Great Gatsby Inspired Wedding | Jakfoto Films Interview with DPARKPHOTOGRAPHYApril 29th, 201311 days and counting. Baz Luhrmann’s next showstopper, The Great Gatsby, will be in theaters! We can’t wait! We had the opportunity to work with an incredible team to design the Modern Day Ode to Baz Luhrmann’s Great Gatsby inspired wedding, published on Style Unveiled: Capture your cinematic moments with DPARK today! |
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11 days and counting.
Baz Luhrmann’s next showstopper, The Great Gatsby, will be in theaters! We can’t wait!
We had the opportunity to work with an incredible team to design the Modern Day Ode to Baz Luhrmann’s Great Gatsby inspired wedding, published on Style Unveiled:
Capture your cinematic moments with DPARK today!
Our baby was born with 3 copies of Chromosome 21 -
Down Syndrome
…and we had a lot to learn about what that meant.
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This is for World Down Syndrome Day, 3/21
And, Knightly, this is for you.
the stats
(courtesy of National Down Syndrome Society)
The most common genetic condition, there are over 400,000 people in the US with Down Syndrome (or DS). 1 out of every 691 babies are born with DS.
down syndrome causes
Only 1% is hereditary. The other 99% is still a mystery to science. No toxin, food, environment or exposure has been found as the cause. While the only known factor is that it increases with age, the truth is that actually over 80% of babies with DS are born to women under 35.
We are a case in point.
27 yrs old. No family history. Healthy pregnancy.
the history of down syndrome
In the 1800s, Dr. John Down first published on Down Syndrome (hence the name Down Syndrome.)
And, check this out! This is a photo of Dr. Down’s daughter and grandson.
(photo courtesy of Global Down Syndrome Foundation)
History has been horrible to people with DS.
In just the last century (1900s), people with DS were institutionalized, untreated when needed, and purposely infected for medical experiments. Most died in infancy. Those who lived long enough were forced to be sterilized in 70% of the states in the US (according to News Medical).
As of 1983, life expectancy was only up to age 25.
Today, just 30 years later, people with Down Syndrome live on average to age 60.
so what is down syndrome exactly
It means someone was born with an extra copy of chromosome 21. 3 copies in total (hence 3/21, March 21 as World Down Syndrome Day).
So what does that mean?
There is an increased risk for congenital heart defects, respiratory, vision/hearing problems, Alzheimer’s, leukemia, thyroid issues, to name a few. But, like with any child, they are risks, not guarantees.
While many of Knightly’s baby friends have faced much more serious issues with long hospital stays and surgeries. MANY and most of these conditions are now treatable and most people with DS lead healthy lives. His friends have been absolutely inspiring and are recovering so well. We’ve heard parents dub the scars from the surgeries are “badges of honor” for their children.
So far, Knightly has had no heart, hearing, breathing or thyroid issues. The only thing that’s shown up so far is astigmatism (but honestly that was kind of a given since David and I both have astigmatism and all my siblings have worn glasses since early childhood).
Physical and cognitive delays can range from person to person from mild to moderate to severe. But with the leaps made in the past 30 years, the delays are not indicative of the strengths, talents and future people with DS, as with any person, possess.
In short, we love how one nurse put it:
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“An extra chromosome? It just means more to love!”
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down syndrome myths + truths
So let’s debunk some myths and share some truths of Down Syndrome today.
At this moment, there are people with DS who can and who have
(click links for real life examples)
Been able to drive
Graduate with a college degree in the US or abroad
Live on their own, own their own house, and hold a full-time job
Pursue their dream job and own their own business
And, you know what, one of the biggest myths we’ve been told over and over again (and let’s be honest here)
People with Down Syndrome are not innocent angels
They are human
Complete with meltdowns, stubborn streaks, attitude, PERSONALITY!
Truly, wonderfully human
…just like you and me.
And just like you and me, people with Down Syndrome are found in every background, every nation, every race, every income, every color of the rainbow
exceptions to the rule
OK, yes, it may be just a percentage of people with DS that have been able to accomplish what we just showed above.
But what’s the percentage of people you know who choose to overcome their odds, not use their physical limitations as an excuse but as a stepping stone, actually use their talents, pursue their dreams, fight for what they want, and truly live life -
Life to its fullest
Life that touches hearts, changes lives
Life that inspires
We have faith that, by God’s grace, our baby boy, people with Down Syndrome, and many others with “special needs”, will, in the next 30 years (just as in the last 30)…
…make possible what was once impossible.
to you the reader
If people with Down Syndrome and special needs can now do what everyone else thought was impossible, here’s a great thing,
so can you.
to all the contributors
THANK YOU, thank you to the amazing people that contributed for our World Down Syndrome Day shoot!
for more on our story
On giving birth to our precious baby boy + on Down Syndrome
where to get help
If you or a loved one wants more info or help for someone with DS (or really any special need), these resources are AWESOME. There is a community (PLENTY of communities) out there waiting to help:
how to give back
Please help – share, educate, inspire, pass it on.
We’re so thankful for ambassadors, for heroes, like you.
You can also give, even just $1, to the awesome, awesome people at ICEC who help provide therapies, encouragement and support for families with special needs. Give back here.
Behind the Scenes Counting Down to the Oscars Academy Awards 2013February 24th, 2013It’s almost here, ladies and gentlemen. Behind the scenes on the red carpet counting down for the 2013 85th Oscar Academy Awards! Beautiful artwork of various celebrities on the other side of these Oscars signs Love the beautiful gold curtain and red carpet at the Dolby Theater Inside the theater! Who has your vote? View [...] |
It’s almost here, ladies and gentlemen.
Behind the scenes on the red carpet counting down for the 2013 85th Oscar Academy Awards!
Beautiful artwork of various celebrities on the other side of these Oscars signs
Love the beautiful gold curtain and red carpet at the Dolby Theater
Inside the theater!
Who has your vote?
View the full behind the scenes story Oscar coverage at DisneyExaminer!
With our love,
The Parks
On Comfort and Joy | Happy 6 Months to Precious Knightly!January 25th, 2013We didn’t understand why. But, last Christmas, we were asked to share our story. Thank you to the talented team at Lunch Pail Pictures and to our family at Mariners Church for this gift of capturing our story. We pray that it may be an encouragement to those of you who may be facing challenge, [...] |
We didn’t understand why.
But, last Christmas, we were asked to share our story.
Thank you to the talented team at Lunch Pail Pictures and to our family at Mariners Church for this gift of capturing our story. We pray that it may be an encouragement to those of you who may be facing challenge, difficulty, and pain.
Praying comfort and joy for you and your loved ones.
for knightly
To Knightly, our precious little boy, being your parents, seeing you laugh and smile – it’s all been a little taste of heaven.
And we are so grateful that we get to be your parents.
Happy 6 months, darling <3
Knightly | On Moving Forward and On Baby TherapyJanuary 9th, 2013There can be so much beauty when a dream dies. You don’t get the job. A relationship doesn’t work out. The future you planned doesn’t come true. So often I’ve found that, after the grieving passes, a new future, one so much better, actually unfolds. ___________________________________________ Our baby has Down Syndrome. It’s been 5 months [...] |
There can be so much beauty when a dream dies.
You don’t get the job. A relationship doesn’t work out. The future you planned doesn’t come true.
So often I’ve found that, after the grieving passes, a new future, one so much better, actually unfolds.
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Our baby has Down Syndrome.
It’s been 5 months since we found out; and, honestly, it is still hard to say the words.
Because it wasn’t the future we’d planned.
Yet even though some dreams have died, others have changed and, when we can see past the tears, we see the world anew. We see new dreams. And, in them, there is just so much more.
And we are learning, one step at a time, to move forward.
how knightly is doing
His heart beats.
He is eating.
He is growing.
He is ours – our own beautiful baby.
The people we’ve met along the way – who face so many hardships with so much more grace and wisdom, have broken the mold of what we thought life was supposed to be like, of what happiness, real joy, and contentment look like. And they have challenged us to not just be better parents, but better people.
moving forward
After hearing our baby boy’s diagnosis, we reached out immediately to an organization that was the hub of resources for anyone with developmental disabilities: The Regional Center of Orange County.
Knightly was measured by one criterion after another for how delayed he might be. The interviewer measured his gross motor, fine motor, cognitive, communication, attention, tracking, and feeding skills.
…at just 6 weeks old.
I can’t believe you can measure “delay” at such a young age. I thought babies were all marshmallowy blobs (albeit adorable marshmallowy blobs) that just need to be fed and cuddled. What developments could they possibly measure?
During that first meeting with the Regional Center, I want to say I was a strong rock of a mother.
But honestly I was struggling hard and desperately praying that this was all a big mistake, the test results were wrong, and my baby didn’t need any of this.
In the end, we were so thankful we made that appointment.
…because that’s when Knightly’s therapies began. And that is how we came to meet some of the most amazing people – walking answers to prayer.
This blog is dedicated to the following two amazing groups of people: the Intervention Center for Early Childhood (ICEC) and the United Cerebral Palsy of Orange County.
therapy begins
Knightly began therapy twice a week.
They kept referring to it as early education. But, seriously, what kind of education and therapy can you really do with a baby?
Apparently, a LOT
group therapy
Every week at ICEC, we meet a large group of other parents and 0-1 year old babies facing all sorts of challenges from Down Syndrome, Cerebral Palsy, Spinal Bifida, to name a few.
For three hours, we rotate various stations with a team of volunteer professional therapists to work on gross motor, fine motor, cognitive, music, feeding, and communication skills.
Knightly gets a WORKOUT.
Exposure to different environments/stimuli
before
after
…Batman down.
From sign language to vestibular exercises, we’ve even been able to learn infant massage techniques to help stimulate his muscles.
After each session, the sweetest grandmothers from the Assistance League of Laguna Beach come to rock the babies to sleep for an hour each week so that us parents can meet together for the parent support group time. The Assistance League have also contributed immensely to giving the building and lots of resources and toys for the babies to use.
The parent support group has also been invaluable. To hear their stories and look at the hard journeys they’ve all been through, these parents have become our comforters, our heroes.
And most of all at ICEC, the therapists have been just gifts, invaluable fountains of information and encouragement.
1 on 1 therapy
Every week Knightly also gets to have an in-home 1 on 1 session thanks to UCP.
It reinforces everything he learns in his group therapies but concentrates on what he specifically needs.
The teacher poured feathers on him during Thanksgiving week to help him get used to the different textures.
And we couldn’t believe it but, at just a few months old, Knightly already made his first painting.
Next art project – photography perhaps?
Every week, we leave each session with homework – exercises that David and I incorporate to Knightly’s daily playtime routine. So everyday several times a day, we reinforce what he learns.
It helps to know we can help our son grow.
It helps us feel that we’ll be able to face the challenges that come.
With these amazing professionals and kindhearted people, we learn SO much. It’s been an unbelievable experience watching our baby grow and reach new milestones every week.
Knightly rolling over for the first time
With all our hearts, thank you to the amazing people at ICEC and UCP! You have helped turn our tears of desperation into tears of celebration, of hope, of joy.
how can you help?
These organizations contribute SO much despite the surmounting budget cuts they face. They run mostly from kind donations (whether it be money or even toys or resources that can be used during therapy).
What you give goes a very long way.
hear more of our story
On giving birth to our precious baby boy and on learning of his Down Syndrome
‘Til next time!
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“After all that I’d been through, after all that I’d learned and all that I’d been given, I was going to do what I had been doing every day for the last few years now: just show up and do the best that I could do with whatever lay in front of me.”
- MICHAEL J. FOX
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With our love,
The Parks