Down Syndrome Awareness Month

Many of you may not know this but October is Down Syndrome Awareness Month!

I would love to share what Down syndrome is really all about-- from my perspective and experiences!

So, come on... ask me some questions, I would love to answer them! Feel free to email me with your questions or leave them in the comment section below.

Today I want to express the importance of choosing your words wisely. You may not realize that by rearranging your current ways of thinking as well as the words that you speak you can actually stop a great deal of discomfort and even pain!

My daughter and other individuals who have Down syndrome HAVE IT. They are not Down syndrome and should never be referred to as being Down syndrome or being Down's.

Vada is a child who happens to have Down syndrome she is not a "Down's child".

I want more than anything for Vada to be looked at as a person, not as one of her many diagnosis.

While I know that the majority of the people who read my posts are kind and caring people, who mean no harm have the power to silently break my heart over and over again and if the situation were reversed and if I were doing something that I knew hurt others who I cared for  I would want to know and I would want to change what I was doing. That is why this is my first post for the first day of Down syndrome awareness month. I think it's a very important lesson that we should all learn in regards to anyone with or with out Down syndrome. People are people first. 

Prayer Buttons

I don't know if anyone has noticed but I removed all of the prayer buttons that were originally on my right sidebar.

Over these last several months our children have gone trough quite a lot but they have overcome even more! I removed the prayer buttons in hopes to get new ones-- pictures that show our children now. If you have a new or updated prayer button or link photo to your blog, I would love to share it on mine-- if you'd like me to.  Feel free to send me the links through email or even through a comment below.

I will be updating my blog soon as well as replacing Vada's button that I also took down. 

Personal Donations

For those of you curious as to what we have done with your personal donations here you go.....

At this moment we have raised $1600.00 in personal donations! We have purchased $1500.00 in raffle tickets and tomorrow at the walk we will use the remaining amount to purchase even more! Each ticket goes towards a chance to get Vada on one of the front window's at GiGi's Playhouse of the Quad Cities! They will draw the name of one lucky boy and one lucky girl tomorrow at GiGi's grand opening and you can bet that I will let you know immediately IF our Little Miss does get her name drawn. I know that there are more important things to be praying for but I have included her winning this drawing in mine-- at the very least, cross your fingers!

Girls in Pillowcases

My friends mom, who is from India wanted to make her granddaughter Hope and Vada dresses. They came in the mail well over a month ago and Kathee (my friend) and I eagerly dressed our girls in them. I however forgot to bring my camera at the time, so I took the first couple of posted pictures with my cell phone.

It's hard getting decent pictures of very mobile babies who happen to be interested in everything but me with the camera!

Aug. 20, 2011

Aug. 20, 2011

Aug. 20, 2011

Since the first time around was not the most successful "photo shoot" we decided to try again. In the first picture-- in case you hadn't noticed, Vada is sitting on Hope. What are friends for, if you cant sit on them?

Issac and Kathee were both home and as we were trying to get both of the girls attention, Issac started making really loud noises. Obviously Hope was cool with her Papa's noises but it scared the poo out of Vada and she quickly tried to escape the scene.

Hope tried to explain that her Daddy was just a  "nut" (her words, not mine).

She said that He couldn't help his crazy ways but that her Daddy was an okay fellow.

Vada seemed to understand and trusted that her friend knew what she was talking about.

Out of stress Vada did pick up a new habit. The "pacifier". Issac was thrilled because he felt as if  he had converted Vada from being an Illini fan into being a Husker fan. I don't even know how she knew where to put that thing she has never really took one! Silly girl!

Family Camping

I have never felt like I belong anywhere (other than my with my family) as much as I do when I am at our church. That's why I was thrilled when I found out that they were doing a family camping trip on the same night as my thirty first birthday. With Justin at work I thought it was the perfect place to be to celebrate being blessed with another year. I decided to take V to Justin's parents house because I knew that the temperature was suppose to drop into the mid thirty's since she was already not feeling well I didn't want to make her feel worse by exposing her to really cold weather. I did miss Vada and Justin but at the same time I was also grateful for the "big girl" time that I had with Jasmine and Kiliegh. I can not remember the last time that the three of us did something together, especially something like this...

The Smallest Bumble Bee

The Upside of Down syndrome Quad City Family group and GiGi's of the QC has some upcoming fundraisers in the works and The Mad Potter (a paint your own pottery studio) offered to donate a couple of their platters to help raise money through silent auctions. Each one of us was invited to bring our children (young and old) into Potter's studio to have their finger prints done-- the studios idea for the platters has to do with turning the finger prints into lady bugs, bumble bee's and flowers. Since I had Jasmine and Kiliegh with me I let them decide what V's prints should be turned into and they chose yellow bumble bees. 

Vada'd sweet thumb was sponged up with paint and squished onto the two plates. When the platters are finished her name should be by her print as well. However if that idea ends up being vetoed, it'll still be easy to find-- just look for the smallest bumble bee print on the plate and that'll be hers!

I love all of these different things that Vada gets to be a part of. It's very exciting for our family to be able to join in as well. Justin and I are proud of our children and we feel blessed that Vada will have many wonderful opportunities through our family group and of course through GiGi's Playhouse to be an influential part of our community!

Positive Experiences

I think of "Down syndrome" on a daily basis. I read about it through emails, blog posts and on Facebook but it is on a rare occasion that I look into the eyes of my own daughter who happens to have Down syndrome, and see it.

More than anything I want Vada to be accepted by others. I want her to be included, valued and loved throughout her life and I want others who have Down syndrome as well as any other intellectual differences to have the same. I often write about Down syndrome or post interesting articles for others to read and hopefully to learn from but I don't do it for the reasons that some may think. Sometimes I feel like because I am so comfortable with our life and the fact that God has blessed us with a child who has Down syndrome that I don't need to share these things because ultimately, Vada already has all of the things that I want for her here, under our roof and in our family. Then I realize that while she may spend the rest of her days living at home, she wont always be under our roof and because of that I have a duty to try to reach others who are unaware, like I once was.

All life, is beautiful. Every child that is created and brought to us has value and meaning. God gives us children for a purpose, He has a plan for each and everyone. Never in a million years would I have guessed that I would have a child with any kind of "disability" and while that is how Vada is labeled medically, I don't see her any differently than I do Jasmine or Kiliegh, my older daughters. To me, Vada is just one of my girls.

Today I posted this article on Facebook; Parents,Siblings and People With Down Syndrome Report Positive Experiences, it's a interesting report and it made me realize once again how Vada's Down syndrome diagnosis has only meant wonderful things for our family. I realize that for her, she will have a more difficult journey ahead of her than her older sisters may have and in many ways she already has. We know that she will have to work harder to achieve certain goals and it may take her longer than the "average" person but that's all okay we will be walking beside her when she needs us and following when she doesn't. I didnt take this survey but I am part of the 99% who loves my child who has Down syndrome. I am part of the 79% who's outlook on life is better because I have her in it. I have no regrets, I have only love and hope for Vada as well as for Jasmine and Kiliegh. I share articles on Down syndrome because I also have a hope that it may help create a better and more accepting future for my children and isn't that what all parents want?

Thank You Lord, I See...

Today, Vada and I went to Peoria. She had a check-up with her Cardiologist, Dr. Bramlett. It was the quickest appointment that we have ever had in Peoria. All good news. Nothing new and we wont go back for another six months!!! Dr. Bramlett still heard the murmur (which we were told was still there following the surgery) but he said that it is really "soft" and not anything for concern. He said as far as Vada's "case" goes, "she is best case scenario".  She doesn't need to have Synagis (RSV) injections this fall and he doesnt foresee any complications in the future. After this next appointment (the one in six months), if all is well, then we may go as far out as a year before having to see him again. We like Dr. Bramlett, he's a good doctor and seems to be a nice man but not needing to see him is a good thing my friends! It signifies more growth and more progress for Little Miss Vaders!

Vada was weighed and measured today and while she hasn't gained any weight, she has grown in length! She weighs seventeen pounds-nine ounces and is twenty-nine inches long! For a girl who was stuck at twenty-five inches for over six months, this too is progress. Actually, I stand corrected, it's growth!

On the way home my heart was overflowing with warmth and happiness. It finally feels as if we have our girl and our life. Things feel safe and "Normal".

I find myself staring at Vada all of the time. Sometimes its with amazement, other times its with wonder and then other times it's been with fear. Today, I looked at her and finally, finally it didn't feel like I was going to loose her. It felt like I could breath again and like that damn elephant that found a resting spot on me had picked its huge ass up and off of my chest. It's nice to take deep breaths again and to not feel some sort of pain attached to them.

My faith in God is here, I haven't lost it and while it has done some teetering throughout these many months of stress and ciaos it has always remained strong.

... and that family that I prayed for as a child... well, tonight as we were getting ready to have dinner God showed me again, how very, very blessed I am. It was like He was screaming at me... "Look at the husband I gave you, the father that you asked for. Look at your daughters, your children, the siblings that you wanted. I have answered your prayers. I was listening... Look."

Thank you Lord, I see. Thank you for all that you have given to me. Thank you for the strength that you have given to me and to my family and thank you for answering all of my prayers.

Wordless Wednesday: Blowing Raspberries

Singing With Daddy

Justin is currently working a shutdown shift schedule. Typically he works either twelve hour night shifts or twelve hour day shifts. On this shutdown he is working a total of thirty-three twelve hour night shifts--in a row!! As of 5:50 PM this evening he had twenty-nine nights, thirteen hours, eleven minutes an fifty-two seconds left. Who knows what it is now. Either way, there is still twenty-nine nights left!

Only two things good comes from these mandatory shutdowns. 1.) A good paycheck. 2.) He'll be able to attend the QCA Walking On the Upside of Down Syndrome awareness walk!!! He was suppose to be working a day shift on the day of the walk but now he's not. Needless to say, I am stoked! God is good my friends! God is good.

Justin barely has anytime at home unless he is catching up on his sleep, but he always makes time for us before he leaves.

Yesterday he sat down to play his gutar, something thats very common for him to do. Vada loves it, no matter where she is in the house or what she is doing, when he starts to play she goes to him.

She has begun to sing along with her Daddy. It's their thang. :)

Justin started to car pool with another guy who he works with. When I told him that his ride was here and then told Vada "all done" this was the face that I got-- Call it coincidence, if you want... I think she knew exactly what she was doing and she was showing us that she was not thrilled about loosing her musical partner.

She cracks me up! I love her expressions and her personality. She is fantastic.

Mini Cones and Baby Drool

Jasmine asks for ice cream practically everyday once she is home from school. The girls always have a small snack before going off to do their homework and ice cream is Jasmine's favorite. Justin's mom bought these mini cones from Blue Bunny and after seeing them I thought that they were perfect for Jasmine because they were already proportioned and ready to go--practically no mess left behind and no cheating with a little extra scoop.

Yesterday was so beautiful out so instead of sitting in the house we went into the yard and had snack and played for awhile. While Jasmine was having her cone she asked if she could give Vada some. I said sure thinking from past experiences that Vada wouldn't eat any. Boy was I wrong! She couldn't get enough and her sweet sister was patient and sharing the whole time. I was really surprised that she didn't complain once, not even when Vada took off the whole top of the cone followed by a line of drool that stuck to the cone. Jasmine giggled, shrugged her shoulders and took her own bite! What a kid!

While Jasmine is a fantastic sharer we've decided that we should start teaching Vada that she too needs to share, especially when what she has isnt her to begin with. When Jasmine took a bite, any bite, Vada would get frusterated and sometimes she even raised her voice! It's true... spoiled baby. Spoiled but cute!

She acts like that because she knows that she has her sisters wrapped around her teeny tiny little fingers. She knows that she is loved.