Les Miserables...and why I love movies and musicals

Two nights ago my husband, my sister and I watched Les Miserables. All three of us were giddy in anticipation of an incredible performance.  I exected to be moved, to be inspired, and cry. I was sure I would go through a box of tissues and I was actually looking forward to that experience of the show.

I love the story of Les Mis. It is truly the story of grace, forgiveness, and a changed life. Have you ever listened to the musical? Wow! The lyrics, performances, voices, and orchestra are INCREDIBLE. Put those two together and you know you are in for a treat, right?

I speak music. Now, I am not a singer, I am a dancer, but when I hear music, and singing, my soul connects in a powerful way. This is one of the reasons I love musicals so much.

And let's not forget the power of story (especially in cinematography when you see it unfolding before your eyes). Some stories are so powerful that they change you, they touch you, and they inspire you.

As the end credits rolled out, I sat motionless in my seat. Les Miserables was a good movie, but there was something that just didn't sit well with me. It took me a while to figure it out, but I finally did. I felt cheated.

The story is complex, and there is so much to tell. However, the events happened so quickly that it was hard for me to follow (even being familiar with the story). I had no emotional investment or connection to the characters. Yes, Ann Hathaway's rendition of "I dream a dream" was as amazing as the previous show. However, before that, I did not feel emotionally drawn to her plight. Her song moved me, but her story...well, it did not. It happened so quickly.

Oh the singing was great, I do not even have anything bad to say about Russel Crowe and his singing. It just didn't...connect.

Another great performance was "Empty chairs"  and Eponine was incredible, but then again, I did not feel this great sadness or loss.

Maybe this is a good place to also point out that since this is a movie, I did not expect it to be all singing. No dialogue, no talking, all singing. I don't know, singing, "Who is out there" takes away from how powerful it would be to say, "Who is out there" if you were terrified to find someone that wants to kill you, no matter how terrified you look, if you sing it rather than say it, it is not the same (in my humble opinion). So the "we sing everything" approach actually took away from my enjoyment of the movie, and it took away from the powerful songs, because it all became singing (and I really do love singing).

So maybe Les Mis, the movie, was not my cup of tea. Maybe this is just a style that does not "speak" to me. I really, really wanted to love it, but I felt like the previous did a lot more for me than the actual show. I did come home and found some Broadway performances to "redeem" the experience for me, and yes, I do love Les Miserables, absolutely love the musical too...just not this particular movie version.

What about you. Did you love it? Was it everything you expected it to be? Were you disappointed?

My Brokenness and Prayerlessness

I live in a world plagued with evil and suffering.  Broken lives walk around me and I look past their hurting hearts. This is a lost world, a fallen world in need of hope, in need of light.

Last Friday I had to recognize not only the darkness, but my own prayerlessness.

Because this is what has been so heavy in my heart.

It is about the fact that I forgot how to pray. I say I believe in the power of prayer, yet the time I spend in prayer is insignificant. How is it that I can access the Almighty God, yet instead I choose to spend my time browsing through Facebook statuses, or researching the best parenting sites? 

And this is when once more I am confronted by my own brokenness and my own need for God… my Redeemer, my Comforter, my Hope.

Would I be different if I devoted time before the throne of God each day? Absolutely.

Would our church see fruit if I prayed as fervently about our ministry as I complain about how difficult it is? Without a doubt.

Would my girls be more alert to the doings of God in their lives if I was more aware of them myself as I recognize His voice throughout my day? Yes.

A tragedy brings us to our knees, it makes us realize how far we have moved away from the Lord, and how we have allowed darkness to cover the light we are supposed to give and spread with this world.

But darkness cannot destroy light, not when Jesus has already won the battle for us. And sometimes, it takes the precious and innocent blood of children to make us wake up and see the brokenness inside us, and how desperately we need God to be ever present in our lives, in our hearts, in our words and in our actions.

Because He has come so that we have life, and have it to the full. And so I am ready, ready to embrace this full life He offers, and to do so, I need to spend time with Him. I need to hear His voice.

So I will fall on my knees, spread out my arms and ask God to mend the broken pieces of my heart. I will ask Him to make me whole. I will beg Him to move!

The same God who parted the Sea, the one who made the blind man see and the lame man walk…He can move today too. So move Lord Jesus, show us your power, your Glory, and your unending Love.

We need to pray for our schools (response to tragedy in Connecticut)

This post first appeared on ellenstumbo.com

It seems ironic I posted my first “confessions” the day before the tragic shooting at the Elementary School in Connecticut. I did not hear about it until after school…thankfully.

There was a flood of compassion and empathy for the victims mixed with fear over our children’s lives as we send them off to school. Are our children safe? Homeschoolers reminded us this is one of the reasons they homeschool.

When tragedy hits our most vulnerable (our children), we face the raw reality of the fallen world we live in. Evil exists, and precious lives suffer under the actions of an enemy that seeks to tear down and destroy.

This is a time where it seems okay to talk about prayer, and God, and His love. It saddens me that it is not until crisis and terror strikes that our Nation recognizes the need we have for God to step in and bring light into darkness.

I will not play the blame game. I will not point fingers and talk about who’s fault this is, or what should have been done different. No.

Instead, I will take a close look at me and see if I have failed to do my part. Because when I honestly look at my heart and the role I play, I have to admit that I have failed. If this had happened at my daughter’s school, I would have to painfully admit I have not done my part.

I send my kids to school and I pray for their safety, “Lord please keep them safe.” Yet today I am confronted by this little prayer, because the magnitude of the events that transpired yesterday show me that I do not take my prayer role very seriously.

So I speak to other God fearing moms (and dads):

Where are we? Why are we not regularly getting together and coming before the Lord asking him, begging Him to MOVE in our schools? Why are we not concerned about the teachers, the staff, the broken families and broken hearts that gather in our public school buildings? Are we burdened by the shattered lives that are so close to us and to our children? Are we doing something? Is it really just enough to ask the Lord, “Keep my child safe” and forget that there are many lives that could be touched by God is we only prayed?

If I take my role as a mother, as a child of God, and as a messenger of His love seriously, then I need to wake up and go!

Let’s wake up church, let’s get our hands dirty as we work to bring the love and hope of Christ to this world. It’s time we bring light back to our schools through us! We cannot blame the government for kicking God out of the schools, we have the Holy Spirit within us, and it’s time to pray!

Lord, may you comfort the broken hearts that grieve because of the wickedness of this fallen world. May we all wake up and listen to your call. May we not point fingers and blame when we have not lived unblemished lives ourselves. May we come together in our grief and recognize that we need you, we desperately need you!

Ten Things I Want My Kids to Remeber

This post first appeared on ellenstumbo.com

Like running water, time slips between my fingers in a steady stream. These are precious drops of time I wish I could hold on to longer, but they are gone too soon. As I seek to make memories with my children, I think about what is important, and what really matters. There are lessons, memories, moments I want my kids to remember.

I love you. 

Not because of what you can or cannot do, but simply because you are.

I delight in you. 

Nothing brings me more joy than to be your mom.

I know you can accomplish anything you want. 

I see you try hard to learn and master new skills. I know with your determination you can accomplish anything you want.

I will always be your number one fan. 

It doesn’t matter what you do or where life takes you, I will always be cheering you on, always believing in you.

It is okay to make mistakes, my love will never change. 

I know there might be times where you mess up, my love will never change, I will always be available for you.

When you are struggling in life, I am here for you. 

Sometimes we struggle to make sense of life, it is just not always easy. No matter what it is, I am here for you.

You have taught me the most precious lessons in life. 

I thought I would have so much to teach you (and I have taught you many things), but you have taught me so much more!

I am proud of you. 

So incredibly proud.

It is an honor to be your mom. 

How did I get so lucky to have you in my life? It is an honor and a pleasure to be your mom.

I would give my life for you. 

Anything, I would do anything for you. And I would give my life for you, because I love you, and because there is no sacrifice I wouldn’t give for you.

18 Months Post-Rhizotomy {and a CP connection}

Last week, Nina and I made a trip to Mayo Clinic for her 18 month post-rhizotomy follow up. I cannot believe that it has been that long!

Her therapists and doctors were all pleased with Nina's progress. It is so fun when you see the people that have followed her for almost 3 years be as excited as you are about her progress. Nina is walking independently, and she walked up and down halls and across rooms (over and over) for everyone to see.

Here is the gist of things we discussed:

• Nina uses her walker for balance (she still looses her balance easily). The thing is, the walker is an overkill. She uses it to, "do some tricks!" per her own words to all her therapists and doctors. She is even known to give "rides" to her friends. Her gait is terrible in the walker because she uses it for speed.
• We are going to try crutches for balance help. Actually, one crutch. Her left side is very strong, and she really only needs support with her right side. We need to start practicing one crutch.
• Nina's right knee comes in (faces her left leg) every time she walks, making her right foot come in as well. As she gains balance and confidence, she is tripping on her own knee and/or foot.
• Nina has hip dysplasia, a bone malformation on her right leg femur, and still some spasticity. 
• Veredict: Nina is having surgery this summer. Okay, surgeries. Yes, 4 of them! The doctor will fix her hips, break the bone and rearrange it, do muscle lengthening in her hamstrings and PERCS on her Achilles tendons.

Nina's left side is really amazing. When you remind her to put "heel first" when taking a step, her left side is almost...normal. Remember the "magic juice" I talked about last month for the CP connection? Yeah, we really do believe this has a lot to do with her left side improving.

And speaking of the CP connection. Do you blog about cerebral palsy? Link-up! And don't forget to visit the person that linked up before you and leave a thoughtful comment!

Oh, and PLEASE link back to this post! We ALL want to be connected, it is the CP connection after all.You can link with text or copy the CP connection code from the right sidebar.

Christmas Flashmob Choir

This is one flashmob choir I wish I would have experienced first hand. In the midst of our materialistic culture, and malls full of people buying stuff, we are reminded of why this season is important...for all of us.

Enojy!

Trying to stay afloat!

Wow! I look at this blog and realize how much I have neglected it! I have been doing okay with guest posts, but even some weeks I am really dropping the ball.

The truth is, I have too much going on!

Last summer I began to really push my writing as a freelancer, and I have had some pretty amazing jobs. One is on-going and I absolutely love writing about the things I went to school for (Psychology, and Christian Counseling). But if I have limited time, the job takes precedence over the blog. I have also been doing editing and it has been fun! I met a pretty remarkable woman that had a sister with down syndrome and her short memoir is fascinating! Editing a book takes up a lot of time!

I am also on the board for the International Down Syndrome Coalition for Life. The IDSC is doing great things in the Down syndrome community. It is an honor to be a part of this group. I have been dropping the ball here too, but thankfully our awesome leaders are understanding and they have not fired me yet. Thank you!

I attended a Writer's conference in October and an editor said she would take a look at my book proposal. I have been diligently working on it, and was going to send it in next week. Then I read a post by another agent who suggested to wait for those book proposals until the new year, since this is a really busy time for them. They have lots of projects to get caught up with and they need to finish things up by the end of the year. (The book is about emotions in adoption for the parents. Parents also go through a lot during adoption, it's tough, hard, and also wonderful. How does one handle the different emotions of adoption? I know of a woman that was diagnosed with PTSD after adoption. This is real, it's happening, and we need to start talking honestly about those feelings).

I am also teaching Zumba. I LOVE it! Just got hired by the YMCA and I will also be teaching dance again. If you have been reading my blog for a while, you know it has been a dream of mine to teach an adaptive dance class...I am getting closer to that dream!

In pursuing my writing professionally, I am working hard on my Writer website/blog. Please stop by if you have not had a chance to do so. When I only have a chance to do one blog post, that is where it is going.

I am still around, just trying to get organized and trying to juggle too many projects at once. Not to mention I have 3 little girls that need time and attention!

On the meantime, I would love to connect with you via facebook! I do stop by there everyday and share thoughts, photos, posts, and ask for recipes sometimes :)

Reading this over, it almost sounds like an excuse not to blog, but I have been feeling pretty overwhelmed lately, and that is the truth. Sometimes at night, I just want to sit with my husband and watch a show, or read a book.

But I am still here, and I will try to update as much as I can. Nina is doing amazing since taking the magic juice, we have seem improvement in a lot of areas, especially cognitive. Like not just little things, but WOW!

The rascal is also on a roll, and there is much to share about her development. She has Down syndrome and she is certainly not a typical child, but goodness is she amazing and is she a star! Speech is also coming along, and some days she even likes me almost as much as her daddy (some days).

Ellie wants to be an author. I realize how much she looks up to me, and I am humbled and reminded that I need to be the woman I want her to be. Oh the responsibility! Oh the pleasure and joy to be her mom!

And Andy, well, he is just amazing! Our 10th anniversary is coming up and I am madly in love with this man. And I swear he just gets better looking with time.

That's it! I thought this would be a short update, but I kept writing. So there you go. Life so far.

And would you pray the Loraines move to our town to do ministry with us? Thanks.

Down Syndrome and Therapy {a guest post by an OT}

Children with Down syndrome often receive occupational therapy to address motor delays. Today I’d like to share some physical characteristics of Down syndrome that may affect your child’s motor development and then I’ll share some easy activities you can do with your child with Down syndrome to promote development of motor skills.

Physical characteristics of Down syndrome that can affect motor development:

• Hypotonia. This is a fancy medical term for low muscle tone. Babies with Down syndrome often feel very floppy when you hold them. This is due to the low muscle tone. The best way to imagine what it is like to have low muscle tone is to think of when you are exhausted and how much energy it takes to get your muscles to move. That is what it’s like all the time to have low muscle tone. It is good to remember that low muscle tone affects every muscle from head to toe.
• A single transverse palmar crease (also known as the simian crease). Despite some beliefs that this is a primary physical characteristic of Down syndrome, only about half of children with Down syndrome have the single palmar crease. This may affect your child’s hand dexterity, but often the single palmar crease does not have a significant impact on hand skills.
• Short fingers, especially 5th finger(pinky finger), which may appear slightly bent. Smaller fingers and hands may cause your child to have difficulty with tasks that require fine motor precision and dexterity, such as buttoning pants.

Activities for babies:

• Tummy time. All babies need tummy time, but this will be especially important for your baby with Down syndrome. Lots of tummy time will help increase your babies strength and help your baby overcome the low muscle tone associated with Down syndrome.
• To develop fine motor skills, encourage your baby to grasp onto toys such as rattle and rings. Since your baby may have smaller hands, make sure the toy is thin enough for your baby to get his or her hand around it.

Activities for toddlers:

• Drink through a straw. Since low muscle tone affects every muscle from head to toe, drinking through a straw will help strengthen the muscles of your child’s mouth and face.
• Further develop your child’s fine motor skills with simple, age-appropriate toys, such as duplo blocks, playdough, and wooden knob puzzles.
• Walk, walk, walk! Toddlers with Down syndrome typically learn to walk around two years of age. The best way to promote their gross motor development is to let them practice their new skill of walking.

Activities for preschoolers:

• This is a good age to start introducing oral motor games to further strengthen your child’s facial muscles. A simple oral motor game you can play with your child is to race cotton balls across the table by blowing through straws.
• Develop early self-help skills by encouraging your child to put her shoes on and teach her how to manage the Velcro on her shoes. This promotes independence and fine motor skills at the same time!
• Preschool is when children start developing pre-writing skills. Use broken crayon pieces to provide your child with small crayons for small hands. Encourage your child to imitate lines and circles. You and your child can also use your fingers to draw lines and circles in shaving cream, paint, or sand.
• As your child’s gross motor skills develop, you can introduce more challenging activities requiring balance. Encourage balance by standing on one foot to kick a ball. Or place a two by four piece of wood on the floor to create a low balance beam.
• To increase your preschooler’s overall strength, wheelbarrow walk with your child or have your child do animal walks (e.g. crab walk, bear walk).

Activities for school age children:

• This is the age in which children begin to develop more independence in self-help skills. For your child with Down syndrome this will probably take a lot of practice and patience! Skills that require fine motor dexterity, like zipping a jacket, buttoning pants and tying shoes will require lots of repetition. It’s best to work on one new self-help skill at a time.
• Developing scissor skills can require extra practice in children with Down syndrome due to their shorter fingers. Practice the open/close motion required for cutting by squeezing tongs and spray bottles. Promote the use of both hands together stringing beads or doing crafts that require tearing paper into small pieces.
• As your child moves from pre-writing to writing letters and numbers, keep in mind pencil grip. Children with Down syndrome have shorter fingers, which can make it challenging to hold a pencil appropriately. To promote the use of a tripod grasp, encourage your child to hold a small toy or eraser against his palm with his pinky and ring fingers, while he holds onto his pencil with the remaining three fingers. Click here to see what that looks like.
• As your child’s balance improves, keep introducing more challenging gross motor activities. Encourage your child to alternate feet when walking up the stairs or start riding a bike with training wheels. Get that two by four balance beam back out and practice jumping off of it!

The key to developing motor skills in children with Down syndrome is the same as in all children: go at your child’s pace and choose activities that are developmentally appropriate. I hope this list helps provide a guideline for promoting motor skills in your child with Down syndrome!


Recommended Reading:
Fine Motor Skills for Children With Down Syndrome by Maryanne Bruni
Gross Motor Skills in Children With Down Syndrome by Patricia Winders
Babies with Down Syndrome: A New Parents' Guide by Susan Skallerup


About the author:
Abby Brayton-Chung, MS, OTR/L is a pediatric occupational therapist with five years of experience evaluating and treating children ages birth to twenty-two, including children with Down syndrome. Her work experience includes school based practice, early intervention and feeding therapy. Abby recently moved from Southern California to New England, where she is enjoying the changing seasons. Abby currently specializes in providing occupational therapy services to students with language and learning disabilities. Abby blogs about her experiences as a pediatric occupational therapist at www.abbypediatricot.blogspot.com.


This post contains affiliate links.

Magic Juice and a CP Connection

Nina has been drinking magic juice. Okay, it is really a mineral supplement, but one mom called it the magic juice, and I guess we have seen some great progress with it.

Don;t be surprised if some of the people linking-up are also sharing about this magic juice. And no, we don't really think it is magic, but we are seeing that there are some real deficiencies in our children with CP and this is helping in many areas of development.

About two months ago a fellow mom brought up the Preemie Growth Project. She got her daughter involved in the research and she began to see some real changes. The changes were significant enough that many of us took notice and we began to research what this project was all about. The project/research is based on a mineral supplement. Specifically plant derived colloidal minerals. The science behind it is that premature babies lack the mineral foundations to brain and muscles necessary for optimal development. By providing these minerals, the brain and muscles are able to finally function at a more typical level. For kids with cerebral palsy, this can be huge.

If you want to know more, check out the website, and like I said, there are probably some blogs linked up here talking about this.

Also, here is a pretty good article about plant derived colloidal minerals.

We are taking a very conservative approach to the supplement and we are introducing this very slowly with Nina. We are only to half the recommended dose and we are seeing changes. Nina is balancing so much better, and she is bending at the waist to touch the floor and back up again. In only a couple of weeks, we have seen change, including some improvement with her school work.

Here is a video of Nina today, check out her balance just 11 days into the supplement and only half the recommended dose.

***

Join the CP Connection!

Rules:

Make sure you at least visit the person that linked up before you and leave a comment on their blog.

Link back to this post so we are ALL connected. This is kind of a big deal. Other people are finding you because this is the gathering place, so make sure you return the favor by helping others find all the awesome blogs participating in the CP connection.

You can link with text or the graphic.


<a href="http://elliestumbo.blogspot.com/search/label/CP%20connection/" style="border: none;"><img alt="Stumbo Family Story" src="http://i254.photobucket.com/albums/hh90/ellenstumbo/CP-connection.jpg" style="width: 129px; height: 129px;"/></a> LINK-UP BELOW

Adoption Rocks!

I once was lost...

But now I am found.

Adoption Rocks!

It seems amazing that Nina has been in our family for almost three years! This journey has been difficult,  oh how I have cried and how I have loved! It has been worth it, all of it. Even the really hard parts of the journey, they have all been worth it.

This little girl is a joy!

If you are considering, or have considered adoption, I have a ton of posts here about adoption, so go check them out!

If you are interested in what the journey was like during the process, we kept an adoption blog. I don't update it anymore, but I remember being in the process and wanting to know so much more about the families going through the process. What was it like? 

Adoption is an emotional journey, no doubt about it! But did I mention it is worth it?

If you read my last post, you know I have pretty strong feelings about the church and the orphan crisis. But I also know there are some real reasons why people are not able to adopt, or that keep them from making the commitment. These are not excuses, these are real, significant reasons why people don't step forward.

So I want to help you, and in turn, you can help me!

What keeps people from adopting?

What do you wish you knew about adoption?

What do you think are misconceptions about adoption?

Looking forward to hearing your thoughts, and yes, adoption rocks!

Orphan Sunday

This Sunday, November 4th, is Orphan Sunday. I am glad that there is at least one day dedicated to bring awareness of the orphan crisis within the church. However, shouldn't the church's response to the 210 million orphans expand beyond one Sunday?

Adoption should be a part of our churches. The church should respond and help families in the process of adoption, and not forget that the real hard work begins when the child comes home (not before). With the large number of churches, funding adoptions should not be an issue. And for the Christian families that live in comfort and are content with life, I often wonder, why not bring a hurting child into that wonderful family you have created (with God's help, after all HE is the one that provides for ALL our needs). I don't want this to be a "guilt" message, but there are too many indifferent Christians. Sure, we care, and we feel for the cause, but how many people actually ACT and do something about it?

If you can't adopt, then when was the last time you sent a check to a family struggling to fund their adoption? Did you think maybe you could skip the run to McDonald's, or wait for that new pair of jeans? Did you think maybe this Christmas your children didn't need several material things, but instead you could use the excess money and contribute to an adoption so that ONE child could have the gift of a FAMILY?

Your don't have to adopt, you can give...and you can pray. Is your heart burdened enough that you offer your prayers for the orphans? Are you on your knees asking God to raise up His people and rescue these children? Are you moved by the plight of the orphan? There are more than 210 million orphans in the world today, surely you can pray. Wake up church, we have a call! Yes, we are commanded to care for the orphan, are you doing your part?

Adoption is hard, really hard. It is an exhausting emotional journey and yes, at some point you might wonder if you made the wrong choice. But it does get better, and life resumes with a new normal. And then love grows, and there is joy, and there is an incredible thankfulness for this child you now call your very own. Seeing life through the eyes of a once-orphan child is a gift. It is life altering. Adoption is WORTH the sacrifice. Adoption is WORTH the trials. Adoption is WORTH the tears. Because adoption is God's heart, is it yours?

Get the word out, spread the message, act!

 
Share this post via facebook or twitter. 

This post first appeared on ellenstumbo.com

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

***

 

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.  

 

 

***

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.

Defining Moment {a guest post}

 

 

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.

 

I mean, sweaty palms, mind racing, heart palpitating, legs shaking, cold nervousness in my veins, the taste of bile in my throat.

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.

 

LOVE.

 

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.

 

  

***

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.