October is Down syndrome awareness month. For many of us it is a time for us to share about Down syndrome and what it means in our lives. This year, I had a planned blog post to share about Down syndrome in which I interviewed my dear friend Julia Gray about her book The Book about James.

Life took a different turn. Instead of advocating in October, I spent most of the month of October praying for my friend Julia and her family. On the evening of October 7, only a short time after Julia and I were texting about her plans to speak about her book and my plans to work hard to promote her book, Julia collapsed from a sudden cardiac arrest. Julia died on October 30. So Down syndrome awareness month took a back seat for me.

This is my blog post about Julia that I was going to share.  My interview I had with Julia.

Like her book, it is part of her lasting legacy.

I hope you enjoy it.

So, Julia, you are just the super-duper, coolest person ever.  How did you get like this?

I don’t know, Diane, it’s just been given to me to be this way.

Well, OK, now tell me about your family.

My husband, Kevin, and I have 6 children at home and 2 that are grown and out of the house.  Our youngest is James and he was born with Down syndrome.  We live in Germantown, TN which is a suburb of Memphis.  I’m a stay at home mom and I homeschool my children.  Well, of the 6 still at home, the oldest is about to leave for college and 3 of the others are now going to be attending “regular” school so suddenly I am left with only 2 homeschoolers.

Did you know that James was going to have Down syndrome before he was born?

Not at all.  In fact, since I was considered a high risk pregnancy I was monitored very closely and had LOTS of ultrasounds.  There had not been one single marker for Down syndrome.

So, how was it for you when you were told he did have Down syndrome?

I was not told right away.  I was the one telling all of the medical personnel.  No one saw it but I sure did and I was not happy at all.  I was pretty shaken and scared.  I knew very little about Down syndrome and none of it was good.  I did not want this in my life!

How long was it until you started to except that this was going to be your life?  How long did it take you to realize the blessing?

It certainly was a process that probably took 3 years to fully grasp but fortunately the work began almost right away so I wasn’t mourning horribly for too long.  Even before we left the hospital I was starting to realize positive things and began to understand that this was not a tragedy.  Still, it was tough and I had a lot to get through and process.  The funny thing is, the things I worried so much about ended up not being an issue at all.  I do clearly remember having a pivotal moment that really cemented the idea that we were going to be fine.  Even though I quickly came very far in accepting it was that moment that I kind of closed the door on grieving forever.

Can you share what that moment was?

James was in a little pre-school class for early intervention so he had to be about 3.  One of the mothers was discussing with another about nutritional supplements.  I had read a lot about these but the science was iffy and it was very hard to tell what, if any, would be beneficial and most of them were quite costly.  I had kind of laid all of that aside since we wouldn’t be able to afford them anyway but when this mom brought it up I was struck by the fear that perhaps I had held James back or even damaged him.  Suddenly the thought just came to me, “Why did we care so much about anybody’s IQ score?!”  Don’t get me wrong, I want to promote that as much as I can in James, just like I do in all of my children, but I just began to see how silly we all were in making intelligence the gold standard of measuring accomplishment.  People have all sorts of qualities and I think they all are important.  If my IQ is higher than yours does that make me a more worthy person than you?  No!  We all have lots to offer and intelligence or lack of is just a small part of what makes anyone who they are.  It was then that I let go of the last fragment of worry about Down syndrome and just decided to delight in James for who he was.  God made him just the way He wanted him to be and who was I to be saddened by that.

When did you decide to write your book?

I always wanted to write a book, I mean even as a child, but assumed that was a dream everyone had and figured I didn’t have the talent.  Then James was born and I wanted to find the purpose in it all.  Actually, as a family we had experienced some tragedy and other hard times in the years before James was born and I knew there had to be a purpose in all of it and hoped that one day I would be able to help others because of what I had been through.  As each tough situation appeared I had felt that the ones before had prepared us for what we were currently going through.  It was the same when James was born.  At first I thought I had been prepared to be able to survive the tragedy of his birth but it wasn’t long until I realized it had all actually prepared me to accept the blessing of his life.  I had felt and hoped that someday I could use our experience to help others and I thought that if I could write about our experience it would be able to get out there to many more people.  Of course I didn’t think I had the ability to write it but I had a friend from our school days that was an author.  She approached me about doing a book about my son after she had followed his antics on Facebook.  I thought she would be the one to write this but as she always reminds me, God is in control.  That is why this book is a part of the Living Inside the Testimony series by Betty Collier.  I wrote it but if it hadn’t been for her encouragement and guidance The Book about James would still just be a dream of mine. (She came up with the title also!)

What do you hope to accomplish with your book?

There is so much fear in this world about having a child with Down syndrome.  So much worry before a baby is even conceived.  If you happen to then give birth to a child with any special needs that worry goes atomic.  I’d like to remove some of that fear and ease people’s burdens.  I understand those feelings because I certainly had them but now where I stand I can see what a waste it all was and I’d love it if I could take even just the edge off of it for someone else.  Also, and just as important, I want to promote dignity and respect for those with special needs.  It is a hard thing if you have never been around anyone with a disability.  It can feel so awkward.  I know what that feels like too.  I think if we can break through that thin wall the population will start to see people more for who they are.  I want to make D and other special needs just not that big of a deal.  It takes all kinds to make up this world and it would be pretty boring if we were all the same.  I think the thing people need most is just a bit of exposure.  I want people to get to know and love a little boy named James and then look around their own community and find their own “James” to get to know and love.

How did it feel when the book was finally published?

That was so exciting and terrifying.  I’m just realizing it was a whole lot like the birth of James.  I was getting just what I wanted but when it came true I was scared to death.  What if no one liked it?!  What if no one read it at all?!  All that worry and fear was for nothing (just like having James), but The 

 Book about James instantly became a “Hot New Release” and #1 Best Seller on Amazon.  The reviews have been fantastic and many people have told me that the book has meant so much to them.  What an exciting ride – just like the ride I’m having being the mother of James!

What do you hope to accomplish now that it has been published and so well received?

Well, I want to get it out there even more.  I’ve had people from all over the US and some in the UK, Japan, and Australia reading it but it needs to be more widespread if we are to get our message out.  I want the whole world to see our family and our James and know we are just regular folks and that James has not been a burden or someone to fear.  I want the whole world to look around and see the people in their community and realize what each individual is adding and not live in fear or separation from those with special needs.  I don’t want parents who receive a prenatal diagnosis to have their decisions driven by fear.  I want everyone to see the truth about folks with special needs and embrace the differences.   I don’t expect my little book will be able to remove all fear and doubt but I do dream that it will help many be able to take a deep breath and have courage and hope and let go of despair.  Like I said before, I want to take a big step in making special needs just not that big of a deal.

Julia at our Dreamers location at Vantage Point Golf Range doing a book signing this summer.

If you are interested in purchasing Julia's book, please let me know. Every purchase will not only help her family with expenses that have been incurred, but also bring you the reader so much joy.

On Friday, October 7, I was texting with Julia.

I made a promise to Julia, a very short time before she collapsed, I texted her this:

"Everywhere Dreamers goes, the Book about James goes."

She let me know how happy this made her. We discussed some other things, and then silence.

You can be sure that this is a promise I plan to keep.