Category Archives: Down Syndrome

Jimbo

Posted on October 12, 2015 by Angela @ The Mango Memoirs • 2 Comments

DSAM Jimbo

2015-10-11 12.08.23 am

 

One thing I love about being a part of a great big community of families who have loved ones with Down syndrome is that I get to see people who are further along in their journey than I am. One of my favorite families on Instagram is Jimbo’s. Today, Jimbo’s sister, Pam, shares a little glimpse into what his life looks like now and how his pure joy is effecting people every day. You can find Jimbo on Instagram at @jimbo_is_the_man.

 

James, “Jimbo”, is the 9th of 11 children. He is 53 years old and despite the fact that he is non-verbal, he is the funnest and funniest person to be around. He has the biggest and best personality of anyone we know. He will definitely light up the room with his smile and his laugh. We have given him the motto, “no bad days”, because, truly he doesn’t seem to have one. He goes to a day program/workshop Monday thru Friday; he likes to watch t.v., and hang out with his family. Turn some music on and he’s up dancing or tapping his hand to the beat. He loves coffee and diet coke!

Jimbo now lives part-time at my house and part-time at our sister Julie’s house, (I am the 11th and Julie is the 7th), after our dad passed away in 2006. (our mom passed away in 1998)  Living between our two houses was something that began right after our dad passed away, even though we had not planned it that way originally. We must give God the glory for how it all worked out so wonderfully. Our husbands and children have been so incredibly supportive by taking him in without reservation.

His IG account was started by Julie’s youngest daughter, my niece, Amy. A few of our family members were following families on IG with young children with Down syndrome and Amy said that we should start an IG for Jimbo because we didn’t see very many accounts of grown-ups with Down syndrome.  So Amy started @jimbo_is_the_man!
 The families that we have found through this community have inspired us more than you all will know. If our parents could have had the connections that we all have today, they may not have felt alone in their journey. We are very grateful to have found so many wonderful families through Jimbo’s Instagram account.

2015-10-11 12.04.18 am

 

Chromosomally Enhanced shirt from Littlest Warrior Apparel.

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

DSAM LOGO 3

 

 


Share
Filed Under: Down Syndrome

Yoel

Posted on October 11, 2015 by Angela @ The Mango Memoirs • 0 Comments

DSAM Yoel

Yoel

We have another very special post today, because today is Yoel’s 5th birthday! Yoel’s mom, Michelle, took the time to answer a few questions about her relationship with her son for Down Syndrome Awareness Month. You can find Michelle on Instagram at @m_chellesal.

How/when did you find out your loved one had Down syndrome?
Our little firecracker was born at 36 weeks and 3 days. He made his grand entrance with no complications. But as soon as he was placed in my arms my mom had an unsettling feeling something wasn’t right with our baby boy. She didn’t know how to tell me that she suspended he had Down syndrome. She insisted I ask his pediatrician to check if he was okay. Just to reassure her, I did as she told me. To be on the safe side his doctor suggested that Yoel should be tested for chromosomal abnormalities, a blood test called karyotype. The nurses took him back to get his labs drawn, and we were sent home the next day. We loved Yoel so much, we cuddled him, and kissed him all day and night . At his one-month check up, I was told the news that he was positive for Trisomy 21. Yoel was on the examining table with his aunt and I was sitting down. All I could remember were those words, Down syndrome, Down syndrome repeating itself all over in my head. His doctor kept assuring me that all would be okay. All I could do was cry. I cried for my baby boy. I felt like we had the wrong baby with us. I cried for his future. But little did I know that all along he was the one, the little boy I dreamed of, the perfect little boy to fill our home with hope, faith, love, and so much happiness. The future is so bright for him and us. He is our miracle baby.

Yoel2

What were some of the emotions you had when you got the news?
I felt betrayal. I felt lost and scared. I couldn’t believe this was happening to me. I did everything right during my pregnancy. I felt all emotions, anger, hate. I wanted to go far, far away from here with my son and husband. I wanted to prove the doctors wrong, that nothing was wrong with my son. The crying that we did for days helped heal those ugly wounds in our soul. We started to pray, I started to find God and how good he is. That his plan for our journey was the perfect one. He made no mistakes and he made Yoel in his perfect image. He knew what he was doing when he blessed us with him.

One of the most challenging things about having a child with Down syndrome is…
Therapies are so hard to get used to, as well as doctor appointments. Even after four years I should be a pro at keeping up with the scheduling, but I am not.

What have been good resources for you to learn more about Down syndrome?
I do not know if it’s a resource, but I have found families with kiddos with Down syndrome on Instagram to be my biggest resource. I connect with awesome mommies and their awesome kiddos daily. They guide me when I need help. I cheer their kids on and they cheer mine.

Yoel3

 

 

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

DSAM LOGO 3

 


Share
Filed Under: Down Syndrome

Kaycee

Posted on October 11, 2015 by Angela @ The Mango Memoirs • 1 Comment

DSAM Kaycee

IMG_20150825_130301

 

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.

_CMP0052

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!).

IMG_20150930_091938

 

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

DSAM LOGO 3

 

 


Share
Filed Under: Down Syndrome

Eden

Posted on October 10, 2015 by Angela @ The Mango Memoirs • 0 Comments

DSAM Eden

2015-10-10 03.06.40 pm

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.

 

2015-10-10 03.06.54 pm

 

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!

DSAM LOGO 3

 

 


Share
Filed Under: Down Syndrome

Porter

Posted on October 9, 2015 by Angela @ The Mango Memoirs • 0 Comments

DSAM Porter

Porter

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.

007

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.

353

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!

IMG_8095

 

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

DSAM LOGO 3

 

 

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

Collage

 


Share
Filed Under: Down Syndrome, Photo Friday

Madison

Posted on October 8, 2015 by Angela @ The Mango Memoirs • 0 Comments

DSAM MadisonIMG_5262

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!

IMG_3011

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!

IMG_5250

 

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

DSAM LOGO 3

 

 


Share
Filed Under: Down Syndrome
Design by: Bumble + Buzz Design // Copyright © The Mango Memoirs