Monday, November 15, 2010

From the Outside Looking In

I have realized today, that no matter how close you are, how supportive you are, how aware you are. Those around you really just don't understand. Unless they are in your shoes, walking your walk, they are just by standers on the outside of the window looking in. Saying they can dance the dance, sing the song, but the reality is, only you and those in your new world truly understand.

Today I had someone very close to me say something to me that I took very offensive. I know myself, and my tendency to over react, so I shared this "situation" with others on both sides of the spectrum. I had my own mini therapy session with those that are a member of my Down Syndrome family, and those whom are not. It's sad that every MOTHER who has a child with Down Syndrome understood exactly how I felt, and every one who did not, thought I was over reacting.

My Thought Process
When you make that comment, using "retard", "short bus", "special ed"...9 times out of 10 you are using that statement to refer to someone or something in a negative respect. Well the reality is, that the terms were all once used on a daily, clinical, educational, normal basis for someone just like my daughter. And it HURTS!!! So, when I may ask you to not use that phrase or word again, my thought is...Some child may look up to you, whether its your daughter, son, niece, nephew, cousin, etc. And that child may notice that you use that description to make fun of or describe another person. Well, what does that child do...he goes to school and uses that same word or phrase to call his friend, or someone he may see at school who is a little bit different from him, or that child that he could be making fun of could be a child with Autism, a child with another chromosome disorder, a child with Down Syndrome, the daughter of one of my friends...or even my own little Grace.

It's hard to make someone understand, when they are on the outside looking in.

Do you think of Down Syndrome every day?
YES I DO!! Do I want to? NO!!!
You may see Grace once a month, or even once a week. And what you see is this cute little butterball who smiles and coos at everyone that crosses her path.
I see Grace daily, and although I see more of our families features in her, then I see Down Syndrome features, but I would be lying to say I don't also see where she resembles some of my friends kids in my Down Syndrome family. I see the slanting of the eyes (still beautiful) the shape of her head (I say to hold all the smartness) the bend in her chubby pinky (her signature bend for the tea cup hold).
I am also reminded on a normal basis when we have therapy sessions, and I am told how well she is doing, but also realize that we are several months behind. I am also reminded when I take her to the doctor and one of the first things the specialist says, "Oh, she is Downs" (ARGH)
I am even reminded when we are in the store and I have people look at her, and smile...that sympathetic smile, and stop to tell me how adorable she is. Would they have said that if she did not have Down Syndrome? So yes, I think of Down Syndrome every day. Do I want to? NO!! Do I think it will get easier as the years go by... I sure hope so!

She is handling this so well...
Compared to what? What does every Mom do with the obstacles that come their way? They make it through it. It's like a great movie once said "Men are supposed to be made outta steel or something?" when the reality of it is...that is what a MOM is made of!!!
Most days are good, and most days are easy. But every mom with a child with special needs, still has her hard days. I am not going to say its a hard and unbearable life. But there are those moments where you hurt for your child. Not because you want your child to be any different, but like every mother you want the best for your child, and wish your child didn't have to try so hard, or put the extra work or effort to do something so simple, that so many others take for granted. But, I truly feel God hand picked us, and chose each and every one of us individually, because he knew which ones could handle the obstacles and EMOTIONS that were going to come their way, and make the best of it, and love that child no matter what. My Love for Grace, is what gets me through those hard times.

So, in conclusion, I hope my post allowed for all of those who do not have a child with Special Needs, that are on the outside of my world, looking in, can have just a little bit better understanding of why something that may not mean so much to you, can hurt and be so personal for me.

Wednesday, October 13, 2010

Down Syndrome Butterfly Fundraiser

Please join me as I raise money for the Houston Buddy Walk. I am selling a Bedazzled Down Syndrome Butterfly Iron On. You can iron on to any shirt you like. Each iron on is $15, and a portion of the sale will be donated to Grace's Glam Squad. Get your orders in now!!

Tuesday, October 5, 2010

31 for T21 - Day 5 - Sleeping Beauty

Even though she is sick...she is still Sleeping Beauty!

31 for T21 - Day 4 Sick Baby

So, I am a day late. I have been dealing with a sick baby. This is Grace's first time being sick and she is 7 months old. I am grateful we have made it this far without getting the crud, but I could whip her brothers butt for giving it to her. Ok, that wasn't too nice. But Sammy was sick all last week, and it is almost impossible to keep these boys from their sister. They love her just TOO much. So, Sammy passed his germs to Gracie, like I expected. And now she has the runny nose, the bad cough, a sore throat, and feels down right crummy. She is just not herself. She is either sleep, eating, or crying for Mommy to hold her. So Mommy has had to give her baby girl some extra undivided attention these past few days.
We did go to the doctor yesterday, she has a combination of Croup and Allergies.

All this beautiful weather we have had in Pearland really sucks on baby girls allergies!

Well, heres to happy healing, and a speedy recovery.

Sunday, October 3, 2010

31 for T21 - Day 3 - BABS

So, I have a new nickname for Gracie. It's Babs!!
I am not sure why I thought Grace would be different, I am a talker, her brothers are it was inevitable for her to be a talker. Grace has started babbling non stop. In the morning when she wakes up, while she is playing on the floor, in church as everyone is quiet. She is a talker!! What can I say? She got it from her momma!!

I must admit, I enjoyed watching my husbands smile today as she babbles Da-da-da-da-da!

Friday, October 1, 2010

31 for T21 - Day 2 - A Year Ago Today

I can not believe how quickly time pasts. Has it really been a year since I got that phone call? The phone call that gave me the results of my amnio.

For starters, why on earth would a doctor call you at work with that type of news I have no idea. She is lucky that I liked her, and was willing to accept that from her. But yes, on October 2, 2009 I received a phone call at work with the results from my amnio. I went into a conference room and closed the door. Whats funny, is that I already knew what that doctor was about to tell me before she said it. Six weeks prior to this day, the first time "down syndrome" came into our vocabulary, I knew. I could feel something different early on. So I already knew what she was going to say, as the words came out of her mouth. "The results have been confirmed, you are having a girl and she does have trisomy 21."

I left work for the day and called my husband, my mother...crying the entire time. I am surprised they were able to understand a word I was saying. Driving at that time was probably not the best decision, but having a crying fit in the office probably wasn't a good decision either. I left work and drove home, questioning, all the things I thought this child would not do.

Then something took over me...its like a wave of calm came over me. I was still crying, but no longer hysterically crying. I pulled into the parking lot of our local shopping center. And I told myself. The doctor said its a GIRL. We are going to finally have a baby girl. And I switched my focus of the news that was handed to me that day. I stopped thinking (for a quick moment) that this darling baby I was carrying would have Down Syndrome, but instead I focused that I was finally having my BABY GIRL! I walked into the Carter's store, and picked out Grace's first dress. I was still crying, and had mascara streaked across my fast, and I checked out of the store with two dresses for my baby Grace.

Those two dresses hung on the door knob in my bedroom for several weeks after I was told my daughters diagnosis. It was my own type of "retail therapy." Every time the thought of sadness would come along and I would start to think about what I would be missing with my daughter having Down Syndrome, I took a look at the little brown dress with pink flowers hanging on my door knob, and would think...who cares....I am finally getting my BABY GIRL!

31 for T21 - Day 1

So, today has been one of those full blown, PRESSURES OF BEING A MOM DAY!!! Since I can't think of too many pleasant things to say, I am going to share with you, what keeps my spirits high and keeps me going everyday. Everything I do in life, I do for three things....

These three smiles...

Wednesday, September 29, 2010

Order Your Awareness Band

Order yours now, before we sell out. Support Grace's Glam Squad and the Houston Buddy Walk.

Awareness Bracelets

Saturday, August 14, 2010

Living in Denial

Did you ever go through a phase where you felt like you were living in denial?
Well, I think the reality of this phase hit me today.

Today Grace finally, had her baptism. Well as I got her dressed and snapped all these cute pictures of her..common on...face it...she's got that cuteness. Well as we are at the church and I see 3 other kids her age that are being baptized as well...reality sets in...Grace is different from these other kids. Other than Grace being a fat plump compared to these other kids, I notice other difference. She is not holding her body frame up as well. Her eyes are shaped a little different. Her nose is a little flatter than the others. Something about that smile, beautiful, but different. What am I seeing? Am I really seeing Down Syndrome for the first time? Or is it that I am around other kids her age that DO NOT have Down Syndrome and I notice it even more. And as much as I love every inch of this baby girl I look at her and think, does everyone else see... what I see? So just as I thought I had permanently closed the flood gates, I shed some tears tonight for my baby girl. Not because I love her any less, but because I see the difference. And if I see the difference, that means everyone else sees the difference, and unfortunately everyone else won't have this strong love for her that I have.

Despite mommy's moment of sadness on the day, Grace still managed to be the Princess that she is.

My Beautiful Down Syndrome Princess!

Grace, her mommy and daddy, and godparents (Nanny and Parean)

Sunday, August 8, 2010

A Busy Month

I glance at my blog and see its been over a month since I really posted anything...well we have been busy.

Today, Gracie is five months old. I can't believe it, time has really passed, but when you are blissfully happy time just seems to zoom by. Grace still seems to amaze her physical therapist and doctors by doing such a wonderful job. There are times when I look at our neighbors kid who is the same age as her, and I notice that she is a little bit wobblier than he is, and she is not sitting up...a pinch of sadness starts settling in, but then, she smiles that big beautiful smile and I forget about everything she is not doing and brag about all that she is doing.

Gracie was blessed to have a photographer come across my blog and donate her services. She read my blog and saw Grace's pictures and offered to take a few pictures of her to add to her gallery. This was a big reminder to me that there are still good people out there that want to help others. There is no way I would have been able to afford her services on a one income household. But I guess Angels are still watching over us, and have decided to bless us with some of the little luxuries we could have done with out.

Now other than snapping photos, mommy has had a lot of other things on her plate. I have discovered that we are definitely a football family. My oldest son has started playing little league football, and I just love every bit of it. I love it so much I have volunteered to be the team mom, and despite everyone telling me how horrible being the team mom is...I love being a part of my sons team. I am sure as the season starts I will have to add a little Evan bragging into my blog.

Well, as if I wasn't busy enough...I have also started a local community group for our Down Syndrome Association of Houston. Houston is a very big city and living on one of the suburban areas of town it would take almost an hour to get to our local meeting area. But I luckily will not have to do that anymore. I have worked with a few other moms in the area, and the president of our DSAH and we now have our own Pearland Community Group, and I am so proud to say I am the group leader. I have been very busy pulling this all together, but it will be so worth it in the end. It's funny I quit my job, and found what I was meant to be in life. A mom, and involved with the community. I am sooo loving this.

So now that I tell you what all I HAVE been doing, since posting to my blog has not been one of them, I am making this promise to post once a week...who am I making the promise to, myself!

Thank you so much Tonya for taking pictures of my baby.

Sunday, July 4, 2010

It's been one year, today, since I found out I was pregnant with baby number three. So many things started going through my mind. Can we afford another baby? Can I mentally handle another baby? I thought we were done. I didn't want another baby. How would I handle another baby? I was working crazy hours at a very demanding jobs, I just didn't see myself having the time for another baby. All the doubts of if we were going to be able to handle this haunted me on a constant basis.

About a month into my pregnancy I started having this strange feeling. The feeling that I was going to miscarry. I just had this feeling that I would NOT be able to handle three kids, and God doesn't give you what you can't handle, so I just had this feeling that something was going to happen and I was not going to go full term with this baby. Every day I tried to imagine how I was going to be able to handle what was in store for me in 9 months...
Then that's when the news came. I found out that Grace had a little something extra. As a matter of fact, at that point her name was going to be Lily, or Olivia even. But once I found out that I was having a girl, and that she was going to have Down Syndrome, I knew I was meant to have this baby.

A year ago, I would have never thought I would have an unimaginable love in my life. Grace! A little blessing she definitely is.

Friday, July 2, 2010

A Day of Discoveries

I discovered that if I keep swaying my hand back and forth....
it eventually makes it into my mouth!
I discovered that if I pull on the toys, they make a funny noise as they clank together
I discovered if I get bored with the toys, Mommy usually leaves the ceiling fan on.

Oh what fun discoveries we have made today!

Thursday, June 24, 2010

A Tribute to the Sisterhood

I noticed today that I have over 150 friends on my facebook account that are my Sisters of the Extra Chromosome. Whether I met you through BabyCenter, or came across you on Facebook, God has really blessed me with this new found family that I have. I have learned more about your kids, and feel like I know them as any Aunt would know her nieces and nephews.

I am there to cheer on as Sara has her first taste of baby food, or Isla as she sits up like a big girl at the restaurant, or Violette as she conquers the potty, and Joy as she moves to the big crib.

I am there to congratulate Olivia on her 2nd Birthday, Kate on her 3rd or Gabriel and Kai as they become big brothers.

I am there to pray for Shane and Wyatt (who have been so strong), Jonathan (who approaches surgery next week), and Lucy (who has finally made it home)!

I am there to admire the photo shoots of Miss Elizabeth, the captivating smile of Ethan, the "wish I had" hair of Wyatt, and the beauty of Solana.

And this only speaks of a few. I could name them all Grady, Chloe, Micah, Castian, Sebastian, Vincent, Taylor, Lila, Sam, Molly and Claire....the list could go on and on.

I have grown to know these kids and their families. I have also grown to love and care for these little ones and their families, just as I would any niece or nephew. Just as I know so many have grown to love my little Grace. Some may not understand how you can have this bond with women you have never met, but ask any other mom in the Sisterhood of the Extra Chromosome, they feel the connection as well.

If only there was a way every time a family received the diagnosis, instead of someone telling them "I'm Sorry" there was someone there that could tell them, "oh how lucky!! you just gained an amazing family!"

Thursday, June 17, 2010

Here's to my Girly Girl!

Last October when I first found out about Grace's diagnosis my mind started racing about all the things she would not be able to do. I knew very little about Down Syndrome and that time and just expected for Grace not to be able to do the things that "typical" kids would be able to do. I was so excited about having my little girl (after 2 boys) that it was important to me to have that little girl that I could do tea parties with, that we could do ballet, and cheer, and everything else her (and mommy's) little heart desired. I so wanted that "girly girl" and thought that Down Syndrome would take that away for me.

It's amazing how your mind set changes the more you know. I now have Faith, that we will be able to do all of those things that I would do with a "typical" daughter. We can still do dance, we can still cheer (which I have had several people tell me about a little girl on our local cheer team) and we will still have many tea parties. Now, I don't worry about if she will be able to do these things. I just hope I we don't get any "tomboy" genes and Grace wants to do these things.

So here's to my Girly Girl!!!

Monday, June 14, 2010

My New Career

Grace made 3 months old last week, and I have been home for almost 4 months. I must say I am embracing my new career in a way I never thought I would. I use to think I would get bored being at home, amongst children all day...sad to admit, that I even thought I would get tired of my kids. Funny how things work, as I experiencing the exact opposite.

Being home with the kids has allowed me to kick back and enjoy the little moments I use to overlook. I feel like I am living in SLOW - MO now that I no longer suffer from previous stress and busyness of my former employer. For once I am able to take the kids to the park, and not worry about rushing back home to get the house clean. Or nurture a kid that is not feeling well without being called from work on how to do this or that.

My hubby teased me on Sunday night saying that I traded in my high heels for flip flops....oh how I love my comfy flip flops.

The beginning of our summer fun:

And Grace just sleeps through it all!

I often wondered what I was meant to be when I grow.
Who knew, that I was meant to be a WIFE and a MOM!!