Tuesday, October 30, 2012

So Close {a guest post}

2 What are your thoughts?
So, it's Down Syndrome Awareness Month. October is the month that we bring awareness. We celebrate our kids. YAY! And for the most part, I do that. Every day on Facebook I've been posting cute baby pictures of Kennedy and sharing statistics and facts and I LOVE my daughter. Let's face it, she's a rock star. If you know anything about her, you know that she has overcome A LOT with a huge smile on her face and said, "Now what?!" She amazes me over and over.


For one minute, I am going to step away from the yellow and blue pom poms and I'm going to whine. Just for a second. Because sometimes, having Down syndrome isn't fair. People ask me all the time if, given the choice, would I take it away from Kennedy. And I wouldn't. Because while I do not believe that Down syndrome defines her, it IS a part of who she is. If she were not born with Down syndrome, she wouldn't be HER.


She also wouldn't have to work SO DANG HARD at every freaking thing she does EVERY single day. I watch her struggle in school... to read, to write, to keep up with her friends, and she's close. She's so close. And she's doing a GREAT job, but she knows she has to work twice as hard to do what everyone else is doing. And it's frustrating for her.

I listen to her when she comes home and says things like, "I was in PE, but I just. couldn't. do it." Her favorite class. She loves it. And I know her friends encourage her. And I'm sure she's close. And I want to tell her, "Baby, I can't make those baskets either." But sometimes that just doesn't make a difference.

I watch her struggle in dance. Something she LOVES more than anything else in the world. She wants to get it JUST right. She watches herself in the mirror. She practices in her room. Every day. And she's SO close. But she knows it's not quite perfect. She knows she's good, but maybe just not good enough. And sometimes, that hurts.

Sometimes I see my daughter through the eyes of the rest of the world. They see Down syndrome. And that's not fair. They want to put her in this box and say, "She can't." I see this beautiful, smart, amazing, self-confident, talented little girl who can do anything she sets her mind to. I have NO doubt about that. She has worked harder at everything every day of her 8 years of life than I have in my 33 years, and sometimes it's STILL not good enough and that just sucks. Some days it makes me want to scream. Often it makes me cry.


I will brush the tears away. Like I always do. I will pick up my blue and yellow pom poms once again and I will pick Kennedy up from school in a little while. And when the "world" tells her that she's not good enough, that she's not smart enough, that she's SO close, but maybe not close enough, I will pull her tight and make sure she knows that she is always the VERY best Kennedy in the whole wide world and I'm so proud of her for working so much harder at life than anyone I know.

Happy Down Syndrome Awareness Month
About the author: Renne Garcia blogs at Like With My Special Ks where she takes on day to day life with her five amazing children: Kassidy, Kameron, Kennedy, Keeghan & Kellsey, and a husband in the Military. Join them as they face issues with Down syndrome, Leukemia, Deployments, and every day life with 5 young kids!

Monday, October 29, 2012

It's Only Hard Sometimes {a guest post}

3 What are your thoughts?
Lately I have been noticing a lot of people staring at us when we are out. I know it's not common to see two children with Down Syndrome in a family, so it doesn't bother me that much.

You can usually tell what a person is thinking (when they are looking at us), by the expression on their faces. Most people look for a while and then smile. Some people, not many, look away in disgust. Some people look at us with pity.  

Sometimes I wish I could carry cards in my purse and hand them out based on what I think the person looking at us is thinking.  For the people who smile at us, I would give them a card that says, "You got it, we have a pretty good life!"

For the people who look away in disgust, the card would say.... wait, those people don't deserve a card.  Never mind.

For the people who look at us with pity in their eyes, the card would have to be relatively big. It would say...
"Oh, please don't pity us.   
We had a prenatal diagnosis with our 6 year old.   
We chose her.   
She is a huge source of joy to us.   
She has struggled with so many things 
and we are incredibly proud of her. 
She is our hero.  
As for the baby, we chose her as well.   
We adopted her~ she came to live with us when she was 6 months old.  
She is incredible.   
We have an open adoption and a great relationship with the birth parents.  
She is loved beyond belief." 

Along with the cards, I would love for them to take a little peek into our lives.  
I wish they would have been at our breakfast table this morning when Lexi was fussing, so Lila reached into the cereal box and handed Lexi a piece.  Lexi immediately threw it across the floor. Lila said, "Wexi, dat wasn't nice.  I give you another chance".  She reached into the box again, handed another piece
of cereal to Lexi, and it went flying across the kitchen. Lila said, "Dat's ok, sweet girl, you don't feel well. You getting you teeth!" 
In the playroom this afternoon~ 
Lila was jumping full force on the mini trampoline when Lexi crawled up on the trampoline and tried to stand up. Lila stopped jumping, reached down and gave Lexi a hand to steady her balance.  
In our kitchen tonight when Lila was dancing around and Lexi was trying to dance with her ~ falling down about every 4 steps then getting back up to join her big sister.  
In the bathroom tonight while Lila was sitting on the potty and Lexi was sitting on a stool, hanging on her big sister's every word, watching as Lila sang Twinkle, Twinkle Little Star and doing the motions.  Lexi was trying to do the motions with her and Lila was cheering her on. "Good job, Baby Wexi!  You doing it!".

Is it hard sometimes? 
I've never experienced anything in life that wasn't hard at times.
I raised two typical kids and that wasn't easy all the time.  
Parenting is a tough job.  
Do the good times outweigh the tough ones? 
In a huge way.   
Would we trade our life, change our choices? 
Not in a million years. 
Not for all the money in the world.  
About the author: Linda lives in Colorado with her family. She is blessed to be the wife of an amazing husband and the mother of 5 awesome kids including her beautiful daughter-in-law. Linda is a stay-at-home mom and an avid volunteer. She started her blog, "Lila's Miracle Life" because her daughter with Down Syndrome, Lila, has had a number of health issues and wasn't expected to live beyond birth, if she made it that far. She is now 6 years old and a joy to her family. Linda's family recently adopted another little girl with Down Syndrome. You can follow their story at Lovin' Life With Our Blue Eyed Beauties.

Tuesday, October 23, 2012

Down syndrome and the brain

0 What are your thoughts?
I asked if there were any questions you had regarding Down syndrome, and this was a great question to ask:

"I am curious about Down syndrome and how, if any, it affects brain chemistry, comprehension, and skills (are there just delays age wise, lags, new ways of doing the skills, or incomplete skill learning). A child we know has a specific mental disorder which effects skills (not saying DS is a mental disorder, but only comparing this to how the brain is effected and therefore skills) and I have been very interested in the ins and outs of it."

First of all, this is probably the greatest challenge when any parent has a kid diagnosed with Down syndrome, because let's be honest, we all want out kids to be smart. This is also the reason why we fight so hard when people flippantly use the word retarded. This is why talking about our children having an intellectual disability is not our favorite subject.

However, putting emotions aside, yes, most people with down syndrome have a certain degree of an intellectual disability. Here is the thing, people with Down syndrome learn different, and we are just beginning to understand how their brain functions.

People with Down syndrome also have hypotonia (or low-muscle tone). This affects much of learning, since we have muscles...everywhere! Think about all the learning babies do when they begin to crawl and move around, think of how curious toddlers are as they begin to walk. For kids with Down syndrome, because their muscle tone is low, these things happen later. So all the things that kids learn as they explore, will happen later only because that is when their bodies allow them that freedom.

Low muscle tone also affects fine motor skills. While other kids are holding a crayon and coloring, it takes a lot more work for a child with Down syndrome to have the strength to hold a crayon properly and have the precision of small movement to do things like color or trace letters. So imagine school, where  a kid with down syndrome is already lagging behind, not because they don't know their letters, or even sight words, but maybe because writing is so hard and everyone else is going so much faster. Frustrating, don't you think?

And there is speech. Did you know that your tongue has lots of muscles? There are more muscles in your mouth and tongue and face than anywhere else. People wrongly assume that because my kid has poor speech, that she is not smart. that she doesn't understand, or that she doesn't get it. let me assure you, she does! For example, my daughter is self-conscious about her speech, so she chooses not to talk to other people, because she knows they won;t understand her. To me, that is a sign of a smart kid.

We are just beginning to tap into the potential of individuals with Down syndrome. So while there is a lower IQ, we are beginning to see that it is not what we thought it was. More and more people with Down syndrome are breaking stereotypes. I love Pablo Pineda, a Spanish man with down syndrome that has 2 college degrees he earned the hard way. No special curriculum, no pat ion the back. it took him more years than some people, but he did it! He holds a teaching job (yes, like a real one!).

So is there a cognitive difference. Yes, there is. Is how smart we are (meaning our IQ) what determines the value of our lives? Let's all hope not, because that means that there would be a lot more people with more "value" than us, and that is just not a right way of thinking.

Does Nichole have more challenges than her oldest sister? Yes she does. But, she doesn't have to do it alone, we are with her every step of the way, and it is not a burden, it is a pleasure, it is a joy, it is so different than I ever imagined it would be.

Monday, October 22, 2012

Defining Moment {a guest post}

1 What are your thoughts?
Pinned Image
When Bridgie was born there was for me a very real and transforming moment.
In the middle of the night, in a dark hospital room, my husband asleep on the pull out sofa thing, my newborn daughter asleep in the bassinet.
It had been a long day that culminated with a beautiful baby girl with sparkling blue eyes and the cockeyed glance.
The big girl version of the cockeyed glance
Baby Bridgie brought something extra with her.  No not a chromosome or a medical issue. 
Bridgie brought peace.
Bridgie brought a long overdue peace to my hardened, burdened, confused heart.
It was instant that feeling of peace.
I saw her little face all swaddled up as they brought her to my side after the c-section.
I knew two things in that instant.
Down syndrome and peace.
They took her away and I marveled at what had just happened as I lay under layer upon layer of warmed blankets feeling the warmth of the morphine deep in my veins.
My human brain tried with all it's might to tell me to scream out, what's wrong with my baby!!!????
Over and over this scenario played out within me.
And each time, my heart answered with peace.
Late that night in the dark of the room.  I tried to play devil's advocate with my heart.
Down syndrome, what will it mean.  Will she live?  Will Erin and Eoin accept her?  Will she burden them? 
I tried with all my might in my post-morphine mind to make myself think logically.
Down syndrome is bad, right?
We don't want this, we can't do this, right?
I tried to push past the lucidity of the peace that enveloped me.
I tried to analyze this with my hardened, burdened, confused heart.
I succeeded in working myself up.
And as fast as I brought it on, it was gone.
The peace, the peace I could not fight.
What I knew was that I loved this little girl ferociously and nothing else mattered.
In this day there were many defining moments.
The loudest, most clarifying, and pervasive moments were the unspoken.
The nurses who said nothing about our baby girl who obviously had Down syndrome.  They knew it we knew it and we said nothing.
Looking back, I was selfishly keeping her and her potential diagnosis to myself because I did not care or want to hear what they thought or had to say.
I already knew what I needed to know.
There was the unspoken by my husband reeling in his own way.
Not a word of negativity, not a word of nonacceptance.
Only Love.
Somehow, we mangled through that first night each in our own cocoon.
Feeling alone, feeling scared, feeling what we did not exactly know.
What we do know is that we were not alone.
Pinned Image
About the author: Cindy Bryl, a mother to three perfectly crazy kids, tries to lead a simple Christian life in the suburbs of Maryland. Teaching her kids to have great manners, to be kind, and walk in the steps of the Lord while maintaining her sanity by continuing her own walk with the Lord through triathlon training. For more rantings and ravings about her 'five family' please check out her blog: Life is simple, it's just not easy.

Saturday, October 20, 2012

"Ooo" on Down Syndrome and Sibling Relationships {a guest post}

2 What are your thoughts?
"Ooo." I have no idea how he came up with it but that's what Marty calls his younger brother, Silas. He used to sign "baby" for Silas when he was an infant, bringing me "baby's" soothie when he cried, sometimes even a blanket. He'd pat "baby's" head gently and not so gently, maybe giving it a good rub before trying to poke him in the eye. Then Silas became big enough to sit and play with Marty. That's when "Ooo" emerged.
I didn't really know what it would look like for Marty to be a big brother. I don't know many kids with Down syndrome who are the oldest sibling; many families we know their 'surprise' is the baby of the family or somewhere in between. Marty was our firstborn. What was this going to look like? I tried hard to imagine Marty and Silas' relationship, but my image has since paled in comparison to the beautiful reality of brotherhood I see today.
1st time meeting "Ooo"
"Hold the Baby"
On the cold November morning Silas was born, I eagerly anticipated Marty's arrival to the hospital to meet his brother for the first time. My husband ushered him in and held him up to see Silas resting in his grandma's arms. Months beforehand we primed him, letting him carry around one of my old cabbage patch dolls, signed "baby" to him, showed him how to be gentle with it hoping it would get him used to the idea of a little person about to enter his life. Now with the newborn bundled before him, would he be able to make the connection? The room erupted in cheers after Marty peeked at Silas and signed "baby." He got it!

Marty soon wanted to play "Hold the Baby." I would put Silas in his lap for a few seconds, he would look down and laugh at him, then sign "all-done" and I would pick him up again. Over and over and over; "Hold the Baby" never got old.
Laundry fun
Perhaps Marty had an epiphany when Silas started becoming more interactive with him thinking "There is more to this kid than just crying, eating and sleeping--and funner games to be played!" Games like "Fetch" (a favorite) though it involves Marty taking toys (sometimes large enough to make a crash) from Silas and tossing it in the kitchen or down the hall. Silas happily plays along though and speedily crawls after whatever's been thrown for him to fetch. The two of them also play "peek-a-boo" around corners and take turns opening/closing doors for the other to open. There is the occasional "Sit on Brother" where I nearly panic at the sight of Marty sprawled across Si, then calm down and laugh with them as I realize that the squeals coming from the younger brother are those of delight and not anguish. (Oh, how boys 'play'!) When these funner games between the two of them had begun to take shape, suddenly Marty stopped calling Silas "baby" and he started calling him "Ooo."
Rise and shine!
The boys share a room together in our small apartment and every morning Marty climbs out of his toddler bed and into "Ooo's" crib to wake him--which my husband and I don't always appreciate, especially predawn, but it's become a happy morning ritual for the two of them and it's hard to stay upset. Usually we're clued-in to their wake-up routine by giggles crackling through the baby monitor. When I go in to get them they are jumping up and down in the crib like caged kangaroos ready to pounce at the morning. (Who needs coffee with this greeting?) Sometimes I end up getting Si out of bed before Marty wakes up. When that does happen, "Ooo" is the first person Marty asks for upon waking--making sure to check the crib and see if he's there before we leave the room.
Later in our morning, Silas and I see big brother Marty off to preschool and pick him up in the afternoon. In the backseat I am serenaded both ways by giggles and squeals as they make faces at each other. And when Marty comes down the hall to meet us at the end of his day, I get a quick "hello" and he peeks in the stroller to give smiles to his "Ooo"--who flashes all 3 cheeky dimples at the sight of him.
We share everything, even breakfast!
"Ooo." We don't know what it means. We call Silas by his name or call him "brother" around Marty, and neither of those words sounds like 'Ooo' to us. I like to think it is a term of endearment that began out of a relationship between two brothers who share more than just an existence together, but life together in precious moments like the ones mentioned above. In those moments I shake my head and wonder what in the world makes anyone believe that Silas is a sibling who 'suffers' or is somehow at a loss because he has a sibling with Down syndrome. Marty and Silas are brothers first and foremost; an unbreakable tie. Anyone who considers it 'suffering' to share in their brothers laughs, tears and triumphs all because of an extra chromosome are settling for far less than one of God's greatest gifts. That's the saddest thing I can imagine.
Silas adores Marty! He has to be wherever his big brother is--even if that is in the bathroom being potty trained (he's been peed on more than once but hasn't learned his lesson yet...). They are the the best of friends and teach each other so much. Marty taught him how to throw a ball and Silas taught him how to crawl without the 'pirate' effect (Marty used to prop one of his legs up and out when he crawled, pushing off with it). They balance each other so well: Silas is sugar--always smiling, always laughing and easy-going--and Marty is spice--a bit of sass and mischief with the right amount of sweet. God knew what gifts they needed in each other and paired them this way. I can't imagine them being apart.~*
About the author: Amber writes reflections and sometimes hysterical commentaries on the beautiful life that God has given her from her perspective as a mom, a wife, and a woman: She is a SAHM to two boys--Marty (blessed with Down syndrome) and Silas (blessed with a happy disposition) with another little sibling on the way! Her hands might be full, but so is her heart and that's what matters! She's been married 8 years to her fun-loving husband, Martin, who makes the journey that much sweeter! God is her solid rock and foundation whom without I would simply implode. Visit Amber's blog: Outnumbering the Sand

You can also find more posts about sibling relationships and down syndrome HERE.

Thursday, October 18, 2012

A message from a sibling {a guest vlog}

0 What are your thoughts?
Hey everyone! My name is Ashley , I have one biological sister, Laura, who has Down syndrome, and my family is also in the process of adopting a little girl, Kamdyn, who also has Down syndrome. I am so honored to be able to do a guest post on Ellen's blog!

Instead of just writing something for you all, I wanted to share with you a video that I made recently about my thoughts on being a sibling to someone with Down syndrome. When someone first finds out that their child has Down syndrome or might have Down syndrome, one of their biggest worries (I've noticed) is how it will affect their other children in the future. So, I decided to make this video to try to help ease worried parent's minds. I hope that you enjoy the video. I had so much fun making it!

Happy Down Syndrome Awareness month!

Visit Ashley's blog: somethingbeautiful1025.blogspot.com

Tuesday, October 16, 2012

A Treasure that Brings Joy {a guest post}

1 What are your thoughts?
When our sweet Elizabeth Clare entered the world on August 10, 2011 and we heard her cry, I wept and wept and wept. I wept in joy and in relief. After losing our dear Andrew Jon two days after his birth at 26 weeks gestation almost two years earlier, this was a very hard pregnancy. I was always waiting for the bad news to come. Waiting for the doctor to come in after one of our many ultrasounds and say, “I’m so sorry...” Waiting anxiously to see if we would hear the baby’s heartbeat at the regular check ups. Waiting in fear that I would lose this baby too. It was so hard to trust in the Lord and to wait in hope. To hear her cry was the greatest sound in the world!

I knew something was wrong when two nurses came in the next morning and told me they had talked to my doctor and that I should call her once my husband and I were together. Not able to wait, I called right away. “What do you see when you look at Elizabeth?” my doctor asked. And I started to cry. I told her the things I’d noticed that morning as I took the hat off to get a good look at my beautiful girl...small ears, different shaped eyes, something different with the shape of her head and her nose...yes, the nurses had noticed those things too, along with some other physical markers that were consistent with Down Syndrome and they wanted to do a blood test to be sure. More tears. Tears for the dreams I didn’t even know I had for her that now seemed to die with those words. Fear of the unknown; what will her life look like?...will she have friends?...what kind of care will she need?...tears. And then, immediately after that I heard the words: “She has been chosen for us and we have been chosen for her” and “I’m going to learn to love in a whole new way” go through my mind and heart.

I called a dear friend from the hospital. Getting her voice mail, I left a message. She called back a little while later saying, “When I heard your message I thought ‘The Lord loves the Lichty’s so much. They have a Saint in Heaven and a saint on earth!’” And I was so blessed by her beautiful response. Her joy and excitement helped to ease my fears. She knew, in loving their precious son with special needs, what a gift we were being given.

When my husband Joe, got to the hospital later and I told him about Elizabeth’s diagnosis, his response was, “I don’t care, she’s my daughter!” He immediately picked her up and snuggled his precious little girl. We shared the news with people by saying that Elizabeth was born with an “extra chromosome of love!” And it’s so true!

We love loving her! Her older brothers delight in delighting her. She makes us all better and we want to be better for her! She has brought a new joy and a new spirit to our home. We don’t know what the future will hold or what challenges we will face, but that is just as true for all of our children. Our job is to love her and help her reach the potential God has for her, just as it is for each of our children. When we say our family prayers more than one brother always prays, “Thank You God for Elizabeth and the joy she brings us!”

How do I respond to people who share that we “have already been through so much?” and “Why did this happen to you?” I tell them, “We are the blessed ones! Don’t feel sorry for us! We love her so much! We can’t imagine life without Elizabeth!”

Yes, there are doctor appointments and specialists. And there is therapy and interventions through the school district. Yes, there are days of anxiety and fear. Yes, there are questions and stares. Yes, there is all that...but there is so much more focus on the life and the love and the joy and the laughter that makes our home and our family complete. Don’t be afraid! We never lose when we choose to love!!

We wouldn’t trade Elizabeth for anything! I can’t look at her and not smile. Her life is a gift, a precious gift, and she is going to teach us about life and love and God in ways we can’t even imagine! Thank You Lord, for the treasure You have given us in Elizabeth. We are blessed!
About the author: Shelly Lichty has been married to the love of her life, Joe, for twelve years.  She is a homeschooling, tea drinking, card playing, girlfriend loving, mom of six children.  The oldest five are boys-Lawrence, Michael, James, Philip, and Andrew-who is in Heaven and their youngest is sweet Elizabeth.

Sunday, October 14, 2012

Breathe Writer's Conference

0 What are your thoughts?
This weekend I attended Breathe Christian Writer's Conference. It was awesome!

A couple of years ago I met Shelly Beach. (If you have not read any of her books, I highly recommend you do so. Her debut fiction novel Hallie's Heart was amazing! She won the Christy Award for this novel.) Shelly puts on a couple of writer's conferences and I had only attended the one in Iowa. Now I made it to Grand Rapids, Michigan and I am so glad I made the effort to drive the many hours to get there. If you are a writer, I highly recommend Breathe! Shelly has been like a writing "mentor" to me and her encouragement has made all the difference as I pursue writing.

I made lots of great connections and met with some people. I now have some projects to work on and hopefully I will have some exciting news to share with you all in the next couple of months.

I will be working on this blog soon because I have some great posts to share with you, as well as sone great questions to answer about Down syndrome.

On the mean time, stop by my writer blog and consider joining the writing prompt! This week we are talking about: If I knew then what I know now.

Also, did you know I am on facebook and twitter? If you are too, and I am not following you, let me know, I would love to connect beyond this blog!

I won't leave you without a picture, here is a little preciousness to lure you to the writing prompt blog post.

Friday, October 12, 2012

A race to educate about Down syndrome

4 What are your thoughts?
I am linking up with Gypsy Mama for 5 minute Friday. Where you write for 5 minutes straight with no edits, no over thinking. (And really, right now this is how I roll, because I have more to do than I have hours in a day! I can swing 5 minutes right? You should join too!)

Theme: Race

During the month of October many bloggers in the Down syndrome community have agreed to write every day to bring awareness. While I did not make that commitment, I have been trying to keep up on their stories. Just yesterday I asked these bloggers  a question: “How did your doctor delivered the news that your baby had Down syndrome?” I was shocked by the responses. I knew this happened, but the fact that the overwhelming majority of medical professionals are so uneducated (gas! Yes, I did say uneducated doctors) is just baffling!

We have a long way to go. This is a race, and we are running this thing. Our children compel us to spread awareness and educate even medical professionals that the lives of our children have value, that they are worthy of life, and they do bring us so much joy!

It is unacceptable to be asked, “When would you like to schedule a termination” upon finding out your baby has Down syndrome. It is offensive to be offered to place your child for adoption when he or she is first born, before giving the mother a child to deal with the diagnosis.

And so I run this race, this marathon of life with my daughter with Down syndrome. We need to educate people, we need to show the world that her life has great value. It is precious!  Her life gives me passion and inspires me to go on and challenge the world, even the smart doctors out there that seem to know so little about the meaning of life, of what it means to love and to be loved unconditionally, and who need to learn that a lower IQ is not a bad thing, but rather different. They need to understand that our children are contributing members to society. If it wasn’t for them, where would we learn about love, compassion, mercy, forgiveness, and joy?

All life is precious. 

An extra chromosome just means there is an extra measure of love.

Tuesday, October 9, 2012

I did not give up on blogging!

0 What are your thoughts?
I apologize for my sporadic posting. The girls were sick all last week and today we finally had healthy kids!

I would love for you to visit my writer blog as I am sharing the story of finding out Nichole had Down syndrome. I have shared it here before, but if you are new, I would love to have you stop by and read my very personal posts about that time. The first post: The road less traveled (<---link)

I have some great guest posts for you. If you blog about Down syndrome, I would love to share some of your posts too!

But I won't leave you empty handed (can you be empty handed when you are reading a blog?)

Our sweet rascal is addicted to watching shows. I mean, her addiction is just as bad as mine when it comes to social media. Ellie got us on a new path, as she shared her feelings about Nichole and her relationship, and all the things she wishes they did together. So we are screen free most of the day. Oh she has cried when we say "no." Still, she moves on and plays with her sisters, or with her toys. This is going to be good, really good.

Sometimes, as a parent of kids with special needs, you realize you do what is easy, but not necessarily the best. We have always worked with Nichole, but many times we let her win...because it is easy. We are all in this together, and even after a day, we are loving the results.

Because it also means that I am spending more time with the girls, and the computer really needs to be put away.

Thanks for stopping by.

Friday, October 5, 2012

Do Kids With Down Syndrome Look the Same?

2 What are your thoughts?
It is a common myth that kids and people with Down syndrome all look the same. While there are some characteristic physical features that set them apart, kids (and adults) with Down syndrome are individuals, and they resemble their family of origin more than one another.

My friend Shelley adopted these kids (yes, all 5 of them!) They come from different countries, and they are not biologically related to one another. I don't have to tell you that, because all you have to do is look at their picture to realize how different they are form each other. So do kids with Down syndrome look the same? Obviously, they do not!

Look at them individually and you can tell each of them has Down syndrome, but put them together, and their differences jump out. They look nothing alike, even if you can tell they all have an extra chromosome.

Saying that people with Down syndrome all look the same is like saying that all Hispanic people look the same, all Asian people look the same, all white people look the same. Yes, there are certain traits or characteristic specific to the people group, but the differences within people groups are many.

Yes, when we are not familiar with a specific people group, we might think they all look the same. However, after a while, we begin to notice the differences. In college, I had a friend from Jamaica. Our school was primarily white, and one time he confessed to me he could not tell people apart. I said, "But they have different eye color, hair color, some are taller than others, different noses, mouths, teeth!" It was all the same to him. Yet after a while, he began to pick up on those differences. Turns out Sarah and John were not multiplied but just 2 people among the crowd.

Individuals with Down syndrome do have some physical features that set them apart. Like the almond shaped eyes with the epichaneal folds, the small bridge of the nose, maybe small ears. I wrote a post about those characteristic physical features, and that post alone drives more people to my blog than anything else I have written! Click here to read that post.

Nonetheless, even within the similarities, there are vast differences among individuals with Down syndrome.

And if you want to learn more about Shelley's family, visit her blog at www.only1mom.com

And remember, it is Down syndrome awareness month. Visit my writer blog and follow along as I share my personal story there.

Tuesday, October 2, 2012

Down syndrome {on her 5th birthday}

1 What are your thoughts?
It seems unbelievable that five years ago Down syndrome entered our world when Nichole was born. That day replays in my mind every year on her birthday, fresh as if it has been not too long ago. It is no cliche, but rather a truth when people say, "kids grow up too quick" and "time goes by so fast." I was so scared.

If only I could redo that day, when I saw my baby come out of m, her back side displaying her thick neck confirming that she in fact had Down syndrome. As if in slow motion, I saw her naked back side coming to me, ready to rest on my chest. Down syndrome about to be handed to me, not my baby, but a condition. I wish I knew then what I know now.

This little girl has come to steal my heart. She has given me purpose, passion, and direction. She changed my life. This child of God entrusted to us is a gift. Yes, there is something about Nichole, something that touches my heart and spirit in ways nobody else can.

Her celebration of life touches my heart and makes me wish I celebrated with the same gusto she does. I wish I could feel the joy she feels, and I wish I could love unconditionally the way she does.

Nichole spent her birthday sick. And although she had a rough day, being sick, with a fever, and congested sinuses (not to mention the worse attendee at her own party). She still managed to expand my heart, and make me fall in love even more.

As we had lunch together she announced, "I help you" and she stirred the eggs. She also told me several times, while pointing at her head, "I sick." Because she loves the attention of her dismay.

She is my angel, and she holds my heart. I am who I am today in a large part because of her. her influence is making a mark, and her contribution to her mom, her family, and those that know her is already significant. This little girl is in the business of changing lives, and I have the honor to be her mother.

I live you rascal, with every ounce of my being!

Monday, October 1, 2012

Cerebral Palsy and Independence {and a CP Connection}

4 What are your thoughts?

This week for the first time since Nina has been going to school, I watched her go inside the building all by herself. I stayed outside, with the rest of the parents and walked back to my car. For two years I have taken Nina straight to her class, helped her out to get ready for the day. Today, however, marked the day when she is on her own.

I was not sure she could do it. She is poky, and she gets easily distracted. Not to mention that opening her locker, taking her coat of, getting her folder and books out of her backpack, and closing the locker once more are challenging to do when you lack strength and balance.

"I don't think she is ready" I said to her teach a week ago.

She smiled at me, looked me straight in the eye and said, "I want her to try. She can do this."

I looked right back at her, believing what she was saying. I even gave her hug.

"I just worry." I added.

"It's okay, you are her mom, you are supposed to worry, but she will be fine, I will be here to help if she needs me."

And once again I am incredibly thankful for the teachers that believe in my children just as much as I do. And for the teachers that remind me, and help me believe when I lose focus on my children's incredible potential.

Nina might have cerebral palsy, but she will be independent. She needs to be independent, she needs to believe in herself. And what is even more important, she needs to know that we believe in her too. So much so, that mom waves goodbye outside the school, even when every ounce of her body begs to go inside and take care of her little girl.


It is time to link up to the CP connection!

1. Link your specific post.

2. Link back here! People find your blog when you join in the connection. make sure that those reading your post can find the posts from all the other people that have linked up. The only way to do that, is to link back! We are all connected right here! You can link with text or the graphic below.

3. Visit other blogs and leave a comment.

Thanks for linking up!



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