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"