Thursday, October 13, 2016

If You’re Going to Read a Post About Down Syndrome, Read This One

October is Down syndrome awareness month. 

Unfortunately ... or shoud I say as usual ... things at the Rice Ranch have been pretty crazy this month – so I have not really had a chance to put a blog post together in honor of that fact. But today, while I was scrolling through my Instagram feed, I ran across a post that pretty much summed up everything I wanted to write. I asked my friend Heather Avis from @macymakesmyday on Instagram if she could send me a copy of that blog post to repost here. 

Like our family, Heather has two children with Down syndrome, and she has been a huge advocate for both adoption and kids with special needs for many years now. I love her passion for parenting, and I'm honored that she allowed me to repost her words here today.


If You’re Going to Read a Post About Down Syndrome, Read This One


My son and my daughter have Down syndrome and every year, for the past seven years I have used this month to share Down syndrome with others. Over the years, as I’ve parented my children and stood up as their most passionate advocate, I too have learned so much about Down syndrome. 


This month I thought about what it is I want the world to know about Down syndrome. This lead me to think about all the lies that have been disguised as truths and how those lies have conjured up unnecessary and unmerited fears and how those fears have led to the termination of countless lives, or unnecessarily stolen a parent’s joy (even if temporarily), all because of an extra chromosome.


I’ve thought about all the statistics and character traits and health issues complied in a Down syndrome diagnosis, and how I’ve shared a lot of that with my readers and Instagram family over the years. 


As I’ve sat down to write post after post in hopes of spreading awareness and answering many of your questions I’ve decided the one thing I want you to know about Down syndrome is this:


Down syndrome is not a problem. It never was. 

Down syndrome does not need a “cure” or a “solution” or to be fixed.


Every single “problem” my children with Down syndrome face, begins and ends with society discriminating against people with Down syndrome.


If we do not create space for people with Down syndrome to be, I don’t know… people with Down syndrome, then we will forever be trying to make them something they are not. Like good ol’ Einstein once said, “But if you judge a fish by its ability to climb a tree, it will live its whole life believing that it is stupid.” 


As soon as our babies are given a Down syndrome diagnosis we are inundated with one million ways to make our who climb trees!


These services, often called “Early Intervention” have only been around since the 70’s. Since the 70’s people! It’s only been within the last 50 years that society can begin to see any kind of worth for people with Down syndrome…but really, just barely. In the beginning, this Early Intervention has helped to keep people with Down syndrome out of institutions by offering new parents hope that their child will in fact do, A-Z. And friends, who our kids with Down syndrome are today is a freaking miracle, largely thanks to things such are Early Intervention. 


And I’m so thankful. I really am. So often people will comment about how we’ve come so far with Down syndrome. And while I agree, I see the pendulum swinging in a direction I believe is continuing to strip people with Down syndrome of their worth.


Over the past eight years have met with so many parents who have a child with Down syndrome. So. Many. Parents. And I’veworked with so many therapists who believe in and adore my kids. So. Many. Therapists. And the thing I am recognizing more and more is the most difficult thing about having a child with Down syndrome is not the child with Down syndrome, it is this never ending pressure to make people with Down syndrome more like people without it. And I fear this is the unspoken goal of all the interventions and therapies offered to our kids.


And you know what, it took me eight years to recognize, it is not my goal!


Dear world, my children are not typical children.

Dear world, my children have Down syndrome.

Dear world, please, please, please stop trying to change that.


This month, as we set aside 31 days to spread the word about all things Down syndrome there is one thing I want to say, one thing stirring up in the deepest parts of me:


My children are who they are, please stop trying to change it and start making room for it in your life. 


If our goal for Early Intervention and all the therapies that follow is to help our child be the best dang fish they can be, then swim on good friends. But when to goal for all the early intervention and therapies and supplements and vitamins is to make a fish more like a bird, friends, we are missing it! 


Can we all just think about this for a minute? Can we all just enjoy our kids exactly as they are before we start therapizing and servicing away the very thing that makes them them? Can we just take a deep, accepting breath and rather than force our kids to fit into a world, let’s demand, and expect our world to create the space needed for people with Down syndrome to easily fit into it?


I am so sick and tired of making my daughter and son do things that she/he hates to do and that are too difficult for her/him, all in the name of “normalizing” them…ugh! 


The other day I was sitting across the table from my daughter, working on one of the hundreds of things that are difficult for her, and we both wanted to rip our hair out. The thing is though, my daughter is a freaking gem. She is kind and funny and easy to be around. She is so brave and so smart. As I sat there, both of us frustrated and discouraged I thought, “Why am I making her do this anyway? So she can be more like other kids and less like Down syndrome?”


It’s crazy guys! Without a doubt, one of Macyn’s greatest attributes is her extra chromosome (August’s too, of course!)


And we are missing it!

And It is not her fault that we are missing it. 


Guys, your child with Down syndrome; that kid in your class who has Down syndrome; your neighbor with Down syndrome;they are a freaking gift to this world. JUST. AS. THEY. ARE! 


Yes! Go to speech therapy and do TalkTools and get your toddlers feet fitted for braces and spend the hours in physical therapy and always, always, ALWAYS, maintain huge expectation for your child with Down syndrome. Friends, do all the things! 

But please, please, please let them have Down syndrome. 



Thursday, September 29, 2016

Announcing ...

... the newest member of our family ...

....Coconut !

Friday, September 9, 2016

enjoying the little things

As I voice text this post into my phone, I am sitting upstairs in my children's playroom, watching Hayden set up his train tracks on the floor beside me... Lily is playing on the iPad downstairs, Madison is lying on her play mat, contentedly batting at the toys hanging above her, and Abigail is outside helping our neighbors set up a yard sale. We have just a few days left before we start homeschooling again; I can hardly believe the summer is almost over. 

And oh what a summer it's been…

Words fail to describe how relieved I am that our Bunny's surgery is behind us. When we left the hospital she had lost weight and was just under ten pounds - a month later she is eleven and half pounds and still gaining daily! Whereas before we had to work at getting all of her feedings in, now she is constantly eating. And I do mean constantly. It is so incredible to see the change.

Here's something I learned - or rather relearned - this summer: going through difficult times makes me infinitely more appreciative of the little things in life. 

I know I'm not unique in this, because I've talked to so many friends who have felt the same way. 

And this isn't the first time I've had this revelation. We've been through other tough seasons of life, and I've had that same sense of relief when we've come out the other side. I've experienced the same profound sense of gratitude for the otherwise ordinary, and dare I say it - mundane - things that previously went unnoticed ... like waking up in my own bed. Or sharing a meal with my family. 

I'm not new to this sensation of being overly conscious of the blessings that surround me after we've weathered through a particular trial. 

It just feels like it goes deeper this time. 

Maybe it's because we felt like we were genuinely walking through the valley of the shadow of death ... or maybe God in His grace has opened my eyes to the goodness and loving kindness that is truly following us, as the scripture goes "all of the days of our lives." 

Whatever the reason, the contrast is so vivid right now, between that dark valley and this present view of things ... that I don't know if I'll ever be able to go back to my previous way of processing life. 

I feel ruined - in a wonderful way.

It sounds sappy, but just watching the morning light seeping in through our bedroom windows and listening to the soft sound of my babies breathing beside me can put a lump in my throat. Watching Madison sleeping peacefully in her own crib, feeling the warmth of Hayden, pressed up against me in our bed ... I can't take these moments for granted anymore, because I realize what a gift they are. 

I don't know about you, but I have found that life is a constant classroom. 

I'm always learning, and sometimes lessons have to be repeated for them to sink in. 

And I know we'll go through more difficult seasons in the future, because that's just the nature of life. 

There are mountaintop experiences and valley lows to go through no matter who we are... there's just no getting away from the fact that life is unpredictable and there are no guarantees. We can make our plans, the Bible says, but the Lord determines our steps. And sometimes, even in spite of our very best efforts to avoid pitfalls, they still come. Stuff happens. Bad things happen - to seemingly good people sometimes. I can pray and plan and do my very best to protect my family and shield all my children from sickness and accidents and tragedy, but the truth is that pain is a part of life. As my husband always reminds me: we aren't in Heaven yet. If I expect things to always work out perfectly, I'm going to be disappointed when they don't. 

So as much as I wish I could stay on this "mountaintop", I know there will be more valleys to walk through. 

I just want... I just NEED... to hold on to this lesson I've learned again this summer. I need it to sink in, deep into my core ... life is a gift. 

Or, in the words of a dear friend, it's a thousand gifts.

Our son Tyler's twentieth birthday

My children are gifts. 

I'm thankful that I have friends who feel the same way about their children that I do - that they are blessings in our lives, not burdens. Most of the moms I talk to or hang out with on a regular basis share my love and passion for the career I've chosen for twenty-eight plus years called Motherhood.

So it really does boggle my mind to hear or read about others who view parenting in a different light, who see their roles as moms as a drudgery ... as if the job of raising kids was something to be endured, not enjoyed. It's a backwards mentality, in my opinion - the idea that the magical day when our children leave home is the real reward, the light at the end of the proverbial tunnel. I'm sad for those moms who can't - or won't - see that the real reward is happening right here, right now, before us. 

The fruit of our labors can be enjoyed every moment if we have eyes to see. 

Abigail, our beautiful almost-fourteen year old, and her sweet friend Avriel

Hayden, taking his job of watering the plants out back very seriously

Jonathan Samuel, age 18 - about to take Gold in a pickle ball tournament

Caleb, age 16, fishing with friends

I want to remember every day, that my children are gifts.

I want to be present for them... not so wrapped up in all the pressing needs of running a household that I can't enjoy the preciousness of their youth.

I want my children to hear and feel and know that they are my treasures - more valuable than any "thing" that money can buy, more deserving of my time and energy than any other task I endeavor to do.

I want to be mindful of the fact that some moms would give anything to have what I have right now - their child safe and healthy and home.

Madison and her pediatric cardiologist - no more appointments for a year !

a teddy bear Madison received from the cardiology team on her last visit :)

I might forget a lot of the lessons I've learned in life, and I know I still have more room to grow. But I want this lesson of gratitude to be etched in my soul. 

I want to grow in gratefulness each day, and keep growing. 

I want to live each day with intention, purposefully aware of the thousand generous gifts my Father is showering on me.

I want to take JOY in the little things, and not let them escape me because of the cares and concerns of life that are always going to be there.

beautiful blanket and gown made by Madison's Aunt Katy

I want to learn this lesson, once and for all ....

"Enjoy the little things in life, for one day you may look back and realize they were the big things."

Happy happy HAPPY September .... xoxo Patti