Saturday, December 8, 2007

I'm here... I'm here...

Laura is always good at reminding me that I need to post. Seems like lately with working, all my drs. appointments, having a rambunctious 3 year old, a house to try and keep clean, well, the blog is low man on the totem pole. My brain and fingers are usually just too tired!


C- She is doing FANTASTIC!!! She can count to 5 now (with a little prompting) and says short sentences. Of course tonight the sentence was "Go away Mom" with the hand wave to back off. She is big on "No, stop" with the hand in the air like Diana Ross singing "Stop in the Name of Love". I am mama when she is being all sweet, but more often I am MOM!!! She is a 38" tall 14 year old!!! She always wants to wear her black patent leather boots, likes to boss everyone around and has an overall attitude. Preschool is going great. She still loves the bus and I credit a lot of her speech to them doing such a great job working with her and telling us what to do at home as well. She is just growing up in leaps and bounds!

Pregnancy Update-
Due Date- January 16th
C-section Date- Most likely January 11 at the latest
Term- December 23
Mom's instinct is the baby will be here before Christmas

I am going x2 per week now. 2 non-stress tests a week, 1 fluid level check and 1 dr. visit crammed into those 2 days. I was found to again have low fluid. We aren't sure why but apparently my kids just like to wade in shallow water. I also pass my 3 hour glucose before Halloween. Well, at an ultrasound, the baby was found to be in the 97th percentile. That large size warranted a repeat of the 3 hour glucose and sure enough, didn't pass this time. We are just controlling it with diet changes and once a week blood testing. If all stays well there, we won't have to change that plan. Otherwise, feeling well (just tired) and loving the baby moving and bobbing around. We have decided on boy names but have not found anything we agree on for a girl name. Guess that means it will be a girl huh?

Well, I think that's all new here. Just getting ready for the holidays and for baby!

Here are a couple of pics of Miss C one brand 2 new belly shots. (it's a BIG belly!)

Wednesday, October 17, 2007

Have to add one more thing I LOVE!

C has started to aim for puddles. Any puddle she can find. We have to go out of our way, she gets so excited saying "WATER" and then splash, splash stomping as hard as she can for the biggest splash. She then has to point to her shoes and way "wet".

Not sure which I love more, seeing her splashing in the puddle or hearing her talking and saying water AND wet!

Saturday, October 13, 2007

Things I love!

I was watching C the other day and thinking about the things I love. The things that to me are the simple joys in life.

1. I love seeing kids, especially mine, in footie fleece jammies.

2. I love watching my belly now popping and jumping all over the place. It just amazes me and makes me feel so blessed that I have been given this change to create another human being.

3. I love waking C in the morning. Stroking her cheeks with her hair over her eyes and that sleepy little smile and the morning whisper of "bus". (her favorite thing now is to ride the bus)

4. I love having C say nite daddy and hold my hand to walk in and brush her teeth before bed. Then her sitting on her bed with her hands together while we say prayers... it's just too sweet.

5. I love that we have lots of wonderful family and friends in addition to all of my online friends.

6. I love to come in from work and have C run up and hug my leg saying "Hi mama!"

7. I love watching C dance. The girl just lives for music!

8. I love having a little girl that likes to wear her dance skirt and black boots with her pajamas.

9. I love C's voice. (when it's not being used for a full blown tantrum)

10. I love that Ben and Jerry's now has a light version or Phish Food ice cream that tastes just like the original version. (see, they weren't all about C)

Saturday, September 29, 2007

Simply said...

I just love being pregnant!

Sunday, September 23, 2007

The most unwanted "Club" there is...

We have 2 friends kids and emotions swinging from one way to another in only a matter of a few days. These families are states away from each other and have never met, yet they are now in the same club that nobody ever wants to join. Then are both in the "I hate Cancer" club.

I have known Mike since the 10th grade. We dated on an off but always remained friends. He moved out of state and married. We still kept in touch some, but usually by e-mail. I was surprised to hear from him in July of 2004 by phone. We talked for a while and I told him all about our pregnancy with C and all we had gone through to get there. He then dropped a bomb on me, their youngest son P had been diagnosed with acute lymphocytic leukemia at the age of only 5!!! They sure have been through a lot but we got the EXCELLENT news on September 18th that he had finished his treatment. He will still be monitored closely but treatment is done!

Nichole is someone I met on line. Her daughter A and our C both have Down syndrome so that was our bond. That and our living in the same state and our kids being very close in age. C is 3 and A is 2 1/2. We vacation a few weekends a year near where they live and when we have gone, we have done our best to get the girls together. On September 17th, A's mom noticed a rash on her and took her to be checked out. As of 2:00 am on Septmeber 18th, (the same date that P had his last treatment) they were in a hospital 2 hours away waiting for what looked sure to be a diagnosis of Leukemia. They learned on September 21st that A does indeed have Acute Myelogenous Leukemia. She will have to be in a hospital 2 hours from home, her 3 brothers and her everyday life for 3-4 weeks at a time and 10 day visits home in between.

I can't in anyway relate to what either of these parents are going through. We are so happy to see one at an ending point but so very sad to see another at the beginning of what can be a long journey. I can only hope that A's journey goes as well as P's did.

Please give both families any prayers, positive thoughts you can and hug your little ones tight and be sure to appreciate every little thing about them. There is no greater blessing then a child.

Friday, August 31, 2007

The test results are in!

We learned today that the results of the amnio show the baby has no genetic disorders. We are bery happy and relieved to go forward being able to relax and not worry about having that big surprise we had after Cs birth. Don't get me wrong, I wouldn't trade C for anything in the world, but there is some comfort in knowing that we won't have to go through those early worries that we went through with C.

We will now have one girl with designer genes and one boy? / girl? with the regular style!

Sunday, August 26, 2007

An update...

Well, I did let it out here that C is going to be a big sister. I suppose I just can't leave people hanging so here is the latest.

Tuesday we went in for our big ultrasound and an amniocentesis. The decision to have the amnio was not an easy one and one I really didn't 100% decide on until the very moment. Unfortunately people assume you do an amnio to check for Down syndrome. Sadly, that is how the test is most often represented. That it is to test for chromosome/genetic disorders such as Down syndrome and Spina Bifida. Well, it test for over 400 different things. Because of our age risk and the surprise of C's Down syndrome, we decided to go ahead with the test. We want to know what we are dealing with and not have that huge shock that we had after C was born. So, that said...

The ultrasound went great. The baby was measuring right on target and all organs and features were easily seen, measured and checked out great. The baby was moving all over the place and of course, the announcement everyone wants most... It's a.................


Sorry, you have to wait until the big day to find out just like we will.

Now, for the amnio, the wait was the worst part. I was literaly nauseous that morning and when it came down to it, the test took only 1 minute. I really didn't even feel the needle (of course, I do give myself 2 shots in the abdomen every day) and it was done in no time. Came home that day and literally laid on the couch all day with only a few well needed trips to the rest room. From the couch, went right to bed and that was it. I was careful the next couple of days as well, being careful not to lift anything and just kind of take it easy. Luckily, we have appeared to get by with no complications at all.

To those of you who have gone through the journey of trying to conceive, you know the term 2ww (2 week wait) all too well. We have been in the 2ww many, many times but I think this is going to be by far the longest 2ww I have ever had. We expect results on the 31st of August at the earliest. Please cross your fingers for us and I'll post back the results when we get them.

So that's the latest on the pregnancy. Now C and the pregnancy. I don't think she really gets it all. She is very sweet and if I ask her to kiss the baby, she will kiss my belly and lay her head on it but I don't think she really "gets it" yet. One example, dh and I were sitting on the couch with her. I said, "C, give the baby a kiss" and she leaned over and kissed dh's belly. Um..., no, he doesn't not have 6 pack abs and since he appears to be having a sympathy profile belly, it was a riot and we both had to laugh. So, she may not get it now, but she sure will soon enough. :o)

Since I don't believe in doing a posting without a pic (cause we all know people don't care about the stories, we just like the pictures) so here is one from our weekend.

Sunday, August 5, 2007

Pet Peeve - A pet I do not like

Someone in a place I post asked about pet peeves and it made me put one in writing. (I won't bore you with the others)

I hate and get so annoyed when people say "C is doing so great?"

To most parent this would be something they would be happy to hear. What do I want to hear?

"C is doing so great!"
"C is doing so great?"

What is the difference. It's that tone in the end. It's not a true question mark as much as a tone of suprise. It's not a tone of expectation.

It make me feel that people have very low expectations of C. That they have very low expectations of people with Down syndrome. From this also comes the response that I heard from so many people when C was born. About how people with Down syndrome could have jobs. That they know of people with ds who work at McDonalds. Now don't get me wrong, I have nothing wrong with someone working at McDonalds. Heck, if nobody works there, how would I quench my occasional pregnancy craving for an egg and cheese bagel. What I don't like it people assuming that that is the highest aspiration for her. Yes, if she wants to work there, she can. Of course, I also know of people with Down syndrome who work at University deparements, who are sign language interperters, at daycares... jobs I am guessing most people didn't see possible.

Yes, C is fantastic and she is doing great!!!!!! I say that with multiple exclimation points because I am happy that as my daughter, she is so smart, so sweet and so happy. I don't say it because I am surprised. She has been a big surprise since the moment she was conceived... her success is far from a surprise to me. I knew she had it in her all along.

Tuesday, July 24, 2007

Self Portrait...

Don't mind the hand smudges. This was taken in Chicago at the big Cloud Gate sculpture.

Saturday, July 21, 2007

Where is the pure joy?

I was at a spa party last night. Word is spreading that we are pregnant so lots of congratulations. I feel so bad everytime because I just really have to paint on a smile and I know some people can see it's not genuine. Don't get me wrong, I am so happy and excited about being pregnant. It's just that with our miscarriages, I just can't relax and enjoy the moment. I always have to paint on the smile and say "thank you"... say that our fingers are crossed... say everything is going well for now. There is no future planning. No name books, no pregnancy books, heck, I only got out the maternity clothes because my pants were getting snug.

Call me selfish but I want the joy. I want to be one of those women who tells everyone they are pg before the pregnancy stick even dries. I want a husband so excited that he picks me up and spins me around in excitement. I want that joy but sadly, we have been robbed of that. The miscarriages robbed us an instead left behind scared, cautious and cynical people.

We just instead give our disclaimers, give the fake smile and show everyone the crossed fingers.

Friday, July 13, 2007

I love being a "family"

For years I wanted to be a "family". We were a "couple" for so long and I envied people who could do all of those "family" things. Don't get me wrong, the freedom of "couple" was great but I wanted something more.

Tonight was one of those "family" times. We went to the local park for the weekly free concert. It was great! We met friends and had a picnic before the concert started. C had a blast and she made sure everyone around her did too. She was dancing away in the way that only my girl does and everyone was enjoying her Saturday Night Fever moves. We got ice cream, danced and just had a good time being a "family".

I know it's not what everyone wants, but for me, "family" is the greatest gift I have ever been given.

btw... our family is set to expand in about 27 weeks or so!

Wednesday, July 4, 2007

shhh... don't ever tell people you like to take pictures!

Here is how it started...

Her: Wanna go walk around the store?

Me: Sure (with hesitation)

H: Hey, I hear you take pictures.

M: Well, I have a decent camera and take lots of pictures of C.

H: What are you doing Sunday? (this is on Tuesday)

M: Why, do you need pictures for the newspaper? (thinking engagement annoucement)

H: No, a wedding. (laughs)

M: Oh no, no, no... I don't do weddings. No, no weddings!

Well, to say the least she talked me into it. It was a very small family affair in someone's home. They were not looking for a 20x24 portrait, just a documentation of the day and pictures of her with her grandmother. They are going to have an official wedding next June (long story but I understand the reasoning) but her grandmother is elderly and she is afraid she may not be here by then. That's right... she guilted me with the elderly grandmother ploy!!! (she herself will make a wonderful mother one day with guilting abilities like that!)

So, Sunday came and I think I was as nervous as the bride. I had discussed the images she would like to capture. My battery was 100% and the memory card was empty and ready for lots and lots of pictures. The day was beautiful as was the bride and off it went.

I think it went pretty well. I had a good time and ended up spending a lot of time on editing to just clean up little things but I think they will be happy with the end result.

Note to self and others too... if you take photos... keep it to yourself! It was fun, worked out well but the thought of not doing a good job had me stressing myself out!

Tuesday, June 19, 2007

The little things that can make me a little sad...

Through having C and knowing friends who have babies who have gone through intestinal surgery, open heart surgery, leukemia and having friends who have had late pregnancy losses... well, I feel silly over something so small.

We went to the eye dr. today. C's eyes have been crossing some. I guess I was just prepped that we were going to do surgery. I was ready for surgery, I was not ready for glasses.

She really does not need them for her actual vision. She is crossing one eye and not focusing as well as she used to. The dr. is hoping that by doing the glasses (bifocals at that!), she will strengthen by learning to focus better. That in turn will stop the crossing.

Maybe it's because I didn't get glasses until I was 39, and even then, I only wear them a couple times a month when my eyes are tired at work. Maybe it's because I was just noticing how amazing the colors of her eyes really are. I am afraid that the glasses will take away from that.

It doesn't matter what my problem is because yep, "Miss feisty, I WILL not even keep a barrett in my hair or a hat on my head", needs glasses. Realistically I have NO idea how we will ever keep glasses on her. I think soon enough the battle to keep glasses on a very strong willed 2 1/2 year old will make me forget all about what my problem was after all.

Saturday, June 9, 2007

See... We're Not Always Happy!

One of the things that annoys me more than any other steryotype about Down syndrome is the comment... "they're always happy." I don't know who came up with that idea, and I know any parent of a child with ds would agree, but they are far from happy all the time. C is such an expressive and dramatic girl. I love that about her. She is 2 1/2 and has full blown temper tantrums and believe me, she is NOT happy when it is happening. Wanna know what makes her even madder during a tantrum? When mean old mommy gets out her camera to have documented proof. PEOPLE WITH DOWN SYNDROME ARE NOT HAPPY ALL THE TIME!

Here is my proof. (don't mind the red tongue, she was eating strawberry fluff before the drama began)

Monday, June 4, 2007

Time marches, ok... full out runs, on

Wednesday is a big day. Only 2 more days and C will move from the early intervention program that we have known for 2 1/2 years. She started when she was a mere 10 weeks old. I can't believe how much she has grown. On that first day she met her first "friend" A. He is only 6 days older then C and he also has Down syndrome. We were very lucky to have someone else so perfectly matched up to us. Someone who understood the emotions and that we could meet and play with in real life. C & A have grown and so have us moms and dads.

Wednesday C & A move on to the next phase and become preschoolers. How in the world did this happen. Time has flown by and created this amazing little person who is going to just take in every new adventure in pre-school and breathe it right in like she does with everything in her life.

I love my preschooler so much!

The first day of school.

Walking through the hall at school last week!

Tuesday, May 22, 2007

Of all the darn places to meet a friend...

Miscarriage and pregnancy loss is a life changing event. We have had the "event" 8 times now and it is a terrible, heartbreaking thing to go through. In the beginning I often wondered why we were made to suffer so much. I had so many people during those times say that things happen for a reason. While it still sucks... I think I found the reason.

Through our miscarriages I made friends I never would have met. We found each other on the internet over 5 years ago. We had all had multiple pregnancy losses and all stuck together and got each other through additional losses. In addition to those losses I can also say that as a group, in just over 5 years, at last count, we have celebrated the births of well over 25 healthy babies!

C's birth lead me to more new places with new friends who I had something in common with... nothing better then someone going through what you are to be able to understand like nobody else ever can!

While I would never wish our sadness on anyone, imagine the joy of walking into a house and hearing "surprise" from your internet friends who came from all over the country to throw you a surprise baby shower! Yep, they flew in just to shower little C with love and gifts. (see some pics below)

Tonight I was lucky enough to meet one of my local mom friends for dinner. We are trying to meet every month but will have to take a month or so off because she is expecting her 2nd baby after 3 losses.

I have found some amazing people on the internet and while yes, we all know there are some creepy people out there, I have learned from all of my friends from many different areas that there are more amazing people out there then you can even imagine!

Thank you to all of my internet friends for being there!

Monday, May 21, 2007

You say that like it's a bad thing...

I hear it all the time. C is stubborn just like me. The other word used is manipulative. Many people see those as bad words. For me, as the parent of a child with special needs, I consider those words to be good words! You say it like it's a bad thing.

Yes, C is stubborn. That stubborness has served her very well. It's what made her so mad and determined to sit up, pull to standing and walk. Stubborness makes her the determined little strong willed girl that she is and personally, I don't think it's a bad thing.

Yes, she is also very manipulative. I guess I was selling her short. I am still amazed at the way she manipulates people (myself included) and many others in her everyday life. She is cute, she knows it and she uses it. I have to say, when I figured out that she was really thinking to manipulate a situation to what she wanted... I was so happy. I didn't see it the way many parents do. I saw it as a real cognitive skill on her part to access the situation and then take advantage and spin it into what she wanted.

They say the apple doesn't fall far from the tree. Yes, she is stubborn and manipulative but what can I say... that's my girl!

Sunday, May 20, 2007

An Update on Gabe

Gabe is home and doing amazingly!!! 4 days following open heart surgery and he is home and looks like his perfect, beautiful self!

Wednesday, May 16, 2007

Cheerios everywhere!

What ever happened to my car. Yes, I was one of THOSE people. I had a nice neat car. Everything was in it's place. Compartments held what they were meant to hold. I had this cute little docorative $5 packet of keenex that where pink with high heeled shoes on them. There was room to fit 3-4 other people comfortably and neatly. (Well, maybe a dog hair here or there)

Now, there are Cherrios and Apple Jacks all over my car. The seats have water stains on them from those fabulous "no leak" straw cups that manage to leak out their entire contents between our house and the end of the driveway. My cute design kleenex have been replaced by a full size box of lotion kleenex and a plastic bag to try and keep all the used ones in one place. I now have 2 strollers in back, a basket full of toys seatbelted into the backseat and a bag of goldfish crackers are the snack du jour.

C has changed ever single part of my life and I wouldn't trade it for anything in the world... and don't even get me started on the mess in the house!

Saturday, May 12, 2007

Some Mothers Get Babies With Something More

I have always loved this piece. With Mother's Day approaching, all I can say is I am so very lucky that I got the "Something More"!

Some Mothers Get Babies With Something More
Lori Borgman - Columnist and Speaker

My friend is expecting her first child. People keep asking what she wants. She smiles demurely, shakes her head and gives the answer mothers have given throughout the pages of time. She says it doesn't matter whether it's a boy or a girl. She just wants it to have ten fingers and ten toes.

Of course, that's what she says. That's what mothers have always said.

Mothers lie.

Truth be told, every mother wants a whole lot more. Every mother wants a perfectly healthy baby with a round head, rosebud lips, button nose, beautiful eyes and satin skin. Every mother wants a baby so gorgeous that people will pity the Gerber baby for being flat-out ugly.

Every mother wants a baby that will roll over, sit up and take those first steps right on schedule (according to the baby development chart on page 57, column two). Every mother wants a baby that can see, hear, run, jump and fire neurons by the billions. She wants a kid that can smack the ball out of the park and do toe points that are the envy of the entire ballet class. Call it greed if you want, but we mothers want what we want.

Some mothers get babies with something more.

Some mothers get babies with conditions they can't pronounce, a spine that didn't fuse, a missing chromosome or a palette that didn't close. Most of those mothers can remember the time, the place, the shoes they were wearing and the color of the walls in the small, suffocating room where the doctor uttered the words that took their breath away. It felt like recess in the fourth grade when you didn't see the kick ball coming and it knocked the wind clean out of you.

Some mothers leave the hospital with a healthy bundle, then, months, even years later, take him in for a routine visit, or schedule her for a well check, and crash head first into a brick wall as they bear the brunt of devastating news. It can't be possible! That doesn't run in our family. Can this really be happening in our lifetime?

I am a woman who watches the Olympics for the sheer thrill of seeing finely sculpted bodies. It's not a lust thing; it's a wondrous thing. The athletes appear as specimens without flaw - rippling muscles with nary an ounce of flab or fat, virtual powerhouses of strength with lungs and limbs working in perfect harmony. Then the athlete walks over to a tote bag, rustles through the contents and pulls out an inhaler.

As I've told my own kids, be it on the way to physical therapy after a third knee surgery, or on a trip home from an echocardiogram, there's no such thing as a perfect body. Every body will bear something at some time or another. Maybe the affliction will be apparent to curious eyes, or maybe it will be unseen, quietly treated with trips to the doctor, medication or surgery. The health problems our children have experienced have been minimal and manageable, so I watch with keen interest and great admiration the mothers of children with serious disabilities, and wonder how they do it.

Frankly, sometimes you mothers scare me. How you lift that child in and out of a wheelchair 20 times a day. How you monitor tests, track medications, regulate diet and serve as the gatekeeper to a hundred specialists yammering in your ear.

I wonder how you endure the clich├ęs and the platitudes, well-intentioned souls explaining how God is at work when you've occasionally questioned if God is on strike. I even wonder how you endure schmaltzy pieces like this one -- saluting you, painting you as hero and saint, when you know you're ordinary. You snap, you bark, you bite. You didn't volunteer for this, you didn't jump up and down in the motherhood line yelling, "Choose me, God. Choose me! I've got what it takes."

You're a woman who doesn't have time to step back and put things in perspective, so, please, let me do it for you. From where I sit, you're way ahead of the pack. You've developed the strength of a draft horse while holding onto the delicacy of a daffodil. You have a heart that melts like chocolate in a glove box in July, carefully counter-balanced against the stubbornness of an Ozark mule. You can be warm and tender one minute, and when circumstances require, intense and aggressive the next.

You are the mother, advocate and protector of a child with a disability. You're a neighbor, a friend, a stranger I pass at the mall. You're the woman I sit next to at church, my cousin and my sister-in-law. You're a woman who wanted ten fingers and ten toes, and got something more. You're a wonder.

Happy Mother's Day.

Tuesday, May 8, 2007

A Moment for Gabe

Please do whatever you do, prayer, sending strong healing vibes... whatever to help Gabe and his family be strong and make it though his next heart surgery. Feel free to follow the link, read his story, see what a beautiful boy he is, what a beautiful family he has (including Miss E.J. who is blessed like my Miss C) and add the link to your blog as well.

Feeling the Love across Cyberspace

Sunday, May 6, 2007

A monster has been created!

Well, it's done. The camera is purchased (although I did go with the D40 instead of the D40x) and well, I need to walk away from the camera.

C and I headed to the mall at 9:30. Got there, walked into the store, asked about the D40 vs. D40x and opted for the D40. Said I needed the memory card, any additional hardware, camera bag, shoulder strap and of course the camera. The sales guy was looking at me like I was a crazed shopped. I assured I am not some irrational compulsive shopper who would be returning it soon. I had done my research and was on a mission. We left the mall by 10:30 and headed home. Home by about 11:30 and the frenzy began. From 11:30, minus C's nap, the cable guy being there and a trip to the market, I still managed to fire off 274, YES!!! that's 274 pictures!

Today was a better day as far as my new addiction, only 126 images today.

Here are a few of my favorites and you can check out the Flickr box to the right to see more. Don't worry, the entire 400 images are not all there!

Friday, May 4, 2007

Tomorrow is my new camera day...

Yet another non exciting post. (well, to you maybe)

I am so spoiled. Tomorrow I get to go and get my new camera! My new DSLR!!! I am so excited. I got a lot of gifts to put towards it for my birthday and the rest is from my hubby.

Of course, I on the other hand am a spectacular wife... look what he gets to get!

Tuesday, May 1, 2007

Aw man!

Tonight I joined a friend for dinner. In my 42 years (remember, I turned 42 yesterday), ok, only 26 of that with a drivers license, I have never had a parking ticket. Yes, I have had my share of speeding tickets, but never parking! Well, tonight my streak ended. I came out to find that little slip of paper on my 5 minute expired car.

Aw man!

Tic, tic, tic!

Tried to post this last night but the computer was not cooperating...

Well, my 42nd birthday is almost over. It was a very normal day. Traffic and a typical work day. At home we just did carry out and played outside with Cfor a while. Then 3 loads of laundry. A shower and now I am online. Nothing glamorous. Not quite how I had envisioned my birthdays a while back.

This is not where I expected to be in my life at the age of 42. I thought I would be happily married, a happily working mom in a graphics job I loved. 2 or 3 kids who would all be about 7 to 10ish and enough money to be comfortable.

Well, we are fine on the money part but other parts, not so much. I have zits on my face like a 13 year old this week. I am pretty happily married but very unhappy at my job. I have one living child and 8 angels in heaven.

The big kicker is never in my image of the future did I see myself as a parent of a child with "special needs". Nope, that was NOT in the picture. Of course, I did indeed luck out. The picture is more perfect then I had imagined. I have many wonderful friends, I have wonderful family I have a pretty ok husband some days and I have a beautiful daughter that I could not imagine being any more perfect.

It may not be the future I was dreaming of but it is as it was meant to be and I am one lucky 42 year old.

Friday, April 27, 2007

She will not go unnoticed!

I know my mother taught us not to stare. Personally I don't think it's as offensive as mom made it out to be but tonight was different.

I have had many occasion where I have caught people staring at C. Most of the time I can see it's a good stare. Sometimes I am not even sure they realize she has Down syndrome. Tonight the ones we were getting seemed different and it made me wonder.

We were at dinner. Everytime I looked up at a woman having dinner with her family I would fine her staring at Cbut never in the way I am used to. It was a stare of almost anger or the look of not accepting us being a regular family eating dinner in a regular restaurant with a regular 2 year old.

I often wonder, did this person terminate a pregnancy with a child with Down syndrome? I know women who have had that happen and the starer says how they look at their child with sadness. That the information they were given was of a life nothing like what they were viewing. They were sad because of what they had lost due to not knowing and bad information.

Did this person have a sibling that had Down syndrome 25 years ago when the life expectancy was a mere 25 years old? Did they have a brother or sister that died at a young age and they see C as the future of Down syndrome. The future their brother or sister helped pave the way towards.

Is it curiosity? Do they see her and think how wrong the image of Down syndrome is.

I don't know, but in this case, I am a bit puzzled by nothing more then the fact that I have yet to see a single staring person not have to smile when C waves bye bye. This woman did not and I felt so very sad for her. Whatever her reason for her anger and sadness, she missed out on Cblowing a kiss when she chose to not acknowledge her. My girl refused to go unnoticed!

Tuesday, April 24, 2007

The story of C...

I wanted to share C's birth story out here in cyberspace. I found the stories that others share so helpful. Especially when they described the true emotions they felt. It let me know that my feelings were ok and that it would get better.

We were so happy to be expecting our baby. We had 6 pregnancy losses and finally we were down to the end of the pregnancy. A date to induce had been set and I was wrapping up everything at work to be ready to stay home on maternity leave with my healthy baby.

It was decided to induce early due to very low amniotic fluid. The induction dodn't go very long before the baby was in distress due to cord compression because of low fluid. The dr. recommended a C-section and I didn't care how the baby got here as long as he/she was fine.

At 12:19 am C was born. That cry was the most beautiful sound I have ever heard. She was brought to me quickly and then wisked off to the NICU. She was 3 1/2 weeks early so we knew she may need a little oxygen.

45 minutes later our whole world came crashing in. The neonatologist came in and told us that C was breathing well. I was so glad... she was fine. He then went on to say the worlds I will never forget. He told us that our daughter, the one we had waited for for over 6 years had facial features consistent with Down syndrome. I remember shaking my head over and over and over. I just covered my eyes crying thinking could shake my self awake, shake the words out of my head. I looked at my husband and he had no color left in his face. I was telling him to sit down. I was so afraid he was going to faint. It was all so surreal. It was a true out of body experience. The drs left us alone and my husband asked the nurse if we could have the room to ourselves. She brought me a box of hospital kleenex and I remember thinking that the box was way too small. I needed a lot more kleenex. She left the room and waited in the hall. I cried harder and more than I ever have in my whole life. I had lost pregnancies but this loss was 1000 times worse.

The nurse came back and said our room was ready. They said they would take us to the nursery on the way up to the room so we can see her. In the moment I regret more then any other, I said no, I didn't want to see her. The baby I waited for so long, prayed for, the one whose heartbeat I listened to with a smile everyday for the last 5 months, I didn't want to see her. What kind of mother doesn't want to see her own child?

I remember the lights going up to the room. light, ceiling tile, light, ceiling tile... all the way up to the room. The nurse taking us to our room asked what we had. Obviously she didn't know about the ds right? If she did, why would she ask. We had the "Down syndrome baby", the imperfect baby. Through my sobs I told her we had a girl. I was now forever denied the joy that I had wanted. We did not find out if she was a boy or a girl so that we could have that joy of saying "it's a girl". There was no joy.

Up in the room it was all so surreal. The room seemed so small. My husband was laying in a chair. We were just in shock. He said "I though this was the one for us". He left the room to get some fresh air and I made the call to my parents. It was about 2:00 am. My mom answered so excited and I tried to sound happy and upbeat when I said it's a girl. Having mother's intuition she said what's wrong. I told her they think she has Down syndrome. In disbelief she said what, so I repeated it and just fell apart. That would be the first of many times I would have to say she has Down syndrome and I thought at the time that I would cry every time I said it for the rest of my life.

The nurse came in and told me to get some rest. It was such a stock line to use, like I was going to get some sleep. My head was spinning, my eyes were burning and my nose was raw from the cheap hospital kleenex. I laid there wondering what people would think if I put her up for adoption. What would happen if I just walked out of the hospital without her. I hate that I had those thoughts now but it was an irrational time. For me, those were not an option but I sure did think it. I was not thinking clearly. It was fear, sadness and confusion taking over my head.

At 11:00 am we went to the nursery. They were doing an echo on her so we had to wait. I kept watching the techs face looking for any sign of if her heart was ok. He gave me no expression. My brother in law came in then. He is a perfusionist at the hospital where C was born. He waited until the tech was done and went in to look at the echo with the neonatologist. They came out and the dr. said the heart was clear. I looked to my brother in law not believing the dr. but yes, her heart was fine. I was so relieved. I was then able to go in and hold her. I went in with a nurse but didn't want anyone else in with me. She carefully picked her up from all of the wires and put her in my arms. I was waiting for that moment in the movies where our eyes meet and I am forever in love. It didn't come... it was like I was holding just any baby, not my baby. C did so well in the NICU. She was able to come home with us on the fourth day.

At home there were visitors and many phone calls. I had a phone tree set up and we told our contacts to please tell everyone about the Down syndrome. We didn't have it in us to tell everyone. We settled in. C was feeding well, sleeping well and was a very good baby but I was still so sad. People would come over to visit and I would put on a strong face. When the would leave, I would just cry and cry. I would cry through my whole shower, I would jut go in the bathroom, close and lock the door and cry. I thought maybe I had depression but I knew I didn't. I just had to grieve.

Yes, I had a living and healthy baby but she was not the baby we were expecting. She was not perfect. I was grieving for that perfect baby. I was sad for her future, I was sad for my husband and I, I was sad that we were the ones that got the handicapped baby, I was sad that I didn't know if my marriage would make it over this latest hurdle. I found it easier to sleep on the cough because laying in bed was hard on my c-section incision. I would lay there with my hand touching my daughter and I would just cry. My husband and I never talked. He would just hold her and say "poor C". It became something that made me so mad. Everything made me mad. I was very angry and I can say that I hated God and blamed Him for giving us so much heartache. I compared it to a tennis game. That God was serving up the ball and we were hitting it back each time. We'd hit it back and he would serve it harder and harder wanting us to fail. I was mad at the drs. for not finding out she had Down syndrome. I was mad at each person that told me "we" would get through this. I hated hearing how happy "Down syndrome children" are. I hated having people make it seem like such a small thing. I hated that people made me feel bad for feeling the way I was.

I would wake up every Friday at 12:00 am or so and think about how happy and excited I was only 3 weeks ago, 4 weeks ago... then I would watch the clock tick by and around 1:00am I would think about how my life had change so much in that 10 second moment. Time went on and finally the day came, after about 2 months, where I didn't cry. I remember even thinking, I didn't cry that today. I was getting through grieving. Like any grieving process, there are stages. I went through denial and slowly came acceptance. I was going to request a re-test. I was sure they were wrong. The reality hit me that they weren't wrong, she did indeed have Down syndrome. Each day was better than the last. I would cry a little less and be a bit happier to have my daughter.

I will say that I still have sad times. They are when I try and look too far into the future. I have come very far in learning to take each day one at a time. It's easy to say but very hard to do. I am learning and she is teaching me.

Today, almost one year after C's birth, I am in a much better place. C is doing so well and progressing well. Now I can say she has Down syndrome and be proud that I consider her an ambasador. A little perfect being to show how wonderful people with Down syndrome are.

I have learned to embrace her accomplishments and not let anyone tell me what age level she is compared to. I know we can't compare C to a child without Down syndrome. She will always appear to be failing on that scale. I just help her to do as much as she can and compare her to nobody. She is my daughter and she is perfect. There is no comparison.

Edited after the second year
C is such a fireball and has such an great personality. The sad times are VERY few and far between. Maybe once every few months if even that. She has very clear likes and dislikes, she is happy then having a full blown tantrum cause she didn't get her way, she is very much the 2 year old. She started walking right before her 2nd birthday and now she doesn't even want you to hold her hand. Her attitude is that she can do it all by herself and you know what, usually she can! Life is AMAZING!

Saturday, April 21, 2007

So... how weird are you?

Stole this from one of the blogs I like to check out... careful, you take the quiz and you will get hooked on the many, many quizes they have. Of course, that could be me because, apparently I am pretty darn weird. How weird are you?

You Are 60% Weird

You're so weird, you think you're *totally* normal. Right?
But you wig out even the biggest of circus freaks!

Tuesday, April 17, 2007

Whistle While you Work

We have been working on teaching C to use a whistle. It's a great step for speech and muscle tone in her mouth. Check out her hard work!

(btw... Grandma and Grandpa were over to see her show off her new skill)

Photo Sharing - Upload Video - Video Sharing - Share Photos

Just some new pictures...

Monday, April 16, 2007

My Rock Star

Lately I have just had so much fun watching C change. Last year, she was not walking until the end of the summer. It is so fun now. She hears the back door open and off she goes. She always wants to go and play outside. Today after we got home it was nice and sunny and warm enough to head outside. Well, her new playhouse house is a hit. Just when I think she is all girl, she shows otherwise. Rocks in the driveway are just fascinating. She picks them up and looks at them like they are little gems. Just seeing her little hands working to pick them up and carefully place them in just the right spot is amazing to me. I just am always in awe of my little girl, even with something as simple as a pile of rocks.

One rock at a time... she has her work cut out for her in our driveway. 800+ feet of rocks to play with but she has plenty of fun time to play in the rocks as often as she would like with mom looking on so happy to watch her little rock star.

Sunday, April 15, 2007

I have been sucked into the black hole!

I refuse to get into scrapbooking. No slam against anyone, I am just the simple album type. Well, my moms club hosts a scrapbooking night once a month. They don't have a lot of events I can attend because of work, but this one I can. A friend has been trying to get me to go. I decided to go with the compromise that I would make some greeting cards? Well, 5 hours and $80 later, I have some cards and the bug to make more. I have already been on e-bay looking for Perfect Pearls, I bought markers, stamps, Zots, ribbon!!! OMG!!! I am addicted. I have always been a fanatic about paper and stationary so I knew this was really asking for trouble and asking for my credit card!

With you as my witness, I vow this here and now.
I, Peggy, vow that I will not, ever, never in my life, no matter what bribe is offered, no matter where it is offered (even free in Hawaii), I will NOT ever go to a scrapbooking weekend.
Please, as my friends/supporters, help me on this one!

Not a great picture, but above are my first attempts in card making! Of course, I also have to share one of C since we had a fun photo day today.