Life with Down syndrome: What Moms Want You to Know!

Life with Down syndrome: What Moms Want You to Know! | Twin Cities Moms Blog

My top hashtags for my Instagram page are #lifewithdownsyndrome and #theluckyfew. My 4-year-old son Ronin was born with Down syndrome and it was a whirlwind with his birth diagnosis. I wasn’t really sure what life would be like with Ronin. It’s my mission in life to show everyone what #lifewithdownsyndrome can really be like and to share with everyone the knowledge and life lessons I’ve learned from one tiny extra chromosome.

I’ve met hundreds of moms in our local area, as well as thousands of moms from all over the country and across the world, who all share the love of our Down syndrome community that is nicknamed “The Lucky Few”. While our lives are different due to diverse life experiences, cultures, and attitudes, one thing we can definitely show you for this month of October, which is Down syndrome Awareness month, and all year long, is the love we have for our children just the way they were meant to be! Here is a showcase of other moms and their children and what #lifewithdownsyndrome and being part of #theluckyfew means to them and their family!

Addie, Jonas & Alvin:

Addie

“I have seven month old twin boys – Jonas and Alvin. Jonas has Down syndrome and has a unique gift of being mainstreamed since birth. I felt that Jonas had a lot to learn from Alvin though I now know it is mutual. I learned that we do not have to fear Down syndrome or limit Jonas simply because he has a diagnosis. I have high hopes for all my children.”

Chris & Baur:

Chris&Baur

“#lifewithdownsyndrome is all about adventure! Life has been filled with amazing opportunities to meet people, go places and do things, and push ourselves outside of our comfort zone (camping – yuck!) to celebrate more than we could have imagined. We are happiest when we hear the sound of Baur’s infectious “cackle” laugh from the backseat as we embark on the next experience and explore, enjoy and take selfies galore living in the moment and cherishing the little things.”

Jodi, Kayella & Leo:

JodiKayellaLeo

“To my family #lifewithdownsyndrome has many meanings and they aren’t all rainbows and butterflies! Here are some words that I would use to describe what #lifewithdownsyndrome is like: happiness, frustration, advocacy, inclusion, constant goal setting, therapies, friends, community, nonverbal, expectations, reliance, independence, stubbornness, hilarity, tears (of joy & sadness). But one thing I know for sure…I would not change a thing about it!”  

 

Susie & Linus:

Susie&Linus

“Having a child with Down syndrome comes with all the firsts like a typical child. It unfortunately also comes with also with the firsts of being made fun of for being different. My son and our family are not defined by his diagnosis. I will always be his advocate, a voice alongside his and most importantly his mom that will show the world that my son does have worth and that we are not suffering.”

Krista, Owen, Erin & Benjamin:

ErinKrista

“Down syndrome surprised our family 12 years ago when Owen was born and thanks to everything he has taught us, we knew when his cousin Benjamin was born with an extra 21st chromosome, he would be just like the rest of his cousins, all of them. These determined boys have thrown us a couple of curve balls, but so have their siblings. Together they will break down barriers and stereotypes. We are lucky to have them.”

Gina & Gunnar:

Gina&Gunnar

“Our lives haven’t changed much since having Gunnar, other than the friendships we’ve made. The instant bond we make with families who also have a child with Down syndrome is the best thing about T21. The matching tattoos, love for celebrating little accomplishments, and advocating our children’s worth make an unbreakable bond. I’m so thankful to have a #lifewithdownsyndrome!” 

{Photo Credit:Ben Johnson Photography }

Michele & Evelyn:

Michele&Evelyn

“She is deep joy and sincere love. She embodies compassion, empathy, strength and determination. She is patient, kind, and teaches us how to love graciously and accept freely. Her life has meaning, purpose and value. She has dreams and hopes for her future, and we are blessed to have her as our child. When she was born, I cried. I cried because I didn’t realize how much more I needed her then she needed me.”

Rachel & Nathaniel:

RachelNathaniel

“#lifewithdownsyndrome” is truly inspirational! Our son has taught our family so many things in the five years he has been on this earth. Every day with him is filled with just a little more patience, a little more smiles, and lots of love! Our Nathaniel is Down Right Perfect!”

Erin & Drew:

ErinDrew

“Drew joined us through adoption last year. Choosing to invite another child with special considerations into our family took some time and thought of course, but now I don’t know what our lives looked like without him in it. This brave human being brings joy and sass to everyone he touches. Chromosomes or a less than typical medical file should never block any child from the life-long love and advocacy of a family.”

Gloria & Riley:

Gloria&Riley

“Riley is the sunshine of our lives, her sisters love her from here to the moon. She has stopped the clock and is teaching us to live one day at the time. This new journey taught us to develop new skills and to be proactive parents. Riley had taught us that the sky is the limit and her persistence and continued successes assure us that she is a super girl! We don’t have to worry about what the future holds.”

Stephanie & Yasmine:

Stephanie&Yasmine

“Our daughter, Yasmine, has already impacted and taught so many of us a different way of viewing life in the two years she has been alive. I can only imagine the footprint she will leave on us, as she grows into her own beautiful little human. It is amazing how the support in our community and connections are endless and because of social media we are more connected than ever.”

Kathleen & Mack:

Kathleen&Mack

“It’s said the more things change the more they remain the same. Just so with Down syndrome. There’s that wrenching, seemingly life-altering beginning, but that passes. You awaken one day, find all of the pieces of your better self right where you left them and get on with being the best parent you can. All along, your better self rises. For you and most of those closest to your child. I am in awe of the gift I have been given.”

 

 

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Erin is a stay at home mom during the day, but to get a break and talk to adults, works part-time retail at night. Her four boys- husband, Jakin, and three sons, Miles (2010), Dylan (2011) and Ronin (2014), keep her very busy, but she still has time to volunteer for the Down Syndrome Association of Minnesota as a support group leader for the south of the river area and also is involved with many resources that pertain to special needs. Erin could drink iced coffee all day, loves anything 80's, enjoys watching Star Wars with her boys, is always taking pictures but is never in them, wishes she had more time to play golf with her husband and could eat pho everyday. Her current goals in life are to write a book, travel to Vietnam where her dad is from, and find ways to manage health and fitness while being a busy mom. She enjoys displaying her life in pictures on Instagram @erinstatz, and also updates her blog when she can at www.ifitoldyouhisstory.blogspot.com.

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