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Guest Mama – Looking Back

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I’d like to introduce you to Karen today.  Karen is a beautiful mama to a very handsome boy named Caleb.  I’ve been able to follow Caleb’s journey as he competes in the Special Olympics, travels to be part of DSA Programs, and overall as he just lives his life as a pre-teen boy 🙂  I love that I’ve been able to connect with Karen because she has been able to advise me when it comes to these rough toddler years Jana is going through.  Part of our DS community is learning from others and passing that knowledge down.  So I’m happy to give you the chance to meet Caleb 🙂

Looking back, and looking ahead….

caleb6Raising Caleb has been quite a journey so far. We were/are “older” parents to begin with, so…that. And he’s got a ton of energy, so….that! We didn’t exactly plan to have Caleb, 17 years after his sister, but I honestly believe he was sent to us for a reason. Those first days and weeks were filled with lots of emotion – joy, sadness, confusion, anger, concern, but most of all, love. We loved him from the first, but realized that raising him would be more difficult than raising a typical child. I say that not because we loved him any less. But because we know the world still has a long way to go to be an inclusive environment for our kids with disabilities –whatever they might be.

Those first days of his life would also be filled with doctor’s appointments, and therapy visits. We settled into our routine, and wondered if this would be our new normal forever (It isn’t). Later on, Caleb headed off to preschool, and mom-playgroups turned caleb4into playdates with friends. He happened to be one of two children with Down syndrome at our church preschool. Both of them were included in everything. We worked hard on developing communication skills to make that easier. Big-kid school came, and therapies were done in during the day, which made it a bit easier for mom.

Fast-forward to today. Some days, I have a hard time believing our little guy is already ten. 10 is a funny age. Halfway between toddlerhood and adulthood. Caleb’s on the cusp of puberty, and I have my fingers crossed that going through that with a boy will be a little easier than it was the first time J Jana asked me to share what our typical day looks like. It brought me back to a time when Caleb was little; being fascinated with the one lone mom who stayed in our BabyCenter Down Syndrome group. Her son was older, maybe even ten years old. What was their life like? Was it really #morealikethandifferent ?

caleb1For us, the answer is yes, and no. We still struggle with communication most days, and fine-motor skills. (Fingers crossed to work on shoe-tying and other independent skills over the summer). We work more on planning for his financial future than we did our daughter, making sure he had a Special Needs Trust, and now, an ABLE account. We have a binder with his medical life – specialists and insurance information – for easy access. We think about his future, and what that might look like – employment, government assistance, living situation, love life! We help him to understand the importance of good social skills as he gets older. We pray that he doesn’t have many encounters with bullies or overhear disparaging remarks.

caleb8However! Caleb leads a full and active life, filled with friends, sports, school, and community events (see my IG to see all he does!). We are thankful that even though he has a few health concerns (open VSD and hypothyroidism), overall, he’s a healthy kid who loves to do things and meet people. He loves to travel, and we’ve been some pretty cool places. He loves his family, most especially his niece Evelyn. He loves to help around the house, but could care less about showering (!). He likes movies and TV shows and books; trains and cars and nerf guns. We like to do things as a family, no matter how seemingly mundane. He loves his daddy – loves to do things with him.

If I had to pick just one word to caleb3describe Caleb, I think I would choose “Excited!” because he is! He’s shown us how to live life to the fullest, and what it means to enjoy every moment we can. He shows us what unconditional love looks like, and what true friendship is. 10 years into our journey…we’ve learned a lot. But there is still so much to learn from this little guy. So, my advice to you, looking back, is to learn all you can from your child with Down syndrome. Give them the tools they need to fly. Because the world IS changing. There are so many opportunities for our kids today. The world still has a long way to go to be totally inclusive, but I think we are heading in the right direction. Be ready for poss-ABILITIES!caleb2

Peace,

Karen

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Guest Mama – Meet Olivia

I am honored to introduce you to Marina.  She is a beautiful mama with the most gorgeous girl named Olivia.  Olivia is so full of life, happiness and strength.  I’ve loved watching her grow through her mama’s Instagram feed.  She comes from an amazing family and I am so glad to share just a small bit of who she is with you!  Btw…this post made me break down in tears…so good luck IMG_20170303_201003_387🙂

I love her. I love her so much. When I look at her I speak my thoughts out loud. I tell her how beautiful she is. I squeal when I can hardly stand how cute she is. I’ll scoop her up and squeeze her and smother her in kisses. I swear that her sweet baby smell still releases endorphins in my brain. I think she’s so amazing and so beautiful and so utterly wonderful. This is what I think and feel everyday that I’m with her. And when she’s sleeping or I’m away from her, I miss her and that is what I think about.

IMG_20170302_094606_347Sometimes when I take her places I’ll notice people staring. In that moment I can’t help but imagine what they see. Her little bald head, no eyebrows, no eyelashes. Her little ears, the way they curl in, one more than the other. Her almond eyes. The way they turn up as if an artist over exaggerated their slant. Her teeth, the way they are more crooked than most toddlers. Her tongue, the way it tends to peek out of her mouth more often than not. For a millisecond I can see what they see and my heart feels heavy and beats like thunder. They see ‘imperfection’. They see a child that not only looks different because of Down syndrome but appears to be ill because she has no hair from the Alopecia. It’s a double whammy. In those moments I want to scoop her up and run. I want to turn and yell “Don’t stare at my baby!!!” But I don’t. I manage to control myself and steady my hands and my heart. I manage to adjust my eyes too. Then when that moment passes, when they walk away or better yet, smile, then I can see her again. I can see her clearly. I can see what God sees. My perfect girl. I see her beautiful round head that smells so good. I see her beautiful eyes that twinkle and dance when she smiles. I see her rosy cheeks that are soft and sweet. I see her tiny rosebud mouth and her gorgeous smile. I see her adorable ears that are so kissable and work so perfectly. I see her delicate and doll like button nose. I can see her satiny smooth skin and how perfectly pink it is. Then she takes my breath IMG_20170221_211618_978away.

How could I possibly be so fortunate to be her mommy? What good things have I done to deserve her? She brings us so much joy. She makes us laugh everyday. She makes us do and say a thousand ridiculous things because we’re all so crazy about her. We take such pride in every new word she speaks and in every accomplishment no matter how.small. When she carries her baby doll and kisses it, I want to cry at how tender she is. When she wraps her tiny arms around my neck and presses her soft cheek against mine, I’m sure this must be heaven. My daughter is smart, my daughter is beautiful, my daughter is kind and funny. My daughter loves music. My daughter loves animals and coloring. My daughter loves exploring. My daughter loves popcorn and going to the beach. My daughter loves long car rides and reading books together. My daughter rocks a hair bow like no other. Most importantly, my daughter loves people. My daughter will IMG_20170218_094816_315smile the sweetest smile at the biggest, ugliest, grumpiest, smelliest, foulest person she meets and she will exude genuine love and acceptance with every ounce of her being. My daughter is a blessing and my daughter is way more perfect than I could ever wish her to be.

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A little Inspiration

I came across this article and wanted to share it with you.  It is about a woman, Judith, a twin, born with Down Syndrome in 1943.  At the time her family had no idea the full effects of her diagnoses or that she was completely deaf.  She was sent to live in an institution at the age of 7.  From then on, she hardly had contact with her family, even her twin sister.  After many years apart, the sister eventually reunited and Joyce, her twin, was granted guardianship of Judith.  Soon Judith started creating amazing sculptures with yarn, twine and basically anything else she could get her hands on.  This woman, who never said a single word, was finally having a way of communicating.

Joyce recently wrote a book about the girls lives and the amazing art her sister created.  At the age of 61, Judith passes away but her art has lived on and is inspiring both the disabled and typical communities.

Read the full article here : http://www.huffingtonpost.com/entry/judith-scott-joyce-scott-art_us_57c9cdafe4b0e60d31df1b2c

You can also find Joyce Scott’s book here: Entwined: Sisters and Secrets in the Silent World of Artist Judith Scott

57c9e53b170000172ac7750b  “The first piece of Judy’s work I see is a twinlike form tied with tender care,” Joyce writes.  “I immediately understand that she knows us as twins, together, two bodies joined as one.  And I weep

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Teen With Down Syndrome Brushes Off Bullying and Breaks Into Modeling

I am just amazed and inspired when I read articles like this!  I feel like my girl is the most beautiful thing ever.  The Down’s features she has only enhances her cuteness 🙂  God created these children for a special purpose.  They are beautiful and made exactly the way God wanted.  I love that society is finally starting to pick up on how great these kids are!!

Check out the article here: Teen With Down Syndrome Brushes Off Bullying and Breaks Into Modeling

“Many doors will close and many will open,” Gigi told The Mighty in an email. “Always approach your obstacle with a ‘I can’ attitude and with a smile on your face because you are worth it. My belief is that you can do all things through Christ and with prayer nothing is impossible. Never give up and if no one else believes in you I do. We are winning. I am determined to help change the face of beauty.”

How could you not just love a girl with an outlook like that?!  So inspiring!!