31 for 21: Day 19: Thank you.

View More: http://mollyflanaganphotography.pass.us/starkey-family-2013

I sit here grinning ear to ear as emails pop up on my work computer screen with a multitude of compliments on how gorgeous our grinning four-year old is from people around the state that I have never met before.

I wasn’t sure I could do it. I wasn’t sure I could or should step out of my comfort zone and ask the state Commissioner for Vocational Rehabilitation to sponsor a statewide fundraiser for the local Buddy Walk. With all of my experience advocating for people with disabilities, my vulnerability rises to the top when it comes to putting myself out there still. It’s one thing to do my job. It’s one thing to step in and facilitate a situation that I see my children needing help in. It’s one thing to donate my own time, money and energy. It’s something else entirely to put yourself in the position of asking others to help you.

Three years ago a co-worker who had just finished coordinating her own Jeans Day Fundraiser at work stopped by my office to ask if I had considered coordinating one related to Down syndrome. She noted that our commissioner and our senior staff were fond of these fundraisers as it was both a great way to boost morale, to come together as an agency and to contribute to our community around us. Everyone enjoys wearing jeans to work and for a mere $5, a person could make a donation to the sponsored charity and together we would as public servants stand with those in need in our community. I smiled and said I would try to put something together. The next year she stopped by again after another successful fundraiser and mentioned it again. Again I smiled and made a note to draft a letter requesting this. As a family we had participated in our local Buddy Walk before. We had made our own donation, just as we had happily donated when friends and family asked us to with other charities. There is a sense of power and benevolence that comes with being the giver- it makes you feel good about yourself and the larger community you are a part of. There is a sense of vulnerability that comes with asking for help. And as the mother to a child with special needs, there isn’t much time for vulnerability in my day or make-up. Last year I managed to put together a blog post and share it on Facebook. I kept it up in the weeks preceding the Buddy Walk and by the time of the walk last October, our friends and family had come together to donate over $600. As a family we were humbled and awed by their love and support. Because as vulnerable as you feel asking, the warm glow that fills you up when you get the note of a new donation outweighs it. Just before last year’s walk I put together my proposal and sent it off to my supervisors who kindly approved it and passed it on to the Commissioner. A few days later I received a phone call from the administrator for the Commissioner exclaiming over the proposal. She told me she was putting it to the top of her list for the coming year and that it was just what the intent behind the program was- to support our family of employees in their communities. I was thrilled.

As the details got worked out and the date grew closer the email announcement of the fundraiser was sent out statewide. Within the first hour I received the first of several emails:

“You don’t know me, but I just have to reply…  Your daughter is beautiful, and I love her happy smile!  I am glad to participate in this one!”

I grinned and sent a quick thank you for her kind words. 30 minutes later came the next one:

“Hi Nicole – I work in Human Resources – I walked in the Buddy Walk here in Columbia a couple of years ago in support of Lily who attends the school my kids go to.   Love to support this organization!!”

This time a tear welled up. As the fundraising day grew closer I received a couple more and quietly grinned at the framed picture of our Quail on my desk. How far this little girl had carried me from being the new staff member fumbling through my back-breaking stack of training manuals  ten years ago to today.

Over the next several weeks the donations arrived and folks stopped by to check in and see how it was going. In total we received $1210 from SCVR. Friends and family also donated an additional $500.

When the donations finally trickled off I put together a thank you email to go back out to the staff. It’s hard to express the deep, heartfelt appreciation that had grown for me over these small acts from individuals that I both knew and didn’t know without it sounding cliché. When the thank you email went out it of course included pictures of our girl- both at the Buddy Walk and my current favorite that to me exudes the light and spirit that makes her up. The email went out at 2:15 pm.

At 2:47 I received:

“Every hair on my body is standing on end as I read your heartfelt comments, Nicole! What a lucky child is darling Abby to have  a mother like YOU!”

At 2:51:

“These are great pictures that really capture her personality.  She is so beautiful.  Thank you for sharing.”

At 2:57:

“She is so obviously devilish.  A real cutie pie. “

At 3:06:

“She’s so pretty! You and Charlie do good work!”

At 3:08:

“Hello.  If those pictures in the Jeans Day email you sent were of your daughter, I just wanted to tell you she is absolutely beautiful.  The picture of her with hands by her face is precious.”

At 3:09:

“Is that your little girl in the pictures? She is like the cutest thing ever! She is so precious!!! ( I have a little girl too, I’m very impartial!) ;)”

At 3:14:

“Abby is beautiful.  I miss your work newsletter—I was able to watch her grow :)”

At 3:22:

 “Absolutely adorable—go Abby!”

The simple act of those words- these people having taken the time to send encouragement, love and kindness to someone they don’t know after having given already of themselves.. .I was floored. It’s not professional to tear up at work. That said, the human kindness in a place of business letting you know that they see you and your family in a time of need- is priceless. Sometimes you have to push past your comfort zone to find an even softer place to land.

I know I did.

I am so very grateful to all those out there that took the time to stop, read about and look at the face of a child, our child, who represents both herself and the larger community.

Each person who sent in $5- together it added up to well over $1000 worth of support that will go to further advocate and encourage awareness on behalf of those with Down syndrome and their families. Not only was money contributed by these efforts but a sense of community grew out of it. As the mother of a spunky four-year old who has Down syndrome I am heartened by all of the generosity, support and kind words of all of you. It’s this awareness, support and inclusion that is changing the world we live in ensuring that individuals like the Quail have every opportunity. The fact that this extends beyond her is a wonderfully synergistic  and reciprical opportunity that benefits both those who gave and those who receive.  It shows our community of people who my work serves on a daily basis the heart of the workers processing their claims as well as putting an actual person to the claims that pass over their desks.

From the bottom of our hearts to the top of yours. Truly, we are humbled. Thank you.

To those that still wish to donate, Abby’s Buddy Page will be staying up year round:


It’s Buddy Walk Time! Click here to learn more & donate on behalf of our dear Quail!

Our family is joining in our local community to walk in support of and advocate for individuals with Down syndrome! We hope that through education, inclusion and advocacy the world that surrounds our dear one will be able to see the beauty and gift of a girl that we see. The Quail is 4 years old now. She continues to blossom as a most excellent big and little sister. She currently attends both private and public school. In her free time she loves to run, play with her sisters and help her family out. Wherever her sisters are- she’s right there in the thick of it! We love her so!

Thank you for supporting her and our family. Last year through your love, support and dollars we raised over $600. The impact of each and every one of those dollars however, is priceless.Those of you that work with me will have an opportunity to donate through SCVR’s infamous $5 Jeans Day Fundraisers statewide. We were honored to have our charity chosen by the SCVR Commissioner for Friday September 13th  and very much appreciate this opportunity to raise awareness and support. The local Buddy Walk in Greenville, SC will be held on the campus of Greenville Technical College on the afternoon of Sunday October 6th. Please feel free to join us for a beautiful day of fun, fellowship and advocacy! To learn more and register click here. We would love to see you and your loved ones there!

The NDSS works hard to raise awareness and create opportunities for the 400,000 plus individuals with Down syndrome living in the US and their families. Together with the NDSS & the Down Syndrome Family Alliance of Greenville, we envision a world in which all people with Down syndrome have the opportunity to enhance their quality of life, realize their dreams and become active, valued members of their communities.

Click to learn more about the Down Syndrome Family Alliance, the Buddy Walk Fundraiser and the National Down Syndrome Society .

If you would like to donate on behalf of our Quail, please click here!

Call to Action: Justice For Ethan Saylor

This story makes me so incredibly sad. My heart is broken for the Saylor family and their loss of a loved son. Who wanted to see a movie and whose death was ruled a homicide at the hands of the off duty police officers who restrained him when he refused to leave or pay for another ticket. No one’s life should end over something like this. An independent investigation is being called for by the collective of grassroots activists in the Down syndrome Community. Doing our part to put the word out there. Please share the link below to help put the word out and insist on an independent inquiry into this heartbreaking situation. Down syndrome does not cause someone’s death and should not be blamed for Ethan’s.


It is Buddy Walk Time!

The Sistred

Our family is joining in our local community to walk in support of and advocate for individuals with Down syndrome! We hope that through, education, inclusion and advocacy the world that surrounds  our dear Quail will be able to see the beauty and gift of a girl that we see.


Thank you for supporting her and our family. Click to learn more about the Buddy Walk Fundraiser and the National Down Syndrome Society.  

If you would like to donate on behalf of our Quail, please click here!

Zuzu & Quailday: When your cyber-world steps out of the computer….

I am a lucky girl to have a cyber-sisterhood of supportive friends who share in the miracle of trying to conceive with me. I’ve known this group since 2005 when Lovey and I first started trying to grow our family in earnest. Early on it wasn’t easy. We had 2 early miscarriages that year. As I searched for answers on the internet I came across a group on a Babycenter message board of women who shared our struggles and amazingly offered up a whole new world of advice, love and support. They helped me to know what questions to ask and of whom. Many of them had met years before and had been through the stages of the process that we were just starting. Some had their miracles already and others were still working their way through the process. Most of all we cheered each other through this difficult time. Since then we have been there with each each other through more losses, emergency surgeries, fertility treatments, lengthy bedrests, genetic testing and diagnoses, failed adoptions, medical and personal worries, and thankfully more miracles. While none of us are strangers to loss, the loss we all have experienced is our own unique and yet combined story.

Many of my cyber sisters are stepping up together this spring to walk for all babies in the March of Dimes “March for Babies”. A team has been formed to raise money for MOD in the name of one of the most recent and tragic losses of our dear cyber-sister whose precious baby girl Danielle was born sleeping last September, just weeks shy of her due date. The outpouring of love and support and help to her during this sad period from a group that met online is simply amazing to me. We should all be so blessed to know hearts as kind as these in our lives.

If you would like to donate to the March of Dimes March for Babies in Danielle’s dear name, join us here.

I’ve only had the good fortune to meet one of this group of 27 women in real life. Yet I don’t know what I would do without their support and love. They are family now- they are my cyber-sisters, their children, my children’s cyber-cousins.People that I hope to know the rest of my life- and one day in real life.

This winter since a number of our children are no longer babies and are well entrenched in childhood. We decided collectively to do a round of Flat Stanley and send paper versions of our little loves around the country visiting each other. I first mentioned it here with a picture of Flat Zuzu & Flat Quail.

Being a bit more homebound these days growing the newest little miracle it was fun to spend some one on one time with each girl crafting. Zuzu loved to pick the patterns for her flat’s clothes and remained true to her fashionista self. I was impressed with her scissor skills as was she as she kept saying, ” I can’t believe a cut a leotard!!!”.

When Zuzu was ready for a nap that day, her sister woke up full of craftiness. She practiced with her new scissors and took on the clothes pattern picking and gluing like an ole pro.

As life often imitates art, there was a slight unfortunate event involving Flat Zuzu’s hair that resembled 3D Quail’s love of hair-pulling a bit too closely.  It required a bit more cutting and gluing before mailing. And there was much debate with Zuzu over all the extras that she wanted to send along: Flat Sugarplum, Flat Chulacat, a Flat Suitcase, Flat Stuffed animals, Flat Momma, Flat Daddy… in the end the Flat Sistred were sent off solo and together on their adventures around the country.

Some of my cyber-sisters have started blogs devoted to them with the intention of making their own paper books for the kids once their Flats have returned home. I love this idea and we decided we would just categorize our Flat adventures for future reference here.

Meet a few of our Flat Cyber-cousins:

Flat Nathan

Flat Roman

Flat Vincent

Flat Zuzu & Flat Quail are currently in Kentucky with 3D Daniel & Katie and enjoying themselves quite thoroughly. Stay tuned for more on their adventures…

Zuzuday: Doctor, Momma, Teacher, Fundraiser

Momma: “What do you want to be when you grow up Zuzu?”

Zuzu: ” A Doctor-Momma-Teacher! No wait- a Momma first- to 10 girls!”

Momma: ” Maybe start with Doctor, otherwise with all my grandbabies, I’m not sure you’ll have time to get the MD degree!”

Zuzu: “Oh Momma- you’re just being silly- of course I will!”

This girl’s got big plans! And we couldn’t be prouder. A couple of weeks ago Zuzu had her first attempt at fundraising. She was tickled. She kept announcing that she was going to raise money for “St. Jude Children’s Research Hospital“. I kid you not, she got the whole phrase out at least 7 times a day. Her school was hosting a safety week with a final Trike-a-thon on that friday. Each child brought home an envelope to raise money. Zuzu told me very excitedly the first day that there were sick kids who needed her help and she was going to learn about safety, ride her tricycle and  raise enough money to win a bear backpack and help the sick kids! When I picked her up that Wednesday from school her excitement continued. Her teacher told me that she and her BFF were over playing with the blocks and I should ask them what they were building. When I got over there I noticed the small doctor action figures along  with a two foot multi-plex of a building. The girls informed me they were playing St. Jude Children’s Research Hospital. I was so proud. While we didn’t raise quite enough money for the backpack, I think she learned a good lesson- one that fortunately already seems to come naturally to her- appreciation for what you have and empathy for those that have it harder then you do. It’s a good lesson- one that applies from the day we’re born on forward.  St. Jude’s is a wonderful organization that offers great hope to families who are struggling. No child should ever have to learn the language they need to there. But at least there is a wonderful resource to help families make it through today and offer a brighter tomorrow. Please consider donating.

I was going to post about our bird…but this dear boy needs your hearts more

I have all the time in the world to go on and on about my sweet Quail. Why? Because she’s here with me, with us, with a whole community of people who know and love her more than anything. She is blessed with a set of family, friends, caregivers and community members that are thrilled to bits over every single little thing she does. From standing up, to signing, to grins & giggles. She is blessed, and she blesses us everyday. She is changing hearts and minds about that stereotype hovering over people with intellectual disabilities. By merely knowing her, they know more. They know she is full of possibility and wonder. They know she is smart, kind, loving and adaptable.

Everyone who knows her, knows that. But not everyone knows her. In some countries the stigma and stereotypes around people with disabilities still form decisions and close minds to the possibility and wonder in children with disabilities.

Fortunately there are families out there who fight for these children. Good people like The Davis Family, who with the support of Reece’s Rainbow, raised thousands of dollars to be able to offer sweet Kirill a chance at a life with a forever family. They flew over the ocean and swam through the sea of redtape that is international adoption. They traveled to meet him two separate times and stood for 5 hours in front of a judge declaring their love and intentions to make a life for Kirill.

They were told no.

They were told Kirill is socially unadaptable because he carries a diagnosis of Down syndrome.

This is unacceptable. This dear boy will be locked in a mental institution for the rest of his life if a family is not allowed to adopt him. The family is there. The money to cover the expenses is there. The love is there. This family’s eyes are opened.

The judges are not.

I’m posting this in hopes of raising awareness. Money helps some situations. Hearts help others. Please spread the word about Kirill and stop by the Davis family blog to show your support in their efforts.

Come read Courtney’s words and see a video of Kirill with the momma who already loves him. Come open your eyes.

Mommaday: Dear new Momma…

The Quail

Dear New Momma,

 When I heard of your worry over the diagnosis your upcoming baby has received; that they may have Down syndrome and that you are scared,  I had a lot of things to say about the history of people with disabilities and the injustices they have endured throughout time. This morning when I woke up thinking about you again and your worries, I realized this was not the time to try to educate you on the world of disability. I say this as a person who has known and loved people with disabilities my entire life, family members, people in school, people in my jobs and fortunately now my sweet girl. The time will come when you are seeking that history on behalf of the child you know and love in order to be a strong advocate for him. But for now- now is not the time for you to gear up for that. You will know when that time comes. You have already advocated for your baby in the best way you can- by choosing to have him. It is a brave choice. You are having a sweet baby- a baby you will be a better person for having and knowing. Stand with us and let us guide you. Get to know us and the real stories of the real children who have Down syndrome that we raise every day of our lives- do not let others you don’t know fill your head with stereotypes that are born out of their sorrow, their guilt or their ignorance. Those of us in this forum, we have made the choice that you are making. Whether we had a pre-natal diagnosis or not- we’ve chosen to mother our children. No one can tell you what your child will be capable of- but I promise you- your child will know you, will love you, will want to please you, will achieve milestones. He will bring you great joy and you will be continually amazed by the tiniest and grandest things he does. You will get more out of your child by ten-fold then what you put in to him. Maybe a year from now, you will want to know the history, the culture, the great people and forces that have brought the world of disability into a strong place in our world- a place where we have the right to expect equal rights for every human being- regardless of ability. We will be here to help you with that when the time comes. The people who will stand with you and your child- they are strong and good and kind and intelligent and ready when you need them.

For now, you have a sweet baby in you who already loves you enough to make his way here. Turn your back on those naysayers. They are going to do nothing but needlessly upset you- and I promise you their information is not born out of fact and reality- it is born out of fear and a need to justify choices they made—it has nothing to do with you and your baby. They do not know what your child will be capable of. Any child presents struggles, challenges and more blessings then you deserve.


EVERY CHILD deserves someone who believes in them, and for your baby- that’s you Momma. It’s your calling- embrace it. Soon you’ll embrace him. The Down syndrome will not be his biggest struggle, other people’s ignorance will be.


another momma

PS: This letter was written for a very specific someone who was struggling with other’s scare-tactics around her decision to continue her pregnancy after having received a diagnosis that her baby has Down syndrome. If you find yourself in that same situation- know that this letter is for you as well. You can also go here and here for more support, love and information. We’re here for you too. 

Today is World Down syndrome Awareness Day. 3/21; as in 3 copies of that 21st Chromosome. Today is a day we celebrate our beloveds and shout about it from rooftops. If you or someone you love has Down syndrome- well; you are just blessed. Blessed like our sweet family.

Mommaday: starfish

 Remember dear Olga? Well guess what? Her forever family has found her! Miss Olga is about to become one of the Abell’s!!! Patti truly paved the path for a miracle to happen. She and her family; through the caring hearts of her readers were able to raise over $12,000 towards Olga’s adoption grant! That was amazing to me, and in such a short amount of time. A true testament to the power of people who care. The Abell’s have committed to bringing Olga home, and this money most definatel helps- it is a good bit of the cost to bring a child home through an international adoption. That being said they need our help. Could you consider possibly donating or posting about Olga to help continue to raise funds and awareness? If you think you could- go to their adoption blog and donate via their Chip-in. Link them on your facebook page, tweet them, blog about them. Help them, help Olga. This little girl is counting on us all!