Inclusion can be scary

We fight for inclusion- we fight for our kids with different abilities to be given equal rights to education-to programs, in groups. I fight for people to see E-V before Down syndrome- and then you get the email " you have been invited to Reese's 8th birthday party" excitement- happiness- "inclusion" and then fear and panic sets in. I pray everyday that the kids in E-V's typical 2nd grade class see her for who she is, I also pray that E-V befriends the kids in her varied instruction program class or as they are called the "VIP's" ...for as much as I want the typical kids to treat E-V the same, in my heart I know its just as important that we as E-V's family & friends also befriend the kids that are in her VIP2 class and really all children- no matter what their abilities are. To see the world through a child's eyes and for me through E-V's eyes- she doesn't see difference or color or race or any type of different abilities - she just see's people who make her smile- laugh and help her through her days. I want so bad for E-V to be valued and excepted- every time we get that invite- I feel extreme anxiety- glad she was invited but fear of what's going to happen once we get there. The fear of the unknown- while other parents drop their kids off- I stay and try not to be that helicopter mom hovering over her every move but I know I have to be there to help reinforce her actions & behavior. When we walked into 5 Wits- we were running late- I could see a group of girls standing at the top of the stairs- the minute we walked in they all started yelling "E-V is here ...E-V is here..." my heart sank with happiness- as they came down to help her up the stairs..my mama heart melted into a puddle of love. As they conga'd around and did london bridge with her (her favorite game/song) until it was time to go down for the adventure. When it was time to go down - two of her friends took her by the hands and helped her down the stairs. During the adventure there was not one time that one of the girls- didn't come over and try to get E-V engaged, even Reese's brother came over to try to coax her to interact. She was just as happy hanging in the background watching the girls figure out the puzzles, light up the lights, come up with the light scheme to open the doors- it was quite the adventure for sure, but I never felt out of place. Once the adventure was over we went back up to the party room and had pizza, soda, brownies & ice cream- sang happy birthday. The girls love to ask E-V questions to hear her say "yah" over and over. Towards the end Reese said "who thinks E-V is the cutest" they all raised both of their hands including E-V. Reese's mom and other moms that came in to pick up their kids said "E-V is quite the celebrity"... This is the 2nd birthday party E-V has been invited to and just like the first- I left feeling like my heart was full - E-V's friends from school truly love her. Even Reese's dad said they are learning sign language from E-V. This mama will sleep peacefully tonight and will say a prayer - and thank God for putting people in our lives that help me see all of the positive things in this world.

Building our community where ever we go

Yesterday while driving back from the MDSC Buddy Walk in Wakefield MA- I remembered my blog...and how long its been since I have posted ...what I was feeling while driving, wishing I would have recorded what I was thinking at that very moment. We moved to MA almost 1 year ago, we left a very close knit DS community in Cincinnati (one of the best in the country). We have been fortunate enough to move across the country- visit different states- become part of each and every DS community- no matter what state we were in. We started in RI where E-V was born, the funny thing is when E-V was born I had 0 connections in Rhode Island in the community. I was scared, it was all new and I didn't reach out as much as I could have or should have. After we moved I met a few local Rhode Islanders who have become lifelong friends as well, Steph- Em and many others. When we moved to Orange County CA, the DSAOC simply blew me away, amazing community, families driving for over an hour to make the monthly family support meetings. We became part of the DSAOC family, we joined a group of parents who were each assigned to two local hospitals . We would visit the social workers, make sure they had current DS info, intake fax forms etc. After two years we then moved to Texas, we were about 40 miles south of Dallas. The DS Guild of Dallas was very welcoming and felt like part of our family. I became part of the parent outreach program - for new parents who had questions or just wanted to talk with another family they would give them our contact information. After 1 year I was offered a job in Kentucky, we had never been to Kentucky. I reached out to a few local groups, DSAGC, I became connected to the "Eastside Moms Group" Tika Tollett & Missy Skavlem, as well as Martha from Early Matters and many other families. I still look back and am amazed at how much this group not only welcomed new comers but made me feel like I had known them forever. Tika went above and beyond trying to help us find a rental house, everyone in the group offered suggestions- looked in their neighborhoods. Martha from Early Matters called me, texted me- she welcomed us with open arms and so much support. We were very active with all of the wonderful opportunities that the DSAGC offered its local families- from Music Therapy, Moms night out, monthly play groups that gave our kids the chance to try so many different things.I have to say I really struggled leaving this community. They are friends who are now lifetime friends. Tika and I with our little troop went on so many memorable adventures together. They are women & families that I will stay connected to forever , visit when we can and we celebrate our kids achievements and cry together with their struggles. We share our IEP and inclusion idea's. This group of families holds a very special place in my heart. A M A Z I N G is one of the words I think of when I think of Cincinnati. Now its been almost 1 year and we are now in Walpole MA. I finally got to meet the beautiful miss Autumn and the McDonough family, Megan and I have been online friends for years. Its funny when you finally meet in person, I wasn't nervous it felt like I was driving to an old friends house. I have became now accustomed to where ever we go- we always have our DS family and MA has not been any different. Right after we moved here I got to meet a fellow Reece's Rainbow cheerleader & supporter Kathleen Dye. Meeting Kathy in person - I felt like we have known each other for our whole lives - another long lost sister? lol..Ava & E-V have regular play dates. Kathy has gone above and beyond trying to help us with every connection we have needed, she helped connect us to an awesome Advocate & friend: Laurel Collins(Laurel is an amazing mama, she even planned for E-V a secret birthday party in June). Kathy helped us get connected to Boston Ballet and she suggested we attend the Wakefield Buddy Walk/ MDSC. I drove to the Buddy Walk a little apprehensive, why? I hadn't planned on going (Im a planner) we hadn't registered, nor did we know anyone who was going. There is one thing about the DS community where ever you are - you are always welcomed. I felt the same way yesterday- we joined in the line of walkers- walked through the welcome line of cheerleaders/supporters with E-V high five-ing every one and her smile couldn't have been any bigger. I was very thankful. This is a safe place for us, a place where the only thing you see in everyones eyes is love for your child. I can't explain what the feeling is not having to worry about things that happen outside of our community- a place where everyone just smiles and says hi, asks E-V what her name is and how old she is, where does she go to school- you know the "typical" things parents are asked when they are out in a big group of peers & their families. When I attend these events, my soul gets refilled- my heart is brimming with love and admiration for every family that I saw yesterday. I am thankful for the people who reached out to us by walking up and introducing themselves to this mama and her little beauty. I wish you could feel what I felt in my heart yesterday- for a few short hours the only thing that existed was having fun, dancing, listening to Ayla sing, enjoying all of the kids playing, seeing some local dance parents, and watching E-V feel like a princess. For a few hours nothing else mattered..

I have been so bad at updating our blog : )

We are still here :) adjusting to Texas- trying to get involved with as many things that will help E-V as possible.
E-V will be featured in the "The New Faces of Fashion Exhibit and Fashion Show" http://www.tonyadaileyblog.com/ that is so exciting for us!!!

I will add more as we get closer to the Fashion exhibit :)

Make Christmas Count... Fundraiser!!

http://liferearranged.com/2011/11/make-christmas-count-for-xander/

Please help me help Xander- he has the sweetest face:

I know I ask for a lot ..but you can also see how many of these babies have found their forever families..how many who have been saved...and you can help..with $5-- by sharing...by praying...by educating as many people as you know about the orphans who are still waiting....

Go to the blog above-- tweet about him...blog about him...share his beautiful face on facebook & donate any amount that you can :)

My Christmas Wish....

I am Abigail9HA Christmas warrior....
If I could win the lottery and fund as many adoptions for these beautiful children that are waiting...waiting...and waiting...I truly would..
But snap back into reality DANI as those chances are few and far between...but until we can figure out a way ...we must  keep showing as many people out there all of these beautiful babies waiting..we need to keep sharing their stories..their pictures...scrambling together and donating every extra penny we can ...& praying /hoping someday these children waiting will know what it's like to have a family that loves them, takes care of them and shares them with the rest of us who are not in the position to adopt..I know I can do something and that's to continue to raise awareness...to continue to educate people I know about the wonders of Reeces Rainbow :  Reece's Rainbow
There are so many wonderful Christmas Warriors out there and I am very proud to know a few : ):Funding Christmas Angels 2011 who are new to this scene but have picked up very well...these are a couple- my niece Denaze & her boyfriend Stephen who have opened their hearts to the world of Down syndrome..although I can't imagine why..but I think it has to do with a certain special little gal ..

and how she has the ability to melt every heart she meets...
For E-V we stand together ..
For E-V we think of many ideas to fundraise
For E-V we open our hearts to other children with different abilities
For E-V we make a stance to change the way our children are viewed " we are more alike then different"
For E-V we stay up endless nights trying to brainstorm a way to help as many orphans as we can..
For E-V is why were are here standing together on this mission to help children who someday will have a loving family..

Please keep in mind if you know of anyone that can help...that can donate..please send them our way..

Don't forget to order your blanket--part of the proceeds get donated directly to:  Ollie, Daniel3G & Abigail9HA
http://fundsforangels.blogspot.com/2011/12/blankets-for-comfortfunds-for-angels.html?spref=fb

Abigail 9HA

Guess who has a Christmas Warrior?? Abigail 9HA

E-V's 3rd Birthday hooray!!!

3 years ago today--we were driving to Women & Infants Hospital in Providence RI, scared & nervous..praying that our baby girl would come out screaming and kicking...of course we were late checking in...my mom was there, my sister Shelly flew in from Texas, my sister Candy & my brother in law Jim was there, my best friends Tracy & Ginger were there of course my awesome Savana was there, me & Jesse (daddy) ..my sister Roann was on the phone talking us through the wait..my dad was anxiously waiting the news along with my sister Robin...i went through the initial lab tests, of course they checked to make sure she was still breach..if she had suddenly turned they were sending me home..i prayed she stayed just like she was... we all said a prayer together..holding hands..which made me sob but also gave me strength & renewed my faith..

We will back track to my 20th week of pregnancy when my doctor called to tell me what she saw in my 20 week ultrasound..she saw our baby girl with a condition called " hydrops"..and if you ask anyone...that condition is pretty much fatal..I think I cried for two weeks after that diagnosis...I prayed every chance I got-- I had genetics counselors..dr's..all saying you can terminate..we can do an amnio and see exactly what chromesome disorder she has and we can't find why she has hydrops..i guess there are hundreds of reasons why and all the ones that had ways to be fixed we tested negative for..but wait I saw her little body on the screen (so she looked like snoopy with her little extended belly) but she was my snoopy..Please God don't take her from me..we had people praying for her from Ireland to India from almost every state in the US..all my sisters told our story..my mom told our story and all our friends..and I thank God for all those people who prayed with us..no matter what religion ..what faith..denomination..they prayed for our little girl..which meant the world to me...

We will back track even further to numerous conversations that Jesse & I had that we werent going to have any children together and that was ok..we were ok with that...until E-V...

Savana went with me to my initial ultrasound to see how far along i was..the technician first thought it was my 16 year old daughter at the time having the baby..then he spent the whole appointment trying to make up for what he said and explaining how his mother had him at an "older age" (gotta love that term) ...once i knew..i never looked back..

I didn't even tell my family ..my mom...my sisters that I was going to have a baby until January..I think I was in shock...we were called to an emergency visit to California to say goodbye to my dad..his doc had only given him a few days to live..um ..great so emergency tickets we got...i finally told my sister Roann...her family, my sister Shelly and as we all drove from the airport we called my mom ...and she got the "guess who's making you a grandma again" ...yeah you guessed it..my name came "never"..lol..boy was she surprised...my dad was happy but sad he wouldnt be around ( or so his dr was telling him)

I went twice a month for level two ultrasounds...refused an amnio..and just asked if she was in any kind of pain..as that would be something i couldnt handle..

we had good readings and not so good ones of course...when I was 8 months pregnant..i thought phew we made it this far..we are going to be ok..then one of the ob's decided to tell me I was at a high risk for a still born baby..in case I hadnt realized that..

we did non stress tests and fluid checks bi weekly for the last month...and finally my c section was scheduled because baby E-V decided she would turn herself upside down (breach) and never turn the opposite way : )..I wouldnt let anyone buy me anything because I never heard the words.."she will be ok" I can honestly say that until they took me into the operating room at 11:00 am Friday June 6thand at 11:15 am they said " we have her" until I heard E-V cry ..half my heart believed she wasnt going to make it...she bellowed..i saw them carry her over..Jesse cut the cord and she looked beautiful..they said she looks great..Jesse and I both sobbed with tears of joy...and off she went to the NICU so they could check her out...

E-V was born with three small holes in her heart, she spent a week in the NICU- they needed to regulate her oxygen with a canular, she had some fluid in her lungs from the c section and her glucose was low...

She weighed in at 9lbs and 3 oz...19 inches long...with lots of hair..the nurses loved her :)

We loved her...

Fast forward to 3 years later..no more holes in her heart (they healed on their own)

shes walking..trying to say things...she never stops amazing me..yesterday she got up on the step stool and climbed into her high chair..she almost has going up & down the stairs mastered (she knows where to hold on)..she can imitate from 5-7 different Barney DVD's and the songs..we watch her..she listens to what song it is and does what the kids do while watching herself in a mirror..the reflection in the stove...E-V always makes sure the refrigerator door, car door any door is shut once she notices its open...we are so happy at all the things she "can" do  : )

Oh and her grandfather/papa actually stuck around past her first birthday..so we took a trip to see him..show him his grandaughter that he never thought he would see..we got to spend a few months with him before he passed away..I thank God every day we moved back to California to have that opportunity..

Happy birthday" our little angel E-V" you are one of the greatest blessing in our lives...you make me believe there are angels walking on this earth....