Friendship, fellowship and everything in between in our Down syndrome community.

I love our Down syndrome community.  The information, the support, and connecting with other families.  When I get a chance to meet new families one of the first things I say is welcome to the most supportive community there is.  Myself and another parent had a booth at a special needs resource fair and we met a women who’s child did not have a diagnosis, she came over to us and eagerly chatted.  She mentioned that she so wished she had a community to belong to and that is what she admired about our Down syndrome community.  We are strong in numbers and will always have someone to fall back on when we need support the most.  One definition of "community" in Webster’s dictionary is ,“a feeling of fellowship with others as a result of sharing common attitudes, interests and goals.”  That is so very true in the sense.  Fellowship is a friendly association with others and that’s where I want to distinguish the differences I have experienced between friendly association and being friends in our community.

I started with that notion that I wanted to be instant friends with every family that I met with Down syndrome.  Our kids both have Down syndrome, so we will and have to be best friends.  We have to be because I’m not sure if my other friends will understand.  I went through a time in the beginning where I chose to only talk to other moms who have kids with Down syndrome. Don’t get me wrong it was a huge blessing, to be able to navigate our path with others going through the same stages together. I do treasure this, always have, and always will in the years to come.  But after a while you see the notion come to life that your child is more than Down syndrome and that is what you start to fight for from others. If I want others to see my son for more than Down syndrome, then why is my life revolving around only it? Down syndrome is just a small part of my son. It does not define him or my family. You also come to realize that there is more to your family and other families than Down syndrome.  There are different parenting styles, culture, views and opinions and they may not align with your family’s.  So when you realize this, you may feel let down but you realize that it’s ok that Down syndrome wasn’t the glue to maintain a friendship.

So what is my point here?  Simple: You don’t have to be friends with every parent that has a child with Down syndrome. It just doesn’t happen and it isn’t realistic.

But I want to talk about the amazing fellowship that is and should be happening in our community.  Let’s remember to always respect other families and the stages of the journey they are on.  I know everyone isn’t like me, an open book, who will talk to anyone I see with Down syndrome and say, “Hello”.  Maybe someone isn’t ready to be so open. We can’t always assume someone is being exclusive or unfriendly. There may be language barriers, cultural differences or someone who is really struggling with the diagnosis. In those cases, a simple hello and smile can go a long way.  We can’t take anything personal, for this journey is ours and no one else’s. We may be on the same path, but the journey is our own.  In my time in our community, I’ve seen so much support go out to families that are in need or need help during a difficult time.  I’ve seen us come together to be there for one another, cry tears together and deliver so many meals for those who have a little one in the hospital or lost someone they loved.  We need to provide this support and fellowship to everyone that is ready to receive it in our community.  We all know about inclusion, and being human; it does get overlooked and forgotten in our community sometimes as well. Include everyone who needs support, include everyone who might be different than you (Sound familiar?), Include everyone that may be shy or unsure about opening up, and include everyone who loves someone with an extra 21^st chromosome. Let’s always remember this unique fellowship in our community and take pride in our inspiring group that is ever so desired by others in the special needs community.

I’ve learned so much about Down syndrome in the past three years since my son was born.  Most importantly I’ve learned so much about him in these past three years. I’m seeing more and more that Down syndrome is just small part of our lives even though people looking in may think it’s the biggest part of our lives.   I just love that the little extra chromosome comes with a big community of friendship, fellowship and support. 

There will always be sad days...

It's amazing, how you never forget your birth story.  The littlest details, the people, the place, your perfect child who was just given a diagnosis that you didn't even know they had until they were born.  All of a sudden something reminds you of your experience and you feel overcome with this insane about of sadness and despair.

Like everytime we go to my husbands sister's family house, I drive by the hospital where Ronin was born at.  My stomach drops everytime and I can replay the entire week were there in my head.   I still can see the doctor at the end of my hospital bed, waiting to tell me something.  Where the ice machine was, how my room was the furthest away from the NICU and how I had that long walk to go cry behind closed doors.  I remember cuddling my baby boy in the corner spot in the NICU,  hooked up to all these cords, being poked to check his blood sugar so, so often.  I can see everyone face, hearing the nurses play acoustic lullabys on their phone for the babies there. I still remember the other family's stories that were in the NICU with us; the stories never told to me but learned through observations.  I remember my baby boy having to have to get his heart checked after the official diagnosis of Down syndrome came through on paper.  The doctor checking and listening so close and was sure there was no murmur.  Learning of the results that his heart was ok and the emotion with that.  There are so many more details that I will never forget, I can't forget, forever etched in my soul and mind.  So to have these infinite thoughts when just looking at a building, is a powerful thing.

Sadness is a powerful thing
But to know true joy you need to go through a true despair.

I welcome the sadness because I know it will always come but I am given a gift right after I go through it everytime.

The gift of Trust

I could go through this life being sad that my son has Down syndrome. The constants of "Why did this happen to me, to us?", like an itch that you just cannot scratch.  But I am choosing to trust instead. He is closer than we know...

"Lord I hear You I know You're there
Closer now than my skin and bones could dare
Breathing deep within me
You are always with me

I can see You where eyes can't stare
Brighter now than the sun could ever dare
Breathing all around me
God I know You're with me here"

-Closer than we know-Hillsong

So after the sadness comes the most beautiful sunrise.  I trust that my son and possibily even I have a greater purpose.  I may not see it now and I might never see it but I know God made Ronin the way he is for his devine reason. I will never question that reason.  I am blessed beyond belief that Ronin calls me Mommy.

My story...aka A Birth Diagnosis

" Just another minute," the doctor said.

 Ronin then made his appearance with a loud cry.  Tears streamed down my face before I saw him. I was the mother to three little boys in that instance.  I was in complete bliss.  They finally told me how much he weighed. 6 lbs, 14 oz.  Totally not expected as his brothers were about 9 lbs each.  I thought it was cool that my son and I had the same birth weight.  He was 20 inches, while I was only a mere 18 inches.  He was little and 8/9 on the Apgar but then the nurse changed the score to 9/9.  A sigh of relief as an Apgar score could determine a baby's health at first.   They finally brought my boy over to me. He was still crying, when Jakin laid him next to my cheek.  He immediately stopped crying and joy filled my innermost being.  A baby, my baby, a new life, the life that was growing inside of me was right beside me.

I was all stitched up after having my third c-section and then wheeled to recovery.  Ronin followed me to my room where we immediately initiated nursing.  I had just quit nursing my three year old only six months prior, so I knew what we had to do.  Ronin latched immediately and stayed latched for over an hour.  The nurse then laid him next to me in his clear bassinet.  I was flooded with nurses telling me what a beautiful baby boy I had.  As he laid next to me, he looked at me with his eyes wide open. I looked at him and thought " He has Down syndrome."  I closed my eyes and shook my head, not knowing if my eyes were foggy from all the medication. I looked again and I didn't see Down syndrome again that night. The next visitor was a pediatrician from the clinic. They looked him over. I didn't think much of him checking on Ronin as he was doing well I thought.  I figured the doctor would say he looks good, keep nursing. But instead he walked in front of the bed and said there were some concerns....

He expressed that Ronin showed a few characteristics of Down syndrome

I screamed in sheer panic and in horror.  My husband's eyes immediately started filling with tears.
I felt like my heart fell out and was no longer beating to make me exist. 
He explained Ronin's chararcteristics; thicker neck, small ears, almond eyes, flat nose bridge.  He said however he was not sure because his features he was presenting could be still swelling from living in amniotic fluid.  I proceeded to tell him that Ronin is 1/4 Asian.  Most the features he listed were those also that some Asian people possess. I was actually born with all the same features minus the thicker neck.  The only way we'd know for sure was through a blood test.  We would get the results as soon as they could; roughly 3 to 7 days.

What was I supposed to do until then?  I've never been so lost in my entire life.  It was literally like picking a flower's petal saying  "He has Down syndrome", " He doesn't have Down syndrome."  I did that for four straight days.  Meanwhile Ronin was admitted to the NICU for temperature and blood sugar issues.  He would not latch for breastfeeding after that 1st day.  I had my heart set on nursing him, like I did his brothers, even with a goal for 2 to 3 years.   After him getting constantly poked and prodded , I asked the nurses to try a bottle with him. My milk was not quite in yet, so he did get a little formula.  Mind you, this hospital and staff never once mentioned the "B" word, even with all these issues going on.  They were so respectful and we even tried the nasal tube for feedings.   Ronin really started taking to the little bottles they had. So i at that moment, said I'm going to work on pumping to get my milk going.  

Life was really settling into the NICU.  You are grateful for the wonderful and modern medicine that saves so many babies.  The  NICU nurses are really angels at the hospital.  They take care of all the babies while their parents are away and truly comfort parents who are there. Looking at all the babies; a micro preemie who had been there a while whose mother had six other children to care for who couldn't be there 24-7, the baby who had a meth addicted mother, whose grandma came to visit every other day, another baby born a little early whose mother couldn't make it to their hospital in time, who had to make a pit stop here.  And then there was Ronin.  The baby who maybe had Down syndrome.  The longer we stayed in the NICU, the less of a chance his blood test would be negative.

Day 4 in the NICU, we received Ronin's genetic results.  The head nurse came in as soon as she saw that Jakin had arrived for the evening. He words were quick, " His genetic test was positive for trisomy 21. I'm sorry."  She handed us a packet of info then high tailed out of our room.   Days before, I had never in the 8 years of knowing him, have ever seen him cry.  We both cried when she left but then the most amazing thing happened to me.  The weight of sacredness had been lifted.  Like watching a bird fly into that brilliant  distant sunset,  it flew away.   God had set things into motion at that very moment.

My heart was not mine but His and He had plans for it.  

 Just like how He has a plan for Ronin.

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.