Dear Target,

Dear Target,
When my son Ronin was born with Down syndrome two years ago, we were shocked and scared but also saddened. Not saddened by the fact he had Down syndrome but by how we knew society would view him.  What would his future be like?
So today, I never imagined in my wildest dreams that my son would be featured in your advertisement three times, with the latest being in your annual Toy book.  You CHOSE to feature two children with Down syndrome and one child in a wheelchair in this year's toy book  and its freaking awesome!
 When I think of inclusion, I think of you Target and thank you!!  By featuring my son in your advertising, you are showing society that all people matter and all people should be treated like everyone else.  And now in my case I can show the world that Down syndrome isn't scary, the possibilities are endless, and most importantly my son and our family are not suffering.  Ronin is the blessing I never knew I needed.  How did I get so lucky?
So cheers to you Target for leading the way in this important mission. I hope many more companies and most importantly people will make inclusion happen and make it stay!

From
Ronin's Mom
Erin

Changing the heart of beauty

Seeing a model with Down syndrome  walk down the runway is a new exciting sight to see. It's exciting because its different. Before last year it was not seen or talked about. Seeing Izzy in the Target ad last year started a huge surge of awareness for Down syndrome and also the lack of models with different abilities being featured in ads and media.  This paved the way for Ronin to be featured in a Target social media ad on Pinterest and just a few weeks ago he was in a Target web commercial for baby food.  It was super exciting for our family to see him model for Target. "Model and Down syndrome" , I never thought those two words would ever be in the same sentence.
I've read multiple articles on social media and have seen all the comments online. You get an array of comments from all types of people.  There are more supporters than the usual "internet trolls".  To really know where you stand on an issue, you need to hear what the other side thinks and their reasoning.  So while reading some comments, a few words from a commenters were "exploitation" and "trend" and those words really had me start to think.

Inclusion is our main goal with society today but it isn't just what is seen though.
While we see Madeline on the runway, is there more inclusion going on behind the scenes? Are people thoughts and hearts being changed in the process? This is the inclusion that is the most important to me.  Do people involved with our models still use the "R" word as the adjective of choice? Do they place limits on those deemed different? Do they support the termination of pregnancy that comes back with a positive trisomy genetic screening? If Ronin was given the chance to model on the runway but the designer showed that his/her actions and personal words have not changed, i would not encourage my son to model in the show or would pull my son from the company's photo shoot.  Inclusion isn't a trend. Its not here today, gone tomorrow.  It is the words and actions of society that fuels inclusion.

If the inclusion we see is not fueled by the inclusion of word and actions what is the point of it all? Society will not change and will revert back to its old, comfortable ways.

The hope is that one day models of  different abilities wont be news or given a double look. I am glad it is starting now and will be excited to see what the future may hold for our children with Down syndrome.  The sky is their limit, especially when others do not place limits on them.

The Works of God

God has really been preparing me my whole life for Ronin.  Its the littlest encounters and clues that he gives you to reveal his large puzzle called life.  When you can start putting the pieces together, you come to an understanding and to a trust with God that he knows what he is doing and that its something greater than yourself.

I remember all the way back to elementary school. The kids with special needs came to our class for a visit.  I hadn't met anyone before that had special needs but was instantly drawn to their energy.  I've always been the mothering type; making sure everyone was fair, everyone got the same amount of m&ms, making sure no child was ever made fun of and if so i tattled to the nearest adult I could find.  I felt like a very protective mother when they got to be included in our class for the one day.There was a boy that stood out and I still remember him until this day. His name was Reggie and he was developmentally delayed. He was the tallest in the class, lanky with the best smile. After that day, I would see him around the school and was able to now say hello to him by his name. I think that made his day and it made my day that he was happy.  I never saw him again after elementary school but he made an impact on my life.

My direct connection to Down syndrome which has been a big piece to our puzzle has been my own cousin having Down syndrome also.  He is probably about 4 years younger than me and lives in Vietnam.  We have never met but we would always receive photos of the family and send letter and gifts.  I never really knew what Down syndrome meant, besides looking a little different than others.  I wasn't sure if Ronin's karyotype would show as the translocation type that may run in family's.  I'm not sure if they they my cousin's Cu Ly's karyotype but Ronin's is just non-disjunction trisomy 21.  So I guess my aunt and I just both hit the lottery with Cu Ly and Ronin.  I hope one day to travel to Vietnam to meet everyone.

While pregnant with Ronin, I had many encounters with people with Down syndrome and saw so many more people with Down syndrome at my job.  I actually had the thought that "Maybe my baby has Down syndrome"  because of this.  So I see that as my sign from God during my pregnancy.  It may not have meant anything at that moment but it was definitely a little hint of what was to come.

 These are they key memories that have served my heart into knowing that God was preparing me my whole life to be Ronin's mother.  Many people question why would a loving God even make people with special needs?  .

 John 9:1-3 

"As he went along, he saw a man blind from birth. His disciples asked him, "Rabbi, who sinned, this man or his parents, that he was born blind"?  "Neither this man nor his parents sinned" said Jesus, "but this happened so that the works of God might be displayed in him."

That's right. Ronin is a work of God. We all are. Ronin's purpose is just a little different and more defined.  His smile, I see God in his smile everyday and it really makes everything ok again.   Two years have passed since I started writing my story. My story is like a flower, blooming more and more each day.  With God's nuturing, love and patience Ronin will be the most beautiful flower this world has ever seen.  The seeds of God's hope will be planted on this earth through Ronin and the millions of other children who are meant to be here to show the good works of the Lord.

Amen.

In the Middle

So your child receives a diagnosis.  And with the diagnosis you get an outline of what your child's life will probably look like.  All those stages of development aka The Milestones.  You pretty much expect the worst sort to speak, your doctor says there will be absolutely, positively delays in your child.   Seeing typical children the same age as your child doing all these new things and your child is months behind is pretty damn hard.   There is no doubt that you will feel some sort of emotion, and some degree of sadness will set in.
But what if your child with special needs is not following this new outline? The shock and amazement are the emotions you feel.  You can't help but let the world know what your child is doing as you were told everything they wouldn't do and never were told what they could do.
But then where do you fit in?
Ronin is 2 years old.   He has been following more of the typical milestone timeline rather than the Down syndrome timeline.  And in his 2 years, its always been on the back of my mind. Why?

When you're child is doing all these new things when you weren't expecting them there are two reactions.  They may go in the order or not. For me they did.

1. You want the entire world to see that a diagnosis doesn't define a person.  So you post it all over the place of what your child is doing.  Mainly for people that do not know about your child's syndrome or illness, so you can squash any misconceptions.  You want to show proof that your child is more alike than different then other children.

2.  You start to realize that the entire world you are posting to also had children like yours.  Some may be following that diagnosis timeline and are really struggling.   Do I stop posting? Do my shares provide encouragement? You walk on tip toes about what you share now.



 It's really hard being in the middle of both the special needs and typical community.  Your child looks different so typical parents don't understand that he CAN do  exactly what your child is doing. And then your child is with his peers and is walking around pushing a toy and you secretly wish he wouldn't just until we left the class.   It shouldn't feel like this, so the loneliness creeps in ever so slowly.  You really have to push through this.


I'm reminded that each and every child is unique.  I doubt any child has a clue or will ever remember those milestones that we ever so look forward to.  It is all about our own personal emotions as parents.   We all just want our children to be happy, healthy and included. But in the end we hope our children will see themselves as we see them.

#DearDoctor campaign

Dear Nurse,

I had just had my baby. I went into labor before my scheduled c-section and my hospital I was supposed to deliver at was full.  So there I was at a hospital 30 minutes away from home, totally unprepared.  "What a beautiful baby boy, he's perfect and He's the most beautiful baby I had ever seen", are the words you said at least once to me.  I still remember your words two years later.  I do remember thinking that you must have seen hundred of babies through labor and delivery, do you say that to all the new babies?  But I think you saw my babies diagnosis before anyone else did.    And you're right, he did turn out to be perfect.  Your kindness will always be remembered in our journey.

From
Ronin's Mom



Many families who have had birth diagnosis's do not have pleasant experiences at all.
My birth diagnosis was fortunately overall pleasant.  The pediatrician that thought he had Down syndrome did say he was sorry but I don't think because he had Down syndrome. He saw a woman crying hysterically,  and was sorry that he had to deliver such shocking news.  He wasn't even sure he had Down syndrome as he only showed some signs so he said he might not even have it.  I tried to convince myself that he didn't have it.  I looked at him and saw he had Down syndrome then closed my eyes, looked again and it didn't look like he had it.  Waiting for the test results felt like an eternity and we got the results back from a grumpy old nurse that said " The test came back positive, i'm sorry" That nurse sucked at delivering the news but maybe she is better at changing bed pans?

The best part of my diagnosis was that the head ER nurse had a son with Down syndrome. They asked me if I wanted to meet him.  Why not I thought.  Who would know better than another parent.  So i met him and he was wonderful. He answered all my questions and when I told him that God made him perfect he started crying, which made me start crying.  He even called up his wife so I could talk with her.  It really made our stay encouraging.  We stayed a week and after a clean bill of health, we got to take Ronin home!

Everything happens for a reason. Maybe there was a reason why all these women went into labor in my area?  I am not sure we would have had such a pleasant experience elsewhere and we ended up exactly where we needed to be that night.  I know I had someone up above looking out for me and my family. I pray other families will get the respect and kindness I received during his diagnosis.

The story begins...

I never thought we would be here with our story....


After declined prenatal tests due to my age, my other typical pregnancies and a 20 week ultrasound that would only reveal a healthy baby boy ,which made 3 boys for my husband and I, when the pediatrician suggested Ronin might have Down syndrome four hours after he was born, it was quite a life shock.

After spending a week in the NICU with temperature and blood sugar issues, a pinch of jaundice and also getting his preliminary karyotype back that indeed reveal he did have an extra chromosome, we got to go home but what was next?  I did know a little bit about Down syndrome.  My cousin who lives in Vietnam also has Down syndrome.  I never really understood it though as a child, as I just saw his pictures and knew he looked a little different.   I immediately hopped on the social media and internet train, trying to find out everything I could about Down syndrome.  What should we expect? How long will he live?  How will society react to him?  The first few months were hard. Lots of tears, mainly about the uncertainly to all my questions.  I reached out to my local support group and I met some other moms in person.  I was really was blown away by all the support I had found.  It really filled in a lot of the holes of a sadness that would creep in ever so casually and still makes an appearance even now.  I might always mourn the son I thought I was going to have but every single day I overcome that with the love I have for my son who is perfectly him. Our story can only be written each day, there is no skipping to the end.  We try to live only in the "today" the best we can.

The love for Ronin is immeasurable.  I get to look into the eyes of a miracle every single day, who can say that?  The best piece of advice I received in the early weeks is to enjoy your baby.   That's all he was, he was my baby.  Like all babies, he grew and he grew and now is a busy little two year old. He loves Elmo, loves to swing at the playground, cries when he doesn't get his way and looks for me to comfort him when he falls down.  He doesn't eat his vegetables, loves his brothers with his whole heart and can lip sync to Bohemian Rhapsody.  He really is more alike than he is different but also as unique as they come. 

He has taught us to appreciate every little detail in our story called life.  We all have our own story, and yes his may have a few extra pages.  The extra doctor appointments, the extra therapy, the extra school meetings, the extra help he will need but the pages are also filled with the extraordinary things he will do in his lifetime, to show the world that different does not equal less.  We thank God everyday for Ronin and for the plan that He has for him.


Psalm 13:14
"You are Fearfully and Wonderfully made"