be heard.

NO. I'm not a racist. My grand father who passed away 22 years ago..well, I'm sure he turned over in his grave when Obama was elected President of the USA. Me, I don't care what color a person's skin is. Red and Yellow, Black and White, they are precious to His sight. Jesus loves the little children of the world.

**This post is of my growing concerns. Concerns that are justifiable.**

I never fails...

Whenever we go anyplace, Carly is normally with us. Rarely do we leave her behind. Partly, because I don't feel anyone can watch her as closely and as well as I can. Ashleigh is fully capable, but still...no one cares for her better than I do. My mom and dad do keep her some, but honestly, they are now 71 yrs old. It's hard for them to keep up with her. As she is pretty much NON STOP! Which we are very thankful for by the way. She is a busy little girl without a doubt. Another reason that we take her with us, is simple. She is our little girl and she goes where we go. And she LOVES to go.

It never fails. No matter where we are. Be it the park, grocery store, the mall, out to eat or even on a weekend getaway. People are drawn to her. It just never fails! Most of the time, it doesn't bother us. Some people comment on how cute she is. To that, we say "thank you". Some people ask her age; and then nearly faint when we tell them she is 7! Every once in a while, I offer up the facts to her size..Down syndrome., along with congenital heart defect and the fact that she endured 26 long agonizing months of chemotherapy. Some are thrown aback, some are not. Some are very interested after hearing about it. Some, wish they never would have asked. Like maybe they could catch something from her.

It's interesting to us, how some people will just look at her and smile. Some people roll their eyes at her. Most of the time it's older ladies who do the eye rolling. I must say, that really blows my mind. I then realize, that back in their day, a child like Carly, who was born with Down syndrome., was tossed aside. Kept locked away in a room so no one would see them. Shut off from society. Left with little or no love. I really can't come up with another reason for these older women to give us or Carly nasty looks. Carly is very well behaved. She rarely acts up in public. Now at home, well - that's an entirely different story!

Something else that never fails. The complete strangers who go out of their way to ask, "is she Downs"? I always reply with this, "yes, she is a child with Down syndrome". Always. That's the way I choose to reply. They will then tell us of their sister, brother, aunt, uncle, cousin etc...who has Down syndrome. It's then quickly followed by, "aren't they the most loving people"? I'm telling you, IT NEVER FAILS! Each time someone approaches us regarding Carly and Down syndrome., they always throw in that stereotype of "so loving".

While we were on our little weekend get away to Splash Universe. We were heading back to our hotel room when approached by a very friendly guy. I noticed right away that he was smiling at Carly. I mean, he was SMILING! As we got closer to him, he did it...he asked the question. I of course gave him my reply. Then he told us, his sister had a boy with Downs. Let me tell you, I can NOT stand it when people say Downs. It's NOT Downs. It is Down syndrome. Sheesh!
He then went on just as I knew he would. Talking about how loving these people are. This time, we said, "well, she's loving when she wants to be, but she is also the most stubborn, strong willed child God ever put on this earth". To that, the man really didn't know what to say. If I'm not mistaken, I believe his jaw dropped open.

He then went on to tell us how the school mainstreamed his nephew. And that he is now 18 and is a sophomore in High School. He acted like it was really something to mainstream. Little does he know..that is the case with many of our Down syndrome kiddos. I of course told him that Carly is also mainstreamed and will be going into 1rst grade in the fall.

Don't get me wrong. This guy was not obnoxious at all. He was really quite friendly. We were friendly back. Talked a little and then headed on our way. As we got to our room, Paul finally spoke. These were his words, "why do people think kids who are born with Down syndrome are so much different than anyone else"? Of course, I had no answer to that question. He then said, "can't people see that Carly is a child like every other child, that she really isn't all that different"? We talked a little about it, but then quickly turned our attention back to Carly and her playful, silly, little self.

No matter where we go. What we are doing. I never fails. Someone knows someone who was born with Down syndrome. Or Down's as most call it. Honestly, I appreciate those people who take the time to ask us questions about Carly. The one's who bother me, are the older ladies who just stare at us like we have a freak for a side kick.

Regardless of what anyone thinks regarding Down syndrome. Our love for Carly will never fail. We are so blessed to have been given this very precious little girl. We are thankful for her every single day.

Umm..some people need to get a clue!

I was up early this morning. In fact, I was up before the start of the Today Show. I rarely, if ever get to watch morning T.V. Carly beats me to the T.V. and I usually busy myself with morning chores. Anyway, today I thought, what the heck. Carly was in her sisters bedroom, while Ashleigh was getting ready for work. So, I tuned into the Today Show. One of the first stories was about the husband and wife in Florida who were murdered the other day. This couple adopted special needs kids. They actually had adopted several children who were born with Down syndrome. Naturally, whenever I hear the words Down syndrome, my ears perk up. The story starts, which by the way, makes me sick to my stomach. The commentator starts his bit. Then, I hear it...the phrase that never sits well with me, "many of the children suffer from Down syndrome." Oh, I really don't like that phrase. Who the heck is this guy anyway?? He's suppose to be educated right? I mean, he is a news guy. Obviously, he knows nothing about Ds.

Sadly, people do say things like this. Is it because they are stupid? Uneducated? Arrogant? Or is it because, that's what people really believe? Do they really believe my daughter suffers because she was born a child with Down syndrome? If that's the way they think. They need to get a clue! And they really need to spend some time with Carly. She does not suffer because she was born with Ds.

Yes, Carly has had many of the health issues that coincide with Ds. Such as heart issues, thyroid issues and leukemia. She does have a cognitive impairment. But, suffer? Not so much. I suppose some people would say that it's directly related to Carly being born with Ds. However, any child can be born with thyroid issues. My cousin has a son with severe thyroid issues. He was not born with Ds. Any child can be born with heart issues, just like Carly's. Anyone can develop leukemia. Many children suffer from cognitive impairment. You don't have to have been born with Ds to have any or all of these issues. Get a clue!

Carly is happy, loving, forgiving, eager to please, smart, witty, silly, non fearing, one of the bravest little gal's I have ever known. Don't get me wrong. It's not always wonderful. She, like other children has bad days. She can be naughty, stubborn as all get out, sassy and disobedient. She is so much more alike, than she is different from all kids. Again, get a clue!

I suppose, it's due to the fact that people who aren't around a person born into this world with Ds., just don't know anything about it. They don't take the time to educate themselves on it. Why would they, if it doesn't effect their lives? At any rate. I hate this phrase,"suffering from Down syndrome".

It's really interesting to me when we are out and about with Carly. We encounter people in stores, at parks, restaurants and so on. Some do stare at us. Some even give us dirty looks. The dirty looks usually come from little old ladies. Can you believe that? Some people have actually asked "does she have Down syndrome"? I say, "yes, she was born a child with Ds". I've even heard this as a response, "really? she doesn't really look like one because she's cute." Can you believe that?! Then there are those who really have no idea that Carly was born a child with Ds. Most people just marvel over her. Usually, I offer the Ds portion up after I've been asked how old is she? Carly is very little. She does not look like a 7 year old. Most people think she is 3 or 4. So, when I mention that she is indeed 7. Their eyes about pop out of their sockets. Sometimes, I go into the whole explanation of why she is so small. I tell them that she was born with Ds. I tell them of her health issues too. To that, most shut their mouths. Like maybe they've just opened Pandora's box or something. Once in awhile, they are curious. They even ask questions. That's OK with me. I would rather they ask me questions and LEARN a bit about our kiddos. Like I said. They are more alike than they are different.

Last week, Ashleigh had a delivery dropped off by the Fed X man. Carly and I were outside. She was jammin' to Miley/Hannah that happened to be playing on the boom box. I signed for the package and the guy says to me. "Oh she's a doll. What's her name?" I told him thanks and clued him in on her name. He went on to tell me that he has a brother who is 47 years old that was born with Ds too. We talked a little. I found out his brothers health is slipping. Up until the last year, he was healthy as a horse. This guy absolutely loved Carly. He went to his truck and came back with a pencil bag full of goodies for her. Most likely, we will see him again today. Brad has a delivery expected at some point.

So, I suppose it all boils down to the fact that people just do not understand what Down syndrome is. People don't understand how those who are born with Ds, don't necessarily suffer any more than anyone else born into this world. But, for a news guy/gal to make a stupid comment. Well...they need to get a clue!

Yesterday

Yesterday Paul and I had doctor's appointments. We both have terrible backs. Our doctor, who is a D.O. and does manipulations/adjustments, tells us it's due to lugging Carly around. Every single time that we go, the doc asks us, "are you still carrying Carly around?" Um, yes...she is very stubborn and sometimes decides she would rather do her own thing and the heck with us. For example. She likes to walk while we're in the grocery store. OK, fine. We let her walk. However, she suddenly sees something of interest and splits. We don't lose her in the stores, but for the life of us, we cannot get her to continue on our way. You know, the way she was going before she split! So, yes, sometimes we do need to pick her up. I kid you not, she is the most stubborn child I have. Which in turn, leads Paul and I heading to our doctor about every two weeks for adjustments.

After leaving the doctor yesterday we decided to go our for dinner. Well, Carly of course started in. McDonald's was on her agenda. Although Paul and I had no desire to eat fast food. We headed for Cracker Barrel (CB). You might know, it's two doors down from McDonald's! Carly didn't raise too much of a ruckus though. Once we got to CB, Carly made her way to the many toys that they carry in their store. No mention of McDonald's after that!

We were seated. Placed our orders. Chatting and coloring with Carly. I then felt the presence of eyes upon us. Sure enough. I discovered an older lady just staring away at Carly. It was so obvious. Although, it didn't phase Carly in the least. It bothered me. I mean come on. We're a family out to dinner....do you really need to STARE at our daughter?!? Did this lady see something I didn't see. Is my daughter green, purple, orange...what the heck? We went on with our chatting all the while knowing this lady was still staring.

Our salads came and we were getting Carly squared away. She always takes my salad plate away from me :o( ! I do give her some of my salad each time. I put some on a small plate for her. Oh, but that's not good enough. She still takes the big plate and leaves me with the little one! Stinker. Paul, for some reason, likes to put salt on his salads. YUCK! Well, this time Carly saw him. So, she too had to go for the salt shaker. Just as I reached to take it from her, she proceeded to lick the top of the shaker. I nearly fainted when she did that. I did get a wipe out and tried my best to clean it off. Although, I was more worried about the germs she picked up from doing the licking. GROSS!

Again, I felt those eyes. Sure enough the old woman had her eyes glued to Carly. She had seen the entire licking incident. Good grief, she was rolling her eyes now. That did it for me. I looked at Paul, who couldn't see the woman from where he was sitting. I spoke quite loudly, loud enough for this old woman to hear me for sure. Here is what I said, "That old lady will not stop staring at Carly. She must think Carly's a freak. She saw her lick the salt shaker and rolled her eyes. You would think she would look away, but no......I swear, some people are just too nosey for their own good." I'm sure the lady did hear me. She finally turned away. I don't normally do things like that. Get nasty and make nasty remarks. But for crying out loud. ENOUGH already. That rolling of the eyes just pushed me over the edge. Don't get me wrong. I did scold Carly for licking the salt shaker. I explained to her that other people use it and now its dirty and yucky. I tried to explain that you get your germs on it by licking it, too, but that may have been a little too much for her to grasp.

I know all of us mom's out there with kiddos who have Down syndrome go through this almost daily. I normally just let it roll, but last night. This old lady just rubbed me wrong. I don't see the need in people staring. I guess if my kid was screaming, throwing food, not sitting still and so on..OK, that may warrant a few stares. But my kid who is sitting still, minding her own business, behaving herself, (except for licking the shaker) enjoying herself spending time out with her family...getting comments from waitstaff on how well behaved she is. Doesn't need to be stared at. She is a child for goodness sake. STOP staring already.

I'm very happy that yesterday is just that. Yesterday. On with today!

Sweet Carly

I guess my first post will be about our sweet little Carly. Much to our surprise, she was born with Down syndrome. Although I wouldn't trade Carly for the world. I would, if I could, take away all of her health issues. Although, she does seem to march through it all with flying colors.

After just saying I would take away all of her health issues, I realize that I would and do say the same exact thing with my other two kids. So, all in all NO, I wouldn't trade one darn thing about Carly. She is who she is and we LOVE her to pieces.

Last week was a rough week. Carly had some sort of viral bug causing quite a bit of diarrhea for 10 days. . . ugh! We also had to go to the Oncologist and Cardiologist on the 14th. Carly's platelet count was kind of low. Not something you want to see after battling leukemia. However, all of her other blood counts were great. Her blood did show that she had a viral bug present. The doc thinks that maybe why the lower platelet count surfaced. We pray that's why.

On the 21st Carly will go back for another CBC (complete blood count) to check how her platelets look. They really need to show some recovery. If they do, we will chalk it up to the nasty viral bug she had. If they don't, then we will be chatting with the doctor on just what needs to happen next. Please pray for Carly and our family. I really don't want to think about what may happen if her platelets don't recover.