A Beautiful Young Lady at Pena Adobe Park | Down Syndrome Awareness Month

I had the pleasure of meeting this lovely young lady at Pena Adobe Park yesterday for a mini photo session.

She greeted me with a warm smile and a friendly handshake, but had a glint in her eye that told me that mischief might occur. 

She even offered an occasional courtesy laugh to let me feel like I'm as funny as I think I am. 😉

She was easygoing and up for any pose or location that I suggested. 

Serenity overtook her as she blew bubbles. There was a calmness that washed over her and I enjoyed watching her in this element.

This smile. She may not have expressed herself with many words during our session, but this smile about sums it up. I always feel blessed to have the privilege of photographing wonderful individuals and I try my best to capture personalities. It isn't about the posing, the perfect smile or the right location. For me, I want to look back at the photo and remember the personality that shined through during the session.

Thank you, Miss S, for a fun session. It was a pleasure meeting you and your sister. ❤

10 Things I Have Learned from Cody | Down Syndrome Awareness Month

I originally wrote this post in July 2010 when Cody was just 4 years old. I read it the other day and thought of how fitting it still is and was worth sharing again.

1. Keep trying – if you keep trying, you will eventually get the outcome you want.
2. Don’t give in to expectations – if Cody only lived up to the expectations people have of him they would never see his true potential. I love that he can prove people wrong!
3. Keep smiling – even when he was laying in a hospital bed connected to a ventilator, he never stopped smiling. Even when he is sleeping I catch him laughing and smiling while dreaming. I want his dreams. :)
4. Never hold a grudge – the boy can’t stay angry for the life of him. He can be super mad at me one minute, but as soon as I smile at him, he forgets all about his anger.
5. Be able to laugh at yourself – when he falls, he is the first to laugh. If he bumps his head, he is the first to laugh. I think being able to laugh at myself and things I do reminds me to not be serious about a lot of different things.
6. Make friends everywhere you go – Cody is like a friend magnet. Adults and kids love to talk to Cody and he is always open to chatting with them as well. Not that I’m not talkative, but it is a reminder that you can never have enough friends.
7. Don’t forget to be silly – Every day items turn into a hat or a toy. He can crack himself up for half an hour with a basket or a silly dance. I try to be silly with him and his brother as much as I can.
8. Show your love often – Cody has an endless supply of hugs, kisses and “i lub yous” to give away. Hug someone and it can make their day. :)
9. Be there for someone – If ever anyone in the house is upset or in trouble (aka the puppy or his brother), Cody is the first one by their side to comfort them or stand up for them. (He is also likes to help scold them, but that is after he has comforted them).
10. Enjoy life – Cody can turn anything he does into something fun and enjoyable. I think us adults need to do that more often!!!

October is Down Syndrome Awareness Month – 5 Things I Know Now

It has been quite awhile since I’ve written here. I need to get better at it. There is no better time to start back up than for Down Syndrome Awareness Month.

When we first found out that Cody would have Down syndrome, we knew little about Down syndrome. We were worried about the journey. Worried about his future. I was worried that I would not be the voice he needed me to be.

Now, 8 years later, I can look back at those worries and say to myself, “Woman! What was wrong with you?”

I know the feeling that a prenatal diagnosis can bring. I know the worries of “am I ready for this?” Honestly, are we ever ready for a child, typical or one with special needs? I know that all the parenting books in the world didn’t prepare me for DJ to walk at 8 months, much more climb and jump off everything in sight by 9 months!

If you or someone you know has received a prenatal diagnosis or even a birth diagnosis of Down syndrome, I am more than happy to speak with you. You are not alone. The potential for your child is far greater than what a medical book will tell you.

If I could go back to 9 years ago when we received the diagnosis, I would tell myself:

1. You WILL be that voice for him. You have it in you. I hate confrontation. I dislike arguments. When it comes to what is best for Cody, though, I will follow my mother’s intuition and fight for what is in his best interest. Cody has proven his potential time and time again. I will not be the one to stand in his way of being who he was meant to be.
2. There will be challenges, but he will bring you more joy than you can imagine. I have been through more emotions in these 8 years than I have in my 41 years of life. I have watched my baby endure heart surgery. I have watched him fight for life on a ventilator for 28 days. I have witnessed him terrified to go to school and made the choice to home school him so that he can receive a proper education. All those challenges, though, are worth every ounce of joy that that little boy brings into my life. When I’m feeling down, he is the first person to offer a hug and an “it’s okay”. His heart is in his smile.
3. Follow his lead. He knows what he is capable of. Even when you and everyone else may doubt him, he will often prove you wrong.
4. Remember every moment, even the bad ones. There will be many moments that you will want to savor. There will also be those that challenge your heart. In the future, those challenges will remind you of just how far you both have come.
5. Enjoy the journey. It isn’t about how fast you get there (whatever there may be). Just enjoy the journey. Savor every moment with him. He will grow up faster than you want him to and you know what, he will be okay.

A Couple of Cuties on a Country Side Road | Solano County Family Photography

I could not wait for this session with these 2 cuties. The last time I saw baby brother, he wasn’t even crawling yet.

These loving brothers sure delivered during their session!

Ya, I think I’m in love!

Big brother completely doted over little brother! He preferred to have his photo taken with brother instead of alone.

I LOVE this photo of them!

It was the rare photo of him without his brother. He reluctantly participated, but I’m so happy he did. OH that smile!

More love for brother!

I will leave you with this photo to start your weekend.  

5 Things About Cody | Down Syndrome Awareness Month

Down Syndrome Awareness month ends tomorrow, but that doesn’t mean we will stop building awareness. That’s a daily event! :)

The IDSC is hosting a Blog Hop with the subject of “5 things I want the world to know about my child with Down syndrome”.

There are many things I want you to know about Cody, but here are the first 5 that pop into my head:

He is creative and takes his time in the process. Artists can’t be rushed, you know.

He is hilarious! He loves to make people laugh and whether it is a knock knock joke with no punch line, a silly dance, a funny face or being goofy, he will be the one to lift your spirits and crack you up.

He is cautiously curious. He loves to explore, but is quick to let you know when he doesn’t like something. When he sees something that intrigues him, he will want to watch it and not leave it. When he sees something that scares him, he will become fearful and try to run. 

He loves and admires his brother. I am thankful that the boys get along and don’t fight often. I am sure this phase won’t last long, but I am enjoying it as much as I can. I often find them sitting side by side or holding hands while watching TV. Sure, it ends up in a playful wrestling match, but they aren’t fighting so I’ll take that. :)

The most important thing I want you to know?

He is one of the bestest things in my life! Is it because he has Down syndrome? No.

It is because he is my son. My blood. My family. If he was born without Down syndrome, I wouldn’t love him any differently. Shoot, I probably couldn’t love him (or his brother) more.

He has taught me patience, rekindled my curiosity in surroundings, showed me perseverance, and introduced me to things I never would have experienced without him in my life. For that, I am thankful!

$21 for 21 Dreams | Down Syndrome Awareness Month

When I received a call last year from the Executive Director of the IDSC, I simply thought I was signing up to volunteer to work their photo campaign.

What originally began as photo editing turned into something more. MUCH more.

I have found a new family in the IDSC and a strong sisterhood with some of the board members.

I found the organization I was so desperately searching for when we began the journey into parenting a child with Down syndrome. The organization that welcomed us with open arms and didn’t judge or feel clique-ish. An organization that I am proud to stand behind.

Now, it’s time for us to help them and I need your help!

The IDSC recently introduced the Grow With Us Campaign.

The Grow With Us Campaign has a goal to create 21 dreams for families and individuals with Down Syndrome.

We have formed a donation page for Cody. We would appreciate your consideration in donating $21.

Click on the button to donate:

With just a $21 donation, you can help the IDSC attain their 21 goals.

1. Prenatal Diagnosis Information Packet
2. Information for new parents
3. Up-to-date information for physicians
4. Outreach to schools and businesses to increase acceptance and inclusion
5. Increase adult advocacy
6. Increase international advocacy
7. IDSC Billboard Campaign
8. Scholarships for families/self-advocates to attend IDSC WDSD Meet-Ups
9. Expansion and marketing expenses for IDSC Meet-Ups
10. Costs incurred from the Wrap Up to WDSD in Memphis TN
11. IDSC literature for Step Up/Buddy Walk tables
12. Expenses for participating in national conventions
13. Marketing costs to maintain IDSC
14. Update IDSC website
15. Update computer software for IDSC photo campaign
16. Production costs of IDSC WDSD Kick-Off Video
17. Maintain monthly fees for IDSC website
18. Maintain IDSC store
19. Dues and fees to national and other organizations
20. Adoption option resources
21. Online medical resources

We hope you will consider donating to this organization!

Welcome to Holland | Down Syndrome Awareness Month

When I first found out that Cody had Down syndrome, I turned straight to the internet to learn about it and search for other families that had children with Down syndrome.

One of the first things I found was “Welcome to Holland” by Emily Perl Kingsley.

Here are my favorite excerpts from Welcome to Holland:

“It’s just a different place. It’s slower-paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around…and you begin to notice that Holland has windmills…Holland has tulips. Holland even has Rembrandts.”

“But…if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things…about Holland.”

Those are the lines that helped calmed the negative voices in my head.

Those were the words that told me that I needed to change the way I viewed the diagnosis.

They were exactly what I needed to hear.

The road we have gone down is different than I had anticipated, but it’s still flashy. It still is beautiful. It still helps me build memories that I will never forget nor want to forget.

It has gray skies, but the sun always finds its way back.

It has road blocks, detours and u-turns, but it always leads me to a path that is even better than the last.

It has people that try to ruin our trip, but for every one of “those” people there are 10 others to guide us and show us the beauty to be found.

To quote the theme song of one of my favorite shows from my childhood:

When the world never seems
to be living up to your dreams
it's time you started finding out
what everything is all about
…
You take the good, you take the bad,
you take them both and there you have
The Facts of Life, the Facts of Life.
…
You got the future in the palm of your hands
all you gotta do to get you through is understand
you think you rather do without,
you will never make without the truth
the facts of life is all about you

----------------

Whether you’re rolling your eyes at me (heehee) or singing the song in your head, you have to admit that the lyrics deserve a “true dat!”.

This might not be the path we thought we were going on, but it IS the path we were given and we are going to make it a fun, fulfilling, loving path lined with flowers, rainbows and unicorns. Yup, unicorns. :)

Milestones | Down Syndrome Awareness Month

With DJ, my pregnancy was textbook. As textbook as it could get.

After he was born, we were the overly eager, overbearing parents that tracked milestones (yes, feel free to shake your head at us).

DJ never accomplished things when he was supposed to.

He did everything earlier.

He sat unsupported at 3 months. He crawled at 6 months. He walked at 8.5 months (we were robbed, I tell ya!).

When Cody was born, we didn’t know what to anticipate for milestones. We expected delays, but weren’t sure what kind.

We didn’t mind.

Don’t mind the head shadow or the fact that I used a flash. This was my wannabe photographer days. :)

The delays allowed us to enjoy the baby days longer. We enjoyed the parent-dependent moments that DJ robbed us of. :)

Cody crawled at 12 months and walked at 18 months.

We celebrated those milestones as if they deserved cake and a party!

We continue to celebrate those milestones no matter how big or small because you know what? He works hard for them.

He might not read at the level he is supposed to.

He doesn’t speak the way a typical 7 year old does.

He has a hard time snapping buttons on his pants because his hand muscles are weak.

But so what?

Milestone are guidelines that aren’t set in stone and it took us awhile to learn that.

Cody works hard to reach milestones and he does it at HIS pace.

We’re fine with that.

Honestly, there are moments when we sometimes wish he had more intelligibility when he speaks. There are times when I wish some things weren’t hard for him.

In those moments, we just have to remind ourselves that he IS capable. He is determined. He learns at his own pace. He WILL do it.

As much as possible, I try not to look at milestone charts. It’s a reminder of what he isn’t doing when I want to focus on what he IS doing.

And he’s doing a lot! 

When You Have to Be Their Voice | Down Syndrome Awareness Month

I hate confrontation.

I hate arguments.

I like to follow rules.

BUT if there is anything I have been learning through this journey of parenting a child with Down syndrome, it’s that I have to be willing to be Cody’s voice and fight for him.

I dislike it, but I do it.

I’m still learning and don’t have thick skin, but I do it.

I might cry through the whole process, but I do it.

I might get discouraged and want to quit, but I don’t.

This face and keeping a smile on it is what pushes me through.

Why?

Because if us parents aren’t going to stand up for him, who will?

Who is his voice when he doesn’t have one? We are.

We fully admit to not knowing everything, but we know when things aren’t working and that his behaviors tell us if something is working or if it isn’t working.

There are many out there that have your child’s best interest in mind. Unfortunately, there are also others that don’t. For those that don’t, we have to be the voice of our children.

There is no room for ego when it comes to advocating for our children, special needs or typical.

It isn’t about you. It’s about them – your child.

We are learning. We are growing. We are advocating.

We do it for him.

One of the Guys | Down Syndrome Awareness Month

I like to sign Cody up for things.

I do the same with DJ.

It’s what I do.

Sometimes, it works out.

Sometimes, it doesn’t.

Karate has always been one of those “doesn’t work out” things for Cody.

Last summer, we signed him up in San Diego. He half-heartedly made attempts at participating.

One day, my blood boiled as I watched the other kids in the class laugh at him, call him “special”, and not include him.

It was a student teacher instructing the class and she made no effort to put a stop to it.

With these children’s parents sitting beside me, I stood up and out loud said “I don’t think it is appropriate that you are making fun of him and that needs to stop.”

Not a single parent did a thing.

The student teacher (she was just a little bit older than these children), asked them to stop. They continued.

Parents still didn’t say a word.

By then, Cody stopped participating. Ashamed that the kids were laughing at him.

I don’t blame him.

When the main instructor entered the studio, I told him what had happened.

He immediately went up the to the group and reprimanded them. He even looked at the parents and addressed them.

Still nothing from the parents.

The parent of the child that initiated the teasing was not there. The teacher called him that evening to tell him what had happened.  He was beyond apologetic.

From then on, Cody had no real desire to be there.

I still don’t blame him.

Fast forward to now…

We signed Cody up at the Taekwondo school that DJ had been attending since he was 5.

I was nervous.

All those years that DJ attended the school, I had not seen a child with Down syndrome sign up.

On his first day of class, he proudly wore his uniform and was excited to attend the same school as his brother.

He ran the laps…

He wasn’t shy.

He didn’t dance in the mirror. Okay, maybe a little.

He did what the other kids were doing.

That was 3 months ago.

Now….

He continues to progress. He is excited to go to class. He is learning his form and can do it with almost no help.

I took this video of him yesterday.

You know what else was awesome…and what warms my heart the most?

He was is just one of the guys there.

The other students are quick to praise him (the same way the praise other students). They walk up to me after class to tell me what a great job he did learning something new.

When we are walking to the car, students come up to him to provide praise or help on a technique he may have had an issue with.

All the same stuff they do with other students.

I don’t expect life to be easy for a child with special needs. Shoot, I don’t expect life to be easy for any child or adult for that matter.

BUT it warms my heart and fills me with pride for not only my child, but the other children’s parents when children show acceptance. When they don’t just see his disability, but they see Cody.

Kids can be pretty awesome.

Just Be There | Down Syndrome Awareness Month

When we first found out about Cody’s diagnosis, when we went through his heart surgery, when he spent a month on a ventilator fighting for his life in the hospital and now with the occasional frustrations of fighting for what is best for Cody, we have friends that support us.

Some of the acquaintance type friendships have become stronger while some of the strongest friendships became weaker.

I get it.

I’m not hatin’.

I know that for some, it was/is hard to know what to say, what to do, how to be there.

Here’s the thing…

You don’t have to know the right words.

You don’t even have to say a word.

A hug of encouragement will suffice.

When we go through our downs, we just hope that you will be there.

When Cody was in the hospital, his dad and I took shifts to stay with him. One would spend the day at the hospital while the other was home with DJ. In the evening after visiting hours, one would go home with DJ while the other stayed the night. We did this for a total of over a month.

We had visitors, but they were few.

Friends and family from out of town called frequently and flew in occasionally to visit. We treasured those visits.

It was hard at the time to understand why local family and friends didn’t visit.

To be honest, at the time it hurt.

The ones that were closest to us came around maybe once or twice in over a month’s timeframe.

That hurt.

For awhile, I held a grudge, but then I realized that people handle things differently.

I’m the type of person that wants to be by your side and help when I can.

At the time, I couldn’t understand why close friends couldn’t be there for me when I was falling apart, when I needed a shoulder to lean on and just someone to be there.

It took awhile, but then I understood.

They didn’t know what to say.

That is the #1 thing I heard through the first few months of Cody’s life, “I don’t know what to say.”

I wish they had realized that we didn’t want them to say “just the right thing”. That wasn’t what we wanted to hear.

We just needed support.

We needed momentary distractions from life inside the hospital.

We needed to laugh more.

We needed to be reminded of what was going on in the world outside those ICU doors.

We wanted to know how your day was, what the weather was like, what was happening on our favorite TV show….

There usually aren’t “just the right words” to say when someone is going through something stressful.

Don’t look for those words before you offer support.

Your friendship is all that is needed.

When People Stare… (Down Syndrome Awareness Month)

I see the stares.

It comes from both adults and children.

They used to bother me.

A lot.

Sometimes, they still do.

When someone starts staring too long, I often say “hi” to break their stare.

For many, they stop staring and walk away.

For some, it is like they had been waiting for an invitation to approach us.

For those that stare without saying a word, I know you’re curious. I was curious before, too.

When he speaks, you might not understand him. Most of the time, we do, but sometimes it is difficult for us (his parents) to comprehend his words.

He wears glasses when many of your friends his age probably aren’t wearing glasses. That’s not his fault. He inherited that from both his parents.

He has an unbalanced sway in his walk. Most with swagger do. ;)

He doesn’t always look you in the eye when he’s talking to you. Don’t mistake this as a sign of not being confident.

He walks a little slower. That’s because he is curious about his surroundings and often appreciates the things that I too quickly walk by and don’t notice. He is my reminder to slow down and enjoy moments.

If you are curious, don’t be scared to ask me questions. I don’t mind.  I would rather you know about him instead of form your own conclusion about him.

He’s kind of an awesome kid.  I don’t want you missing out on that.

For those that accept our invitation to talk to us, thank you.

Most of the time, you have a family member with Down syndrome and cannot wait to tell us about him/her. We LOVE that!

Sometimes, you are an educator with a heart for children with special needs. We adore you!

Sometimes, you are just someone that wants to talk to Cody and pamper him with smiles. You…especially you…THANK YOU!

Down Syndrome Misconceptions–Changing MY Perception

When I look back to the moment we found out about Cody’s diagnosis, I feel ashamed of my reaction.

I wish I was more educated about Down Syndrome back then.

I know my reaction would have been completely different.

Truth is, I can count on both hands the interactions I had with individuals with Down syndrome while growing up. Children with special needs were not given the opportunity to participate in the school activities like they do now.

It was my ignorance about Down syndrome that led me to the momentary sadness of a Down syndrome diagnosis.

If I knew then what I knew now, I know my reaction would have been different. Completely different.

Daddy holding Cody for the first time. It was such a heart filling experience to hear him cry for the first time. Because of his Tetralogy of Fallot, the doctors were concerned that he would not be able to breathe and would have to go directly to surgery. He was a fighter from the beginning and didn’t need surgery until months later.

All I knew back then were the "stereotypes” of individuals with Down syndrome.

Seven years into this parenthood journey and I can stomp on those stereotypes. Honestly, if I could go back in time and slap myself for believing these stereotypes, I would! It would be like the scene from the movie Airplane (disclaimer: if you were born in the 80’s or later, you will likely not understand that reference).

Here are some stereotypes that I want to help break:

All individuals with Down syndrome look alike

Though there are some characteristics that are common among individuals with Down syndrome, that does not mean they will all look alike.

When Cody was born, my own OB/GYN questioned if he had Down syndrome. The markers were there, but he wasn’t sure. He had the single crease across his palm, but so did my doctor and he was sure to show me. Cody had narrow eyes, but come on, he is 1/4 Korean so we knew that was going to happen anyway. :)

So even if there are common features, individuals with Down syndrome will not always look the same. I have yet to meet a child that looks just like Cody. Most people tell me he looks like his brother. A more fair skinned, freckle-free, lighter haired version of his brother. ;)

Kids with Down syndrome are always so happy

Let me be the person to BASH this stereotype to the ground. If you would like to show up at my house at 7 am when it is time to wake Cody up, you will find that this whole “always happy” thing is not true!

Children are children. They are happy when they want to be. They are angry when they want to be.

Cody expresses EVERY emotion there is. From happy to cross-armed unhappiness, he can express it.

Kids with Down syndrome are stubborn

Cody can be stubborn, BUT no more stubborn than his “typical” 10 year old brother.

He likely inherited the stubborn gene from me…or his father…I think we can blame both of us middle children for that.

Individuals with Down syndrome will never learn in school

This was one of the stereotypes that concerned me the most. This was the stereotype that broke my heart. I didn’t think I was equipped to be able to educate a child that society perceived to be unteachable.

Cody has done nothing but prove this stereotype wrong. He continues to amaze me with his knowledge and how quickly he can learn. We have been working on new site words and for most, he can learn them in a matter of 30 minutes. He amazes me.

Some things come harder for him (like writing), but he tries and he is learning.

He has endless potential.

Your life will be dedicated to caring for your child with Down syndrome. They will never be able to take care of themselves.

This was the #1 stereotyped that I worried about. Who was to take care of him if something were to happen to his dad or I? How would he function? 

Since the moment he was born, Cody has been independent. MUCH more independent than his “typical” brother was.

Your child will learn what you teach them.

Though there are times that we want to cater to our children’s every need, we don’t. Independence and responsibility needs to be taught.

I watch him struggle sometimes when he tries to learn a new task (buttoning snaps is a current one), BUT I have to let him learn. He will be the first to tell me “stop, let me do it” and I have to listen. I don’t always want to, but I owe it to him to listen.

I have to give him the opportunity to learn how to take care of himself. I have to give him the independence to be confident in his decisions.

I have no doubt that Cody will grow up to be an independent adult. I have no doubt that he will want to move out when he is an adult to have a life of his own. A life where mom isn’t telling him to put a jacket on because it’s cold.  A life that will involve friends going clubbing. A life where I won’t be invited (ya, queue those violins for me).

He’ll be fine.

I know he will.