Down Syndrome Awareness Month | Joyful Mamas | Guest Blogger: Ashley Tillinghast

Meet ASHLEY & WILLOW:
Ashley is Mama to Willow, who has Down syndrome. Ashley, her husband Stephen and Willow live in a small town in Northern California.

Willow is a beautiful 10 month old baby girl-- full of smiles and laughs! She is very empathetic, has a great sense of humor, and loves to experience new things.
Ashley's words:

"Our birth and diagnosis story has definitely had the most impact on me so far in our journey with Down Syndrome. I just finished putting it all to words over on my blog- so instead, I'd like to share something that I've learned this past year that I feel really passionate about: the importance of language. We received Willow's diagnosis when she was 2 weeks old- and honestly, I had never thought about Down Syndrome before. I was so uninformed about the diagnosis, and was so scared about what that meant for my girl. Because I was a fresh mama, (those first few weeks/months are so emotionally and physically intense) I sort of just 'went with the wave' of pediatricians and nurses advice and input on Down Syndrome. And... it wasn't very positive input. As I started to get to know my new baby girl- I realized she wasn't anything like they told me she 'should be'. She was much more than 'Down Syndrome' in every way possible- she was beautiful, she was determined, she was strong, and she was fierce. When you start out at 3 pounds, I think you've got to be a little fierce! Advocating for 'People First Language' has been the area that has meant the most to me so far on our journey: language is so powerful and important! I've heard my daughter referred to as the "Down's Baby" or the "Special Needs Baby", rather than, "A baby who has Down syndrome". She is so much more than her diagnosis- and it's important to recognize people before their diagnosis/abilities, in the way that we speak about all people. "Words are powerful; Old, inaccurate, and inappropriate descriptors perpetuate negative stereotypes and attitudinal barriers. When we describe people by their labels of medical diagnoses, we devalue and disrespect them as individuals." (Taken from https://www.thearc.org) So, I hope to encourage anyone who may read this- to use language carefully. I've linked a website that has some great information on People First Language below if you want to check it out." The Arc People First Language Web Page
How does Willow bring you JOY?

Willow brings me joy each day! It has been so much fun watching her discover how her body moves- she's discovered her fingers and toes- started to bend her knees and use her legs much more, and is even working on sitting up unassisted! I've realized that we have found so much more joy along the journey to get to the milestone- than evaluating which milestone's she's meeting. She also has the most incredible laugh, which brings me unmatched joy each and every day!

Thank you so much for sharing, Ashley! To follow Ashley & Willow visit her BLOG or INSTA.

Down Syndrome Awareness Month | Joyful Mamas | Guest Blogger: Sarah Teed

"For you created my inmost being; you knit me together in my mother’s womb. I praise you because I am fearfully and wonderfully made; your works are wonderful, I know that full well. My frame was not hidden from you when I was made in the secret place. When I was woven together in the depths of the earth, your eyes saw my unformed body. All the days ordained for me were written in your book before one of them came to be."  Psalm 139:13-16
"I was 37 when I found out I was pregnant with my third child, William.  Because I was older, I knew that I had an increased risk of having a child with Down Syndrome and prayed throughout my pregnancy for the health and safety of my baby.  When it came time to do the normal pre-natal testing for spina bifida and Down Syndrome at 16 weeks, I declined because I knew that I would not choose to abort the pregnancy if the results came back positive.  Thus, when Will was born at 37 weeks of pregnancy, I had no idea that he had Down Syndrome. It took our pediatrician about 4-5 weeks to make a firm diagnosis. When we received the news that genetic testing had determined that Will did have Down Syndrome, we went through a period of grief and mourning the death of the dreams and expectations that we had for him.  However, we had much to be thankful for in the midst of this difficult news – Will was very healthy and did not have the heart problems usually associated with Down Syndrome. We had lots of family and friends that loved, encouraged, supported, and prayed for us during that time of adjustment. They also continually reminded us that God had not made a mistake and that He would bless us through William.  God had placed William in our family and we knew in our hearts that he was a gift just as precious as our normal children and that God would give us the strength and grace we needed to love, parent, and provide for him – whatever his unique needs were.
Our lives were turned upside down at first while we adjusted to our new normal of a child with special needs. I unexpectedly had this new responsibility of accommodating Will’s out-of-town therapy needs for his developmental, physical, and speech delays while still parenting two other children, being a wife to a very busy husband, and taking care of a home.  However, our family soon adapted to our new routine and Will quickly became a beloved and meaningful part of our family and did everything we did from going out to eat, to church, to athletic events, and to Bible Study. Our new life had many challenges to overcome but much joy as well. Our family developed new priorities and God taught us much through William, and still does.  He helped us see that our worth, as God’s creation, is independent of any disabilities we might have and that we should not value people based on worldly standards. We are surrounded by a world that values physical beauty, athleticism, talent, and intellectual ability. If you do not possess these qualities, you are invisible and marginalized in our culture. William is none of these but he is happy, loving and funny in his own unique way and a tremendous joy and blessing to our family and community.  
William is now 19 years old and has an engaging personality, a great sense of humor, is very active, and never meets a stranger. He is energized by doing things and connecting with people and enjoys an activity the most if he can do it with someone else.  He loves the piano and all kinds of music and loves to dance. He also loves to swim, tube at the lake, ride bikes, play basketball, rake leaves, build chains with links, play cards and dominoes, and work puzzles. His grandmother adores him and loves for him to visit her on weekends where they enjoy going out to eat, going to church, and playing with links, cards and dominoes.  I can’t go anywhere in town without people coming up to Will to give him a hug and share a kind word. My elderly parents are in a local assisted living facility and Will’s daily visits are the highlight of their day! Will has his own unique personality just like the rest of us and it brings me so much joy every day to see how his fun and loving personality brightens the lives of those around him.  His smile, hugs, dancing, and excitement over making a very long chain, tubing behind the boat, and jumping off of the diving board, warm my heart with joy. You can make him happy by simply giving him a bottle of his favorite blue Gatorade to drink. He is unaffected by the cares and stresses of this world. There is much to be valued in, and learned from, his simple life with simple wants, needs and expectations.  
The most important thing any of us can do is to let God reveal His glory through our lives and gifts.  God never promised us that our lives in this fallen world would be easy and struggle free. He did, however, promise to be with us. (Psalm 23)  In the midst of our challenges and struggles, God calls us to respond in a Christ-like way that draws us and others closer to Him, matures our faith, and brings Him Glory and Honor.  Although I often fall short of this high calling, God has taught me much through William about trust, patience, obedience, and finding joy, in the midst of worldly imperfection. God has used Will to reveal himself to us and give us new insight into what really matters in life. Will has made our family, as well as the world around him, more loving, compassionate, kind, caring, patient, and selfless.  
Galatians 5:6(b) says The only thing that counts is faith expressing itself through love.” God has poured out His abundant love on Will through our family, friends, church, and community; and in return, God has poured out His love on us through Will.  While Will may be “disabled” by the world’s standards, he was created in God’s image and God is “able” to use William, with his disability, to bless others and teach us about God’s unconditional love, compassion, and patience. But God chose the foolish things of the world to shame the wise; God chose the weak things of the world to shame the strong. 1 Cor. 1:27
Will was fearfully and wonderfully made by God and all of his days were ordained by Him and written in His book before he was conceived. Psalm 139:13-16  I am eternally grateful to God for William and the joy it is to parent him and be loved by him.  I cannot imagine my life or family without Will and cherish and celebrate every day God gives me with him!"

Thank you so much for sharing Sarah. Your words and Will's story are so profound. So thankful for that!

To follow Sarah & Will, visit her Instagram & Twitter.

Down Syndrome Awareness Month | Joyful Mamas | Guest Blogger: Hollyce Hammond

Meet HOLLYCE & HUDSON:

Hollyce is an work-at-home Mama to Hudson, Tyler & Emily. She loves sharing about her specially blended family and Down syndrome, among other things, over at her blog, Holding Moonbeams, and her Insta. She also teaches stroller based fitness classes for FIT4MOM.

Hudson, who has Down syndrome is 17 months old. He is a big time flirt and little charmer, blowing kisses and waving to everyone. He's a hard worker - always pushing himself; but when he's done, all he wants is a good cuddle. His smile is warm and lights up his whole face. Hudson is curious about the world; he wants to touch, taste, and smell everything. His real sweet spot is a love for people. Hudson also loves music - dancing, swaying, bouncing, playing instruments. His favorite song is "I Like It" by Cardi B!
Hollyce's words:

I knew a girl when I was younger - I had no idea she had Down syndrome - but what I remember about her is that she was JOYFUL. I'd see her at an annual dance I attended with my father and think - I want to be like her - bright, smiling, friendly, warm, and kind. Looking back now with Hudson's diagnosis, God has preparing my heart to be his mom for a long time. But this has also been a learning journey for me; I didn't know much about Down syndrome, I had quite a bit of catching up to do. What does the diagnosis mean for Hudson? Will he go to school with other typical kids? Will he find a life partner to love and cherish? Will he hold a job and live independently? What I've come to learn is that EVERY PARENT has these worries; while certain challenges are more 'likely' with a Ds diagnosis, there is always worry that you are doing "enough" for your child and that they will grow up to be a loving, compassionate, valuable member of society. The most important traits Hudson have taught me in his 17 months on this earth are the following (and they are important whether you have zero children, 20 children, or live in Antartica):

  • Patience - everyone is traveling their own journey and figuring things out at their own patience. Extend some grace to others.
  • Gratitude - each day has its own challenges and blessings. Be thankful for both!
  • Acceptance - who said life has to happen according to your terms? As a Believer, it was never in my control anyway. I have to accept that certain things in life have to unfold according to His plan - not mama Hollyce's :)
  • Mindfulness - be present. Enjoy the moment. You will miss these pieces of life as they pass you. Love on those around you and give freely and openly.
How does Hudson bring you JOY?

"Hudson sees the world differently - and in a much more beautiful way than those of us 'typical' folks who worry about things that are out of our control or are so stuck in the past that we can never move forward. Hudson brings light to every situation by embracing whatever he is doing and taking everything in. It's also through his love of people that I realize how Hudson will INFLUENCE this world. It's not through being President of the USA (not that it's the most coveted job these days) or CEO of a Fortune 500 organization. It won't be through the tasks and responsibilities he completes and it won't be through financial gains or losses. Hudson will impact the world through spreading his heart full of love and compassion - through people. Even thinking about that moves me to tears. Hudson will love so fiercely and deeply that he will bring happiness to people we haven't even met yet! What an unbelievable gift that is for a human being to give to another."

Thank you so much for sharing, Hollyce! So refreshing to be reminded of all those things. <3

To follow Hollyce & Hudson, visit her BLOG or INSTA.

Down Syndrome Awareness Month | Joyful Mamas | Guest Blogger: Sarah Szuminski

Meet SARAH & HAZEL:

Sarah is Mama to Hazel, who has Down syndrome. She is an Early Childhood Special Educator turned Early Childhood Special Educator at home Mama! She loves sharing her life with her hubby and Hazel on Instagram and especially loves to share how she does this at home with a fun "therapy meets play" focus. 

"Hazel just turned two and a half. She is determined, feisty, hilarious, and the best thing that ever happened to her Dad and I."

Sarah's words:

"We knew Hazel would be born with Down syndrome before she was born. The second half of my pregnancy was filled with doctor's appointments, anxiety, and lots and lots of tears. Hazel took her sweet time arriving earth side but as soon as she was placed in my arms, I felt the most profound sense of peace. Here was my baby, absolutely perfect and exactly who she is supposed to be. Hazel runs into every room waving, blowing kisses, and asking for high fives. She brings smiles to every long line and quiet elevator just by being her. She inspires me to be more myself and to see the worth in everyone I encounter."

How does Hazel bring you JOY?

"I stay home with Hazel after years of working with young children of all abilities. I was so worried being home with her would be boring. Instead, I find SO much joy in helping her meet milestones and in creating learning activities for her. She loves to paint and draw and play with her baby dolls. Every day she wakes up ready to learn and is so very persistent in all she does."

Sarah, you are rockin' this motherhood thing and are such an inspiration! Thanks for sharing, friend!

To follow Sarah & Hazel, visit them on Instagram HERE.

Down Syndrome Awareness Month | Joyful Mamas | Guest Blogger: Amanda Cunningham

Meet AMANDA & RORY:

Amanda is Mama to Owen and Rory and wife to Evan. She is also the owner and creator of The Glory Days Planner, a planner created specifically with special needs families in mind, that will launch in mid-November.


Rory is a year and 5 months old. She is so sweet, funny, smart and loving. She loves to be independent and explore her soundings. Rory is always on the go, keeping Amanda on her toes at all times.


Amanda's words: 


"Rory has shown me you can't assume the worst. When Rory was born we were told and came across a lot of scary things about Down syndrome. None of them have been true. She is progressing, happy and engaged. I feel so lucky to have her and all the families she has connected us with. Rory's life has so much value and potential."


How has Rory brought you JOY?


So much JOY. Every time you look at her she smiles. She radiates love and happiness in such a special way. She has made our whole family more connected and joyful.


Be sure to check out Amanda's amazing planner, inspired by Rory and the unique needs that comes with raising a child with special needs.


You can also find her on Instagram, Facebook, Pinterest & Twitter!

Down Syndrome Awareness Month | Joyful Mamas | Guest Blogger: Erica Schmidt

"One of my earliest life memories occurred just a few months before my seventh birthday. My dad picked my younger sister and I up from school, told us my mom had gone into labor, dropped us off at the neighbors’ and told us my grandma would be coming for us soon. That night, my mom and dad called home to tell us we now had a baby brother named Chad. My sister cried because she wanted him to be named Luke.


The next day, my dad again came and picked us up from school to go meet our Chad. First, we stopped by our house so my dad could sit us down and try to explain to a six and four year old what Down Syndrome was. I don’t really remember the conversation other than that it was the first time I remember seeing my dad cry. Years later, my dad would tell me that I would comfort him in that conversation, saying “Don’t worry, dad. Everybody learns different.”
Over the years, I learned that Down Syndrome in many ways is much more complicated than that, but in others, it really isn’t. Chad, as he is, is the greatest thing that could have happened to our family – to me. Growing up, I was extremely protective of him, but he may have been even more so of me. Our whole family supports Chad in all he wants to do, and he did the same for us. He was at all of my sporting events, and trust me, there were a lot. When I would get injured, he was would cry and have to be near me.
So much of who I am as an adult is a byproduct of growing up with Chad, and I didn’t even realize it. He made me more compassionate; he taught me how to communicate with those who are different; and he taught me about how to be joyful in all circumstances. That kid had more hospital stays in his childhood than anyone should have in a lifetime. Each time, by the time he was discharged, nurses flocked to his room for one last dance, laugh or hug. That’s just who Chad is—that’s who he’s taught me to be.


A teacher in high school once told me, “I can always tell when someone is the sibling of someone with special needs. They’re just different…in a good way.” I’m proud to be one of the different ones."

Erica is one of my dear friends from my days at MIZZOU. I remember envying her for the ease she had interacting with any person, disability or not. So, I wasn't that surprised when she told me early into our friendship that she had a brother with Down syndrome. Chad became the first person I "knew" with Down syndrome and I really only met him a few times when he visited Erica in college. 

The morning that Lindie was born I thought of Erica, Chad, and her Mom and her Dad. I thought of Chad's birth story that she had shared with me years before, and I remember being so grateful for Chad and for a friend to relate to. I also have so much hope for my children's relationships in watching and hearing Erica talk about her relationship with Chad.

Thank you so much for sharing Erica! I love having a sister perspective for all our Mama readers!

Down Syndrome Awareness Month | Joyful Mamas | Guest Blogger: Emily Fox

Meet EMILY & BOONE:

Emily is a Mama to three, living in Kentucky. Her youngest, Boone T., has Down syndrome. She loves sharing their adventures on Instagram and advocating for Boone in their everyday life.

Little Boone will celebrate 2 in just a few months, November 21 to be exact. In a home filled with his sisters' big personalities and high drama, Boone is the antithesis of drama, a laid back, pretty chill, dude until "Alexa" starts playing Mama and Daddy's late 90s rap... then all bets are off and it's a major dance party.
Emily's words:

"No matter how hard I tried I couldn't catch my breath the moment our doctor looked at us and said those words... Down Syndrome. The room was spinning and my body was shaking and the man I always lean on was crumpled at the side of the bed weeping and I couldn't do it, I couldn't breathe. As I laid there trying to catch my breath, my mind quickly drifted to our daughters, then 7 and 11. Their world was about to drastically change with a new baby and now a new baby with Down Syndrome. Guilt sunk in like an anchor, how could I do this to them? Impact their future and expect them to alter their days, their lives for this little human who would need so much. Ignorance breeds fear, right? My ignorance led to fear which led to me not being able to breathe that day. I was completely unaware of the incredible impact he would make on their lives. Now, I breathe easy, full and deep, knowing that these girls have been changed for the better. Their brother has cultivated an unconditional love and fierce passion for advocacy. I watch as they share him with their friends and fight for him when its needed. Little did we know we would all breathe a little easier with Boone T. in our lives."
How does Boone bring you JOY?

"The milestones. The very thing I thought would break my heart, the slower paced, back country roads versus interstate, timeline we are on has changed us. Ask our friends... my husband and I, we are nothing if not "achievers." Boone helps us to slow down, enjoy the ride and find copious amounts of JOY with each milestone when it comes. Rolling Over= JOY. Sitting= JOY. Straw drinking = JOY. He signed the word "Mountain" on our family vacation in the mountains and we all nearly lost our ever-lovin' minds over it. We have JOY because we are so very, very, proud of him and everything he does. Gosh, we are so glad God chose to let us have him!"

Follow Emily & Boone over on Instagram at @emilycarolfox

Thanks for sharing Emily!
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