So Close {a guest post}

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.

But.

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.

But.

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.

But.

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

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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!

It's Only Hard Sometimes {a guest post}

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? 

Absolutely. 

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.  

 

 

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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.

 

Down syndrome and the brain

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.

A message from a sibling {a guest vlog}

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

A Treasure that Brings Joy {a guest post}

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!
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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.

A race to educate about Down syndrome

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.

Down syndrome awareness month, let's get this party started!

October is Down syndrome awareness month. I will not be posting every day, but I do have great plans to share some great stories with you from guest bloggers, as well as answering some good questions you sent my way. Of course I will be sharing some extra cute pictures with you of the rascal.

People with Down syndrome are not accomplishing great things. They go to college, hold steady jobs, marry, and live independently. The sky is their limit!

To start things off, I am sharing this great picture of Nichole, because really, the sky is her limit!

Letter to parents: My kid has cerebral palsy

This morning, Andy and I visited the first graders and talked about cerebral palsy. If you have been reading here, you know that I overheard a little girl talking about Nina, "She was born that way." I talked to her teacher and asked if we could come to class and talk to the kids, after all, it is only natural that they begin to notice differences.

Last Friday, I sent a letter to parents introducing my daughter with Down syndrome. I got a great response from that, so we planned on doing a little presentation on cerebral palsy and also sending a letter to parents talking about Nina and her CP.

Before sharing the letter, I want to thank you all for the thoughtful comments you leave here, and for helping me out. I love your ideas. Milena, thank you! Your idea with the apples was perfect!

Hello 1^st grade parents,

Today we had the pleasure to come and spend some time with all the kids in first grade. Two of our daughters are in first grade too. Our daughter Nina has cerebral palsy, and this is the reason that brought us to the class. As Nina’s parents, we are thankful that your children have accepted Nina and embraced her as one of their peers. It is a joy to see children understand that a person is a person, a friend is a friend, and disability is only a small part of who they are. Cerebral palsy is not what defines Nina. Your kids get it, we are so proud of them! 

Nonetheless, first grade kids begin to notice differences and ask questions, it is a natural part of development. Today we spent some time talking about differences, disability, and specifically: cerebral palsy. 

We began our time reading the book, “Rolling Along: The Story of Taylor and His Wheelchair ,” by Jamee Riggio Heelan. Taylor has cerebral palsy too, and he talks about his braces, his walker, his stretches, and the independence he gained when he got his wheelchair. Although Nina only gets to use her wheelchair on long trips, we brought it along for the kids to see and we let a couple of the kids roll it back and forth to demonstrate.

We all practiced making our muscles “jump.” When muscles jump they get really tight, and it is hard to move! Nina had a spinal surgery called a rhizotomy, where the doctor cut half of her nerve roots. Now her muscles don’t jump so much and that is the reason Nina can walk independently! It is amazing what doctors can do to help tight muscles.

To help us understand even better, we spent some time with apples. Yes, with apples! There are red apples, stripped apples, yellow apples, and green apples. They look so different, but they are all…apples! Not only are apples different but you can also make so many different things from apples. You can drink apple juice, or apple soda. You can eat applesauce, apple rings, apple chips, or yummy apple pie! These are all so different too! You cannot drink apple pie, but you can drink apple juice. You cannot eat apple soda, but you can eat applesauce! Apples are amazing, but people are even more amazing!

Having cerebral palsy means that sometimes your muscles jump and get tight. Some things are quite a bit harder, like talking, walking, running, and even standing. But  we are ALL different. We all have different hair color, eye color, skin color, some of us are short, and some of us are tall. And these differences are what make us all special and unique. Like we told the kids, “There is only one you!”

If you have any questions, don’t hesitate to pull us to the side or contact us, ellen@ellenstumbo.com. We love to talk to other parents about special needs. Before we had children with disabilities, we knew little about what it was like to raise a child with special needs, and we wish someone had been available for us to ask questions. We are very open, and love to share about our experience.

About the book I read to the kids:

I just recently purchased Rolling Along: The Story of Taylor and His Wheelchair , and I loved it! It does a great job at explaining to kids what cerebral palsy is and how it affects the body. It also does a great job pointing out that Taylor is more alike his twin brother - who does not have CP - than he is different. And this book does an outstanding job at explaining how wheelchair can be so freeing! For any parent struggling to whether to get a wheelchair or an adaptive stroller, you need to read this book!


(The link for the book is an affiliate link. I am not sharing the book only because of that, this is really the best book on CP I have read and I absolutely LOVE it. Great resource, and I want to share great resources with you too! Still, it felt right to let you know)

She was born that way

This morning, as Ellie, Nina and I walked to school, I saw a group of second-grade girls gathered around, talking, and looking at Nina. As we approached the group, I overheard one say, "She was born that way."

I was not sure how to respond. I was not offended, it didn't bother me. At that age, kids are learning about their world, and what makes us all different. And yes, Nina was born this way. There is nothing about her Cerebral palsy she can change or make different. Yes, she was born this way.

Last Friday, I sent a letter to all the parents that have kids in Nichole's class talking about her Down syndrome. Last year, I even went to her school on Down syndrome day and gave a school wide presentation about Down syndrome. I also sent a letter home with all the students.

I had already talked to Nina's teacher about coming to her class, and reading a book to her classmates about Cerebral Palsy. This is the time I am planning on sending our "introduction" letter. But the experience form this morning is making me think I need to go to all the classrooms and talk about disability, and Cerebral Palsy. Because yes, Nina, and Nichole, were born this way.

I think you should talk about...

Down syndrome awareness month is just around the corner. October will be here before we know it! As I begin to plan and prepare, I was hoping to get some feedback from you!

Do you have any questions specific to Down syndrome? I would love to hear those?

Any questions about Nichole? Her development? What her days look like? I would love to answer those questions.

Is there something you think I should cover in regards to what it is like for us to have a child with down syndrome?

And lastly, if you do have a child with Down syndrome, I would love to have you guest post!

Thank you! I always appreciate all the input and ideas I get from you.

Down Syndrome Awareness Month, Let's Get This Party Started!

October is Down syndrome awareness month. I am not blogging every day this month, but I have some really exciting stories to share with you from guest bloggers, as well as some great posts inspired by your comments or questions.

People with Down syndrome are now able to do so much. Attend college, live independently, marry, hold steady jobs.

So to get this party started, I am sharing one of my favorite pictures of Nichole. because truly the sky is her limit!

And stay tuned for some great posts!

Adaptive Swim Class

“I qui oh the way!”

At our first adaptive swim-class, Nichole repeats the line from one of her favorite Barbie movies, “I am the queen of the waves!”

Her speech is poor and she has a long way to go. But after a couple of laps around the pool, an older boy approaches us with a loud, “Oh, oh, oh!” All of a sudden, I feel grateful for Nichole’s speech and the fact that she can communicate with us. Most likely, she will speak fluently by the time she is the boy’s age. I feel myself tense as I do not know how to interact with the boy, so I ask him, “Can you sign and show me what you are saying?” But he responds with more “oh, oh, oh!”

When we first walked into the adaptive swim-class, I instantly felt overwhelmed by the different special needs swimming in the water. I held Nichole close to me and thought, we don’t belong here. My first instinct was to turn around. I felt scared, taken out of my comfort zone, yet surprised by my reaction. Don’t I have two children with special needs?  I can do this, I reminded myself, these are my people.

“Oh, oh, oh!” The boy continues. His mother comes over and explains he is singing us a song. As I swim away with Nichole, the woman begins to sing along with her son, he is delighted, claps his hands and hugs his mother. She smiles at him from a deep place so full of love that it is hard not to feel moved by the interaction. I  realize I have much to learn about disability.

I like Down syndrome. Down syndrome has changed me, it is familiar. Nichole and I swim in the pool, she is the queen of the waves, and I am a student, learning what it means to really embrace disabilities. Not only those that I am familiar with, but all of them. I am learning to look at the person, not the disability.

I come home and tell my husband, “We have it really easy when it comes to special needs.” I tell him how I felt, and how much I have to learn.

For the next class, Nina is signed up for the swim class too and we have permission to bring our oldest daughter. I prepare the girls telling them about the big boy that cannot talk. As soon as we enter the pool, we hear the unmistakable, “Oh, oh, oh!” The girls are not scared the way I was, they just get in the pool and have fun. When they swim by him, they wave and say hi.

My children have a greater acceptance of disability and of people that are different.  Sure, Nina has Cerebral Palsy, she knows she is different, but she is also open to those that have more challenges than she does, she find something good and positive and praises those qualities. Nichole is too busy being the queen of the waves, but I  wonder what she will think when she realizes that other people look at her as different. As for Ellie, her sisters are her sisters, they are normal. Every individual with a disability we encounter is a person – and perhaps they have a disability – but it does not matter because everyone has talents, gifts, and even abilities.  My children know what acceptance really looks like. I will follow their lead and look past the disability to see the person.

The adaptive swim-class is a place where kids with special needs learn how to swim. Nonetheless, it is a place where a scared mom continues to learn how to swim in the world of disability, acceptance, and unconditional love.
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If you like this post, share it with your friends. And visit my writer's website where this was originally published!

Why my kids with special needs will never ride the bus

My kids with special needs will never ride the bus. The reason is quite simple, I know of too many cases where kids with special needs have been harmed or bullied while riding the school bus. Even the special education bus - the short bus - is not excempt from this. Just do a video google search and you will be appalled by what you see.

One of my kids has Down syndrome, and right now we don't have clear and fluent speech. If anything happened on the school bus, she would not be able to tell me. I am a stay at home mom, so there is no reason why I cannot transport my children to school.

And did you know that sometimes kids have to ride the bus for long periods of time? It takes me only minutes to pick up my kids, if they rode the school bus, they could be riding the bus for up to 45 minutes - depending on how many kids need to be dropped off and the route the bus takes - and I am just not a fan of that option either.

I have gotten acquainted with the bus driver and aide from my girls' school. They are really nice, and the aide seems wonderful. She often jokes with me, "When will you send Nichole in the bus?" My reply - with a smile - is "Never!" And most of the time she adds, "I don't blame you."

A teenager with Down syndrome was left in a school bus for hours. Her grandmother received a call from the school 5 hours after her granddaughter had gotten on the bus. She was then found on the bus, alone. How does that happen?

A young girl riding the bus was sexually assaulted. She was sitting only 2 rows behind the driver, who never intervened. Reviewing the tapes the attack lasted for about 20 minutes, the bus driver ignored what was happening. What the tapes revealed was disturbing.

In Florida, a high school student stood up for a special education student who was being bullied every day in the school bus. How did the school respond? They banned the girl who stood up for what was right from riding the bus!

And there are many more stories like this one. Stories where kids are tied down, blindfolded, or hit. All done to the most vulnerable kids. People abusing their power and strength. It is sickening.

So no, my kids with special needs will never ride the school bus for as long as I can transport them. I am not taking any risks.

Photo credit

Regrets of the Dying and What We Can Learn from People With Disabilities

At the end of our lives, we will all look back and evaluate our lives, what will we regret?  I recently read an on-line article titled “Top5 regrets of the dying.”

Australian nurse, Bronnie Ware, spent several years caring for patients on their last 12 weeks of life. During those last days, patients shared with her the regrets they had. Bronnie began to document her patients epiphanies in a blog called Inspiration and Chai. Her blog quickly became popular leading to her book titled “Top 5 Regrets of theDying.”

Here are Ware’s findings:

1.  I wish I'd had the courage to live a life true to myself, not the life others expected of me.
2.  I wish I hadn't worked so hard.
3.  I wish I'd had the courage to express my feelings.
4.  I wish I had stayed in touch with my friends.
5.  I wish that I had let myself be happier.

I find it interesting that we do not see, “I wish I would have made more money,” “I wish I would have been smarter,” “I wish I would have had a better job,” “I wish I would have lived alone and independently most of my life.”

The truth is, that when we look at individuals with special needs we assume they have less to contribute to society, or that the quality of their life is inferior if their IQ is lower and they work bagging groceries at a store.  However, it appears that at the end of life, those things really do not matter. If we look at every regret, we can see how we could learn to live, and to live fully, from watching people with disabilities do life.

1. People with disabilities live life to their true self. Have you ever been around people with Down syndrome? Did you feel a tangible type of joy?  Did you recognize that they are true to themselves and their hearts have room to accept all people?
2. Have you seen the man with an intellectual disability working at the local grocery store? Yes, he works hard, but do you notice the smile he offers as he places your bags back in the grocery cart? He does not live life for work, but rather works for the enjoyment of doing something for someone else and to make a little bit of money so he can pay his bills. Because he knows that life is about more than work.
3. Have you seen the adult daughter who gently places her head on her dad’s shoulder and whispers, “I live you dad.” And the love you see makes you wish you could have what they have?
4. Have you walked into a group home for adults with disabilities and marveled at the fun and the close friendships that they share? Did you wish you could participate in their spontaneous dance parties, or playing UNO, or seeing them share the frustrations of their own disabilities while their friends embrace them and offer unconditional love?
5. You won’t see only happiness when you are surrounded by people with disabilities, often times, you will see joy.

I have teachers in my own home, 2 little girls who teach me and show me what life is all about. Every day, every single day I see my daughter with Down syndrome enjoy life to the fullest, or my daughter with Cerebral Palsy who continues to improve her steps and announces she is going to practice and some day, she will be able to jump.

The joys and the fullness of life we live with thanks to them is a gift. People talk about children like my own as if they were a burden, but what burden is there when they show us what life is  really all about? When we can learn about love, joy, peace and kindness from them.

People with intellectual disabilities have much to offer to society. I am convinced that if we all looked at them as human beings, as contributing members of society, if we took to heart the way they show us to live, the regrets on our last days would be vastly different.

Sources: 

Guardian.co.uk 

Bronnie Ware official site

Inspiration and Chai

Photo Credit

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Determined to Dance

There are times when I watch something like this and feel overwhelmingly grateful to be a part of the Down syndrome community. It is impossible for me to look at a group of people that sport that extra chromosome and not feel moved by the depth of love and joy that is communicated in their expressions and interactions. My heart feels full and I feel God whisper, "These are the shades of colors I promised you."

Oh sure I am a writer, and I hope to "make it" some day; but do you want to know what my dream job would be?

After all, I am also a dancer...

Determined to Dance is a documentary I will be excited to watch,

A portrait of young dancers with Down syndrome and their families. The video also includes rehearsal footage and actual performances.

Portrait-in-motion of a troupe of young adult dancers with Down syndrome. Led by Kenny,  irrepressible Elvis fan, fanatical storm-chaser/weatherman, wannabe Romeo, and an awesome, dedicated dancer, they prepare tougher pieces for larger audiences, but the number that always has fans on their feet in tears? "There's a place for us...somewhere."

Brokenness Became My Normal: A guest post

I was born “broken”.

I came into the world on March 9, 1979, weighing just over two pounds. My mother had developed preeclampsia and I arrived several weeks earlier than anticipated; I was so tiny that my father could fit his wedding band around my arm. Among the medical problems that I endured, I developed hydrocephalus (or the buildup of excess spinal fluid around the brain). Almost immediately I was transported to Columbia Presbyterian Hospital in New York because they had a pediatric neurological department that could treat me. It was there that I underwent surgery to have a shunt implanted in order to re-route the wayward spinal fluid and relieve the pressure on my brain.

Interestingly enough, the number one song on the Billboard charts that week was “I Will Survive” by Gloria Gaynor. I see this not as a coincidence but rather a direct sign from God, even though by the time I discovered this fact I had long since grown up. But it didn’t surprise me in the least, because despite everything I endured as a result of my premature birth, I ultimately did survive. I learned to crawl, walk, and run. I attended school. I made friends, and enjoyed birthday parties. I learned to drive, graduated high school, and entered the workforce. I developed a passion for writing and photography, and learned that I see the world differently than others.

Different became my normal – and it is definitely good. Throughout my childhood and my life, my parents simply accepted my brokenness as our normal. Hospitals, neurologists, brain surgeries, and CAT scans were our normal. Dealing with annoying doctors and learning how to know when my shunt was malfunctioning was our normal. And through it all, my parents loved me and always took care of me.

One very touching example of how my parents truly embraced my brokenness right from the very beginning is a story my father has told me many times over the years. As he tells it, I was in the process of being put into the ambulance to be transported to Columbia Presbyterian in New York when he was met in the hallway by both of my grandmothers. They had not yet seen me and didn’t know all of the details surrounding my arrival, and were eager for details. As my father was walking with them, he very matter-of-factly announces, “They’re putting Sabrina in the ambulance now to take her to Columbia Presbyterian.” Several seconds pass by before he realizes that he’s still walking but that my grandmothers are no longer walking beside him. He turns around to see them standing several feet away, with looks of confusion on their faces.

“Sabrina?” they ask him. “Who is that?”

“That’s what we named the baby,” my father answers them. “Her name is Sabrina.”

I have to admit that I love hearing that story because it shows me that despite all of the fear, uncertainty, and complications surrounding my birth, my parents still took the time to choose a name for me, and embraced me for the person that I was – brokenness and everything. 

It’s now been more than twenty years since my last shunt surgery, and although the potential for a problem is never far from my mind, I don’t let it scare me. Instead, I’ve embraced my brokenness and the beauty found in it and have begun to seriously consider writing a book about my experiences. After all, God gave me this life and my passion for writing, and now I want to share both with the world.

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Sabrina Steyling is a writer and blogger from New Jersey who also enjoys reading, photography, and scrapbooking in her spare time. Her articles and essays have appeared in several local publications and on Patch.com. Connect with Sabrina on Facebook and Twitter, and also check out her website on Wordpress.