Monthly Archives: October 2015

Kaycee

DSAM Kaycee

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Happy 2nd birthday, Miss Kaycee! What a treat to be able to celebrate such a darling little girl’s special day by sharing a few very inspiring words from her mama, Angela. You can find Angela on Facebook and on Instagram as @angelarobbins.

Kaycee had a pretty quick entrance into the world, and I didn’t have to wait long to meet her. But after giving birth to her two older siblings, I knew there was something curious when she came out without even a bit of crying. When I laid eyes on her I knew, I knew she had Down syndrome. At first I just figured I was losing my mind. Only women in their forties have kids with Ds, right? So I just didn’t say anything assuming the doctor would be sure to confirm my crazy. Well on her forth day I took her in to our pediatrician who so sweetly informed me there may be a possibility of Down syndrome. Three long weeks later we got the confirmation of Down syndrome but the surprise of the mosaic form. We had done plenty of research and knew exactly what that meant: nothing. Regardless of any diagnosis, she was still our daughter who we have the privilege of loving on and raising up right along side our others.

She’s now almost two and I can easily say she’s so much like any other kid. She gets into plenty of toddler trouble, has an adorable silly face, and just melts into your arms when you hug her. My favorite quote is this by Kelle Hampton: “Want to know what having a kid with Down syndrome is like? It’s like having a kid.” Every kid, crazy chromosomes or not, is their own kind of special.

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For those receiving a Down syndrome diagnosis I’d recommend getting in touch with your local Down syndrome association. Ours sent us a huge binder full of information, both practical and emotionally supportive. They can also get you hooked up with other families and support groups (both online and local). There are also a few books out there to help you walk through the emotions you may have after receiving a diagnosis, namely “Gifts” by Kathryn Lynard Soper. And plenty of great blogs, too! The Mango Memoirs, of course! Kelle Hampton, A Perfect Lily, Confessions of the Chromosomally Enhanced, The Lucky Few, Deanna J Smith, Normal as We Know It, and Down Right Perfect are all good places to start (just to name a few!).

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Click below to read all the stories from Down Syndrome Awareness Month!

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Eden

DSAM Eden

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Today, our post comes all the way from Australia! Ruth is the proud mama of Eden. You can find Ruth’s blog at PerfectByDesignx2.com. She also has a page for her blog on Facebook and can be seen on Instagram as @perfectbydesignx2.

Eden was diagnosed with Down syndrome post birth. Initially I was flooded with disbelief and an array of raw emotion. Tears, oh the tears! Two-and-a-half years on and Eden is the light of our life. She does not have a disability. She has different abilities. She transforms a room wherever she goes and melts the hearts of all she meets. (Few people can do this.) She has brought out the best in us, her family! Thanks to her, our lives have slowed down dramatically and what really counts (family) is where we spend our time. Eden has overcome many obstacles, one being open heart surgery at 10 weeks old! Eden has met all her developmental milestones (except speech) in the same time frame as her typical peers. That’s huge considering the first three months of her life were spent lying on her back trying to stay alive! We are excited for what the future holds for our girl and the Down syndrome community as a whole.

 

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I recently discovered this amazing video of Eden with her daddy on Ruth’s blog. Click here to watch it. Sooo cute! It will melt your heart.

 

Click below to read all the stories from Down Syndrome Awareness Month!

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Porter

DSAM Porter

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It is our ninth day of Down Syndrome Awareness Month! Today, three-year-old Porter’s mom, Danielle, tells of her interactions with the genetic counselor as she first learned of her son’s diagnosis. Danielle writes at The Many Adventures of Penny and Porter and can be found on Instagram at @mammat10.

 

We had our twelve week ultrasound on a Friday. The tech and perinatologist gave the baby a clean bill of health. We told family and friends that weekend. We were riding high on the bliss of being able to give our daughter a sibling. We made her a big sister shirt and asked her if she thought the baby would be a boy or girl.

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On Monday morning, a representative from Genzyme left me a voicemail. I returned their call immediately, but it took them eight hours to call me back. When they did, they told us our baby had a high risk of having either Trisomy 21 or Trisomy 18. We wanted to be prepared at the birth, so we had an amnio. If our baby had minutes or hours to live, we wanted our family there. The genetic counselor called me at work and said “I’m sorry, but your fetus has Down syndrome.”

We weren’t sorry. It meant our daughter was going to be a big sister. It meant another person would call me mommy.

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The genetic counselor shared so many negatives with us. She didn’t tell us about the amazing Trisomy 21 Program at CHOP that would become such a resource to our family. She didn’t tell us about Buddy Walk, an event that would carry more excitement than our son’s birthday each year. She didn’t tell us about the local Down Syndrome Interest Groups that would help us learn from the most amazing families. She didn’t tell us about the Down Syndrome Diagnosis Network Rockin’ Mom’s Group that would link me with moms whose children were the same age as our son, who would share advice and be just a message away for support. And, she didn’t tell us about the love, the way this little boy would bring our family together and make us stronger. The genetic counselor missed the boat. I wish she could know Porter. We’re so happy he’s ours!

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Click below to read all the stories from Down Syndrome Awareness Month!

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Photo Friday is a little glimpse at our week in pictures. To see more, follow @TheMangoMemoirs on Instagram!

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Madison

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Happy 11th birthday, Madison! To help her celebrate today, her aunt Morgan answered a few questions about Madison. You can find Morgan on Facebook as Morgan Brooks, on Instagram as @MLBrooks0909, and on her blog. I had the privilege of meeting Madison in person almost two years ago, so it’s pretty special to be a part of her birthday celebration today!


When did you find out your niece had Down syndrome?

We found out after she was born. My sister’s pregnancy was textbook and didn’t warrant any extra tests.

What are a few of Madison’s favorite things?
She loves to sing and act out her favorite movie, Frozen. She loves pizza and loves to be outside playing!

What is something you want everyone to know about Madison?
She is silly and she has the purest herat. She loves to give hugs!

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What is something you don’t think many people know about Down syndrome?
Just because they have Down syndrome, doesn’t mean they don’ t have their own gifts and talents! They are super unique and have a lot of love to give!

The most wonderful part of knowing Madison is..
How special our bond is!!!!!!!!! LOVE the pure simplicity of her heart!

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Click below to read all the stories from Down Syndrome Awareness Month!

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William

 

DSAM William

 

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Today Elena, William’s mom, tells of her emotions when she first met her baby boy (aka ‘my buddy’), who is now almost 7. You can follow Elena on her blog or at @elenakatheryn on Instagram.

When William was born and we saw his face, we knew right away he had Down syndrome. In that very instant it’s like your whole world is crashing around you. No part of you thinks that it could possibly be a good thing. You wonder how it will affect his, then 15 month old, sister. All your visions of who he will be as a child, teen and adult vanish. There is nothing but grief. A beautiful baby was born but the fear of the unknown rips that joy from you.

I wish every day that I understood then what I do now. Having a child with Down syndrome opens your eyes and heart. Things that used to be a big deal, no longer matter. I am a better person just by being William’s mom. Watching him work so hard for every little milestone makes me truly appreciate every little thing that he can do. And it doesn’t stop with him. I appreciate my other children more as well. I have greater empathy for everyone and their struggles. I am able to live in the moment and appreciate what I have. I feel like it sounds like such a cliché but it is the truth.

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The most important part of having a child with Down syndrome is how they impact their siblings. My daughters are both better people for having known William. I think the greatest example comes from my 8 year old. The other day she said to me, “When you are pregnant you don’t always get to have a baby with Down syndrome, so maybe when I’m a grown up I can go to an orphanage and get a baby boy with Down syndrome because that’s what I’m used to and I like it.” Her heart is that big just from loving her brother, who happens to have an extra chromosome.

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Click below to read all the stories from Down Syndrome Awareness Month!

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Wren

DSAM Wren

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Today’s post comes from Mollie, mother to Wren. I absolutely adore this sweet family! I melt every time I see little “Birdie” pop up in my Instagram feed. And guess what! Today is Wren’s third birthday!! We are so happy to celebrate with her on her special day! You can follow Mollie and her family on Instagram at @mollieglasgow

How/when did you find out your loved one had Down syndrome? 

We found out shortly after Wren’s birth that she had Down Syndrome and a heart defect. She was born 4 weeks early and there were no indicators prior to her birth that caused her doctors to suspect any health issues or genetic disorders.

What were some of the emotions you had when you got the news?

To be honest I was just completely shocked by Wren’s diagnosis. I didn’t quite understand what it meant for her to have Down Syndrome. I remember feeling guilty, like I should have just known that something was going on during my pregnancy. I don’t remember feeling sadness but just confusion at times. I felt completely incompetent and immature to be given such a huge responsibility in being Wren’s caregiver. She was in the NICU for the first week of her life due to trouble with her body temp and oxygen levels. I felt helpless and clueless but from the beginning she was a fierce little girl. She taught me very quickly not to put limits on what she could accomplish. I realized in that first week that all that mattered is that I was there for her and that I was willing to believe in her. I might have been the worst choice, in my eyes, to have a child with special needs but I knew that I didn’t want anyone else to take my place.

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How did siblings respond to the news of Down syndrome?

Wren’s big sister Willow has always been her biggest fan and cheerleader. Willow was three when Wren was born and it was a love fest between those two from the very beginning. I have learned so much about how to approach Wren’s diagnosis from Willow.  From day one she has embraced Down Syndrome in the most beautiful way. At three, Willow knew nothing about Down Syndrome but would point out all of Wren’s little traits that she loved most. She would obsess over Wren’s little almond shaped eyes that were exactly the same color blue as hers. She would hold Wren’s tiny hands and kiss her chubby short fingers. As Wren has grown, we have had to have discussions with Willow about her delays in sitting, crawling, walking, talking. We would explain that Wren will have to work extra hard to accomplish things. Willow just saw that as an opportunity for her to be involved, and sometimes overly pushy, with Wren’s therapy. She probably drove our in-home therapist crazy with all her questions and literally jumping in the middle of therapy to motivate Wren and help keep her happy. When Wren was born people would always tell us that Willow was going to be Wren’s greatest teacher and biggest strength. But what I have seen is that they are each others greatest strength. Willow is patient, caring, kind, accepting and I attribute that to Wren. Wren is confident, brave, silly, loving and I attribute that to Willow. Wren now has a little sister, Pippa, who is 7 months and I cannot wait to watch their bond grow and watch Wren blossom as a big sister. Willow is PROUD to tell people that her sister has Down Syndrome because it is something that she loves about Wren. To this day when asked to describe Down Syndrome, out of the mouth of our now six year old, Willow will exclaim, “beautiful”!! And it truly is. It makes Wren beautiful. It makes Willow beautiful. It has made our life beautiful.

If someone I knew was told their baby would be born with Down syndrome, I would tell them…

Get ready for an amazing journey ahead. Not every day is going to be easy, and there will be a TON of worrying in your future but there will JOY beyond measure. Your eyes will be open to an entirely new outlook on life and you will never want to look back. You may not feel like you are cut out for this or even worthy to raise a child with special needs but, the most important thing is to love your baby and realize that God’s plan is beautiful and perfect.

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Click below to read all the stories from Down Syndrome Awareness Month!

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