Down Syndrome Take Over Heaven

Death is a hard topic sometimes. Especially to someone like Tim who is so emotionally in tune. He has such a tender heart and in that heart is so much love and empathy. More than anyone I have ever known. It breaks my heart to see him sad.

Tim lost a friend the day after Christmas. He passed unexpectedly after having the flu. His name was Cody and he also had Down Syndrome. When Tim heard about Cody he broke down into tears and started talking about his friend. He talked about Scout Camp and how he borrowed his shaver. He talked about Special Needs Mutual and how he was a good guy.

Tim went to Cody's funeral the other day and when he came home I looked at his program. It was full of pictures of a very handsome, happy boy. Full of family members who were to give tribute to, I'm sure, their most favorite person in the world. As I looked at the pictures on the program I couldn't help but think how similar he and Tim look. Of course they both have Down's, but their stature, their body type. A wave of total sadness came over me and I thought, I would be so lost without Tim. He is so apart of us. I can't even imagine what Cody's family is going through. I can't. I just can't.

These special souls are such a gift. A gift that sometimes is given and taken away. But there will always be the stories, the laughter and the love. The love especially will always remain.

This is dedicated to Cody and his family. He will be missed by Tim and all of his friends from Special Needs Mutual.

Here is a link to his obituary.

http://www.legacy.com/obituaries/deseretnews/obituary.aspx?pid=168779762

A life long believer

Tim is 36 and still believes in Santa Claus. That's one of the million things that I love about him. With that being said, there is some leverage there when it comes to his somewhat "naughty" behavior. Yes, he misbehaves. Sometimes.

Tonight he snuck an extra sandwich knowing that is a big no-no.

Then this happened.



Santa Claus was calling on my phone wanting to talk to Tim. (I had recently put Santa Claus under my Dad's number and uploaded a pic.) I wish I had a picture of Tim's face when I showed him the caller id. His eyes were as big as saucers. He knew he was busted.

He answered and "tried" to talk his way around the issue at hand, but finally admitted to his "naughty" behavior and then agreed to be a good boy. He looked confused as he said "Norm, is this you?" I could hear my Dad through the phone assuring him he was the real Santa Claus. As he got off I assured him as well and as you'll see, I think it worked.

This is his response to his conversation with the one, the only, Santa Norm...uh, I mean Claus.

Merry Christmas everyone and Happy Freakin' New Year!

Down Syndrome Take Over Clemson

People who have Down Syndrome have the same dreams and aspirations as you and I. This is Rion, he has Down Syndrome and he has a very special letter to open.

His mom Susan Holcombe explains a little more about the letter and what it means.

"Rion was accepted into a special program called Clemson LIFE. This is an amazing two year program for a small number (15) of young adults with special needs. This isn't a program in which one can earn a degree. Right now, Clemson is one of five universities in SC with a LIFE program. I love that kids like Rion get to experience college life and this type of independence. Proud of my alma mater!"

I am proud of your alma mater too, Susan. I love that colleges are giving great opportunities like this to people with special needs. Everybody wants to receive a letter like this and Clemson and other schools are making it possible. This will make your heart absolutely melt. Way to go Rion!

The Lists

If you know Tim personally then you know he loooooves lists. He has a list for just about everything he's passionate about. He writes down everything he can possibly think of. He has a Fox 13 list. A list of Sports Teams with players names and some birth dates. Birthday lists of people, friends, family and complete strangers. An Eagle Scout list of everyone he knows that has accomplished that level. A list of Presidents (alive and dead) with birth dates, death dates, wives names, their birth dates, children's names etc...you get the idea. I could go on and on. He even has a Spirit World list. That's a list I can definitely wait to be on.

I want to talk about his Eagle Scout list. He practically asks every grown man if he is an Eagle Scout. I. Kid. You. Not. He is very proud to be an Eagle Scout. He evens uses this list to motivate some of my nephews to finish theirs. In fact, one of my nephews didn't quite make it and Tim has never let him live it down. NEVER. That's one reason, in my family, to get it done.

Tim got his Eagle in 2008. I have shared this video a couple of times, but I thought I'd share it now on the Official Down Syndrome Take Over The World forum. Here goes.

P.S. I think my mom deserves an Eagle award too.:)

Let's start from the very beginning...

Because it's a very good place to start.:) We'll start with the day that it all began, October 25, 1977. I was five years old and I only remember a few things about his birth. As I think back, I wonder if the details are what I actually remember or the things that have been discussed throughout the years. Either way, these are the memories that I want to share.

I remember my parents being brave. Very brave. I remember we(the kids) decorated the nursery. I remember my Dad getting all of us together in the basement to talk about Tim, Down Syndrome and what that meant. I think he was trying to digest what it was all about and how to convey that to us. I don't remember what was said, but I do remember how I felt. I felt sad. I felt sad because those around me felt sad. I didn't know what all of this meant being so young. I don't really think anyone in the family knew what this meant. We, as a family, became closer than any of us thought we could be.

I asked my mom to share some of Tim's birth story. Because of the personal and spiritual nature of her experience this is only a portion of of his birth story. I have to say, my Mom is amazing. Tim sure thinks so. He absolutely adores her, as he should.

"Often Mothers feel like there is just one more child out there waiting to become part of their family. I felt that way. There were a few years between the last child and Tim. I had quite a few sobering thoughts surrounding my pregnancy with Tim. I didn't want to express these thoughts thinking I may be over reacting. I thought that maybe I would be the one in my family to have a special needs child. I mentioned this to my mother. I also worried a little about my age. I also expressed my concern with my doctor at that time. So Tim's birth really wasn't a surprise. He was born during the time where you didn't know the sex of your child.

At the end of my pregnancy, I was having unusual labor pains that never really amounted to much. Finally, I had enough severe pains that took me to the hospital. They monitored the pains. I never was monitored with my other children. During a contraction, his heart rate would drop quite dramatically. I called for the nurse to explain what exactly was going on. She called the doctor. He decided that a C-section was needed because the baby was in distress.

My husband was not allowed into the delivery room. When I awoke after the C-section, my husband was by my side saying there was something he needed to tell me about the baby. I in turn told him the baby was a boy and that there was something wrong. This was a relief to my husband not having to tell me. He didn't really know all of this stuff about Downs Syndrome. My brother, who was a doctor and was at the hospital at the time, told him that his son would not be going to college and to take him home and love him. We were fortunate to have him diagnosed at his birth because there were families that didn't know for quite some time that they had a Downs child.

When we came home from the hospital, Tim's room was decorated with pictures and crepe paper. His five siblings were welcoming him home not knowing exactly what to expect. They have been supportive and loving to him for his entire life.

It is interesting to see how a birth of a child with special needs affects the people around you. My parents, being of an older generation, had a very difficult time accepting that this had happened to our family. Friends didn't know how to approach you or what to say. Our siblings were supportive but really didn't understand the impact Tim would have on our lives. I wanted to teach everyone about him so he would be accepted and others would feel comfortable around him. I have tried hoping others will love him like our family loves him.

Our children have an understanding of those who have disabilities. They can interact and feel comfortable around them realizing that these special people have feelings, wants, and desires like the rest of us. There is a soft spot in our hearts for these people knowing that they are trying their best to be as normal as possible. Tim wants to be like everyone else and enjoy the social aspect outside of his home. Our children love him. I mean really love him. The Grandchildren love him, really love him. He loves them as well. He loves his family."

Tim is such a gift. He has changed us as a family, as individuals. We are blessed as a family. So blessed.

Ups and "Downs"

So, I have finally done it. I have gotten so many requests on Facebook, (even from strangers) that I have decided to start a blog about Tim. Believe me, he has plenty of material;). I created this blog to share Tim stories, photos and videos. I also want to delve a little deeper into the more emotional side of children with special needs. The up and downs and the absolute joy that comes from these amazing people. For those of you that know Tim firsthand you know exactly what I am talking about. I hope this blog also breaks down some walls for those who aren't familiar with people with special needs. I have learned more about myself by being Tim's sister than by any other way. He is definitely a teacher. I love him for that.

There are a couple of things I want to share before we embark on this new adventure. It's definitely going be an adventure! First, I want to thank those of you who have personally reached out to me to share how Tim has touched you and your families. He's a pretty amazing kid and we are so lucky that he is apart of our family. Secondly, I feel I need to preface the start of this blog with...everything you see and read is done out of complete love. Tim has always been treated like everyone else in our family. We tease each other and Tim is no exception. I know most of you understand this, but I want to be clear that Tim loves to be the center of attention and we are no way making fun of him or putting him down in anyway. He's a silly kid and that's one of the million reasons we love him and why you love him too. I am sharing Tim with the world because he has always had a special way to make others laugh, love and see things from beautiful, judgement free perspective. Please feel free to share this with your families and friends as well as the Facebook page that I have created. Let the fun begin!