A Tidal Wave of Support and a Trip to Holland

Once Julie and I posted on Facebook about Deacon there was a huge relief.  I immediately felt 1000 times better.  It was out there now, I no longer felt like I had to tell everyone that called, emailed, texted, etc.  that our son had Down Syndrome.  What I did not expect was the enormous amount of support that we would receive.  We literally had hundreds of people reach out to us.  It was something that I will never forget and something that I am extremely thankful to have been able to experience.

There are a couple of messages in particular that I want to share.  The first one is the post that my father in law made on his Facebook page.  He has a way with words that few people I have encountered can even get close; its almost like a talented artist painting a picture.  His words certainly struck a chord with me:

Well I guess I took it all for granted. Why not? My first four grandchildren came into my life completely healthy. Certainly I realized that with childbirth there is always a chance for problems, but I just never thought it would happen. On Friday, when I was first introduced to my new grandson, I continued with this over confidence. Deacon Robert Deuser is a beautiful little boy who appeared as healthy as all of the others. I returned home very relieved that he had arrived and that all was well.

That evening, as I hosted 50+ poker players in my home, I received the phone call that all grandparents fear. It was my wife, crying as she delivered the horrible news. Deacon, my beautiful new grandson, has Down syndrome. All of a sudden the bad cards I had been getting all game didn't seem to matter. In fact, for the next several hours nothing did. I suppose that the flood of emotion that I experienced is fairly common. You feel anger, fear and frustration all at the same time. I knew nothing about Down syndrome but it seemed extremely unfair that this precious little boy was to be its latest victim.

Over this weekend I have begun to familiarize myself with the facts surrounding Down syndrome. Ironically, it is not a lack of something important in Deacon, but too much of a good thing, so to speak, that is the problem. Where you and I have but 2 of the chromosome 21, little Deacon has three. That extra chromosome, repeated in all the cells of his body, manifests itself in many different ways, most of which are negative. The cause of this condition is unknown and there is no cure. Nothing his parents could have done would have prevented this situation from occurring. It happens once in every 700 or so births and last Friday Deacon drew the unlucky number.

This weekend has been an emotional roller coaster for me. I have cried more times than I can count. I have prayed seeking God's guidance in a situation that I am simply unable to fully comprehend. I have worried about how Deacon's condition would affect his future. I have also worried about the possible negative effects his condition would impose on his family. After all Julie and Blake have pretty full plates, with Brylee, Garrett and Cayson, not to mention their work duties. In short, I have spent most of my time since I learned of Deacon's situation, thinking about the negatives. But as I have tried to concentrate on the bad, the good has forced its way into my thoughts.

Amazingly, this good news begins with Deacon himself. Quite simply, he is the luckiest unlucky little boy in the world. Sure he was unlucky to get Downs, but from that point on he hit the jackpot. It is hard to imagine a better family for him to have been born into. As I watched his mother and father deal with this completely unexpected and devastating news I was again reminded of how proud I am to call Julie my daughter and Blake my son-in-law. They will fill his life with love and experiences. They will challenge him to develop to his full potential.

Deacon is lucky to be the youngest of four children. As he grows he will benefit from his older sister and brothers. They will laugh, play and explore together. Deacon will be taught many things by his siblings and, if necessary, he will be taught again and again. His world will be expanded as a result of these experiences. Brylee, Garrett and Cayson will be a constant in his life and they will provide him both love and, if necessary, protection. In the process, Deacon's older siblings will become better as well. They will mature into better people, more caring and understanding of others with disabilities.

Deacon's grandmothers are also a perfect fit for his situation. His Grammy is a Speech Therapist who has years of experience working with children with Downs. His Mimi is a gifted kindergarten teacher who can provided any educational support which he may need. Both are loving and nurturing and each will willingly rise to the occasion.

But little Deacon is not the only lucky one. Julie and Blake will benefit as well. They will watch as Deacon reaches milestones in his life and they will be unbelievably fulfilled by that sight. They will be blessed by the love that Deacon showers upon them in return.They will watch as their three oldest children gain enhanced maturity and responsibility as a result of the most important roles they play in Deacon's life. In very short order, Julie and Blake will not be able to imagine their lives without Deacon. In fact, I predict that all of the family and even the extended family will be changed, for the better, by Deacon.

There can be little doubt that Deacon's life will be different as a result of the Downs, but different does not necessarily mean worse. I do not know what a young man with Downs can accomplish if he has unlimited love and support, but if I am alive in 20 years I will see for myself first hand. I will see it in the life of my grandson, Deacon. Down syndrome has given him a hill to climb, but he will not have to climb it alone. I am so very thankful for the family that will be with him and I am so proud that he will take my name on that journey.

Love always,Papaw 

What a great message.  

We also had a couple of people send us this story that I think relates perfectly to our family.  Here it is:

WELCOME TO HOLLAND

by
Emily Perl Kingsley.

c1987 by Emily Perl Kingsley. All rights reserved

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......
When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."
But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."
And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

I have said it multiple times already, but I want to thank everyone that has shown us such huge amounts of support.  It is amazing when you really think about it.  There are times when I think that this world and the people in it are pretty rotten, but after seeing and hearing all the people that reached out to us you can't help but see that there are still a lot of really good people.  It is an indescribable feeling to hear so many positive wishes of encouragement.

Back to the details about Deacon.  At this point he is two days old and honestly Julie and I still notice nothing different about him in comparison to our other kids at this point.  He is breast feeding which I think is pretty rare.  The pediatrician thinks that his heart is fine, but he schedules and echo cardiogram before we leave the hospital to verify.  Everything is on schedule for us to leave the hospital at a normal amount of time, which is a good thing, because I was ready to go home.  Hospitals are uncomfortable places for me and I guess I am a bit of a home body anyway, but after all of the ups and downs of the past few days I just wanted to go home.  Not to mention, sleeping on the chair in the hospital room sucks.  There is no other way to describe it.  I tried to talk Julie into letting me go home and sleep, but she was not hearing it.  :)  It was all in jest and I wouldn't have wanted to leave anyway.

One thing I would like to note.  As mentioned previously, I do believe God has a plan.  When we were coming up with names Julie pretty much picked Deacon's early in her pregnancy.  (Yes, she did get it from the show Nashville)  But when you look at the actual meaning of the name Deacon you will find:

dea·con
noun \ˈdē-kən\

: an official in some Christian churches whose rank is just below a priest

Is it irony that we chose a name associated with God/church??  My personal opinion is...No Way!  We travel the road God has put in front of us and Deacon is one of the stops on our road.  He will help guide us through the path of our lives.  I can't wait to see where we end up!  :)