Hi From Syracuse: National Down Syndrome Month (Oct. 23-31st)

October is National Down Syndrome Awareness Month and in honor of that I have been sharing bits and pieces of Jena and our experiences with Down syndrome during the month on Facebook. (Not every day like some of my organized friends.) I have decided to cut and paste them in here so we will have a permanent record of what we shared. Many days I will talk to Jena about what I was thinking about writing or have her read it before I posted it. Many times she would say, "That's embarrassing." When I would indicate that I wouldn't post it, she would say it was still okay to post it. Thanks Jena for supporting Down Syndrome Awareness.

I posted the first couple of posts already under "October is National Down Syndrome Awareness Month". Here are the rest (taken from Facebook, so if you have read Facebook, this is a total repeat.)

(And I have decided to break these up into a couple of posts. There were more than I remembered and unfortunately I started from the last day and have been adding forward. )

Oct. 23

2010 Family Photo with Grandpa Hall's tractor

National Down Syndrome Awareness month: A friend posted the following stats from a study of people who have a sibling with Down syndrome:

"Out of the 882 siblings questioned:
-96% had affection towards their sibling with Down syndrome;
-94% were proud of their brother or sister with Down syndrome; and,
-88% felt they were better people because of their sibling with Down syndrome. The vast majority of brothers and sisters describe their relationship with their sibling with Down syndrome as positive and enriching

💙

💛"

My children will have to weigh in with their own opinions but I know that Jena's life has been richly blessed by her siblings-
Jessica Hall--our oldest who told me that our next child was going to be a girl with "a handicap" as we were waiting to adopt again. Jessica always tries to take Jena to do things (without her parents) like painting and movies. Scott Hall who is always willing to help us get her places in our busy lives. When he was a teenager, I would sometimes find her curled up in his arms laying on his bed. Ben Hall who from the very beginning was the one who always wanted her to live with him when we died and Tosha Hall Russell who gave up her place as the youngest to Jena Hall and always pushed her to do things herself. Jena is where she is at today because of your love and support of her. You were her cheerleaders for every skills she gained and her examples of what growing up meant. You were and are part of the force of angels who are helping Dad and I to raise her.

And I do think that their lives have been expanded by sharing it with Jena. And isn't that what families do!

Oct. 24

Kate Meyer and Jena at Graduation

Nick and Jena at Junior Class Prom

National Down Syndrome Awareness Month--

At Clearfield High School in Clearfield, Utah, Jena was in a couple of school plays including Suessical (as a "Who"), she managed the girls golf team, she was on the FLY team which did anti-bullying skits at nearby elementary schools, she started working at a bowling alley and she was even Junior Prom Queen.......you know the awesome thing--she or Clearfield High were never in the newspaper for these acts of inclusion. (No offense to the many articles you see about individuals with Down syndrome serving in student leadership or playing on the tennis team or making a basket during a basketball game. I love those and people need to see those things.) But for Jena, I was glad that these acts of inclusion were "everyday life" for her and that her school didn't try to make them into a publicity affair. She was a student of their school and she had opportunities to be involved like other students (with a little bit of support from awesome teachers, students and coaches.) Go, Falcons.

A Who in Suessical

Coach Andreasen and Jena golfing

Oct. 25

National Down Syndrome Awareness Month--which has also become Jena's Adoption recap--I guess you are getting your awareness of both Down syndrome and adoption raised this month.

Twenty years ago today, Gary and I flew to Las Vegas and met Jena for the first time. Actually we hadn't selected her name by then, so she was just Baby. This picture is a scanned copy of a copy of the Polaroid picture the social worker took of us hanging out with her for the first time. She was four weeks old and weighed about 6 1/2 lbs.

I can remember as we had to fly home without her that day (due to fog in Austin, Texas, another story) I asked Gary if he thought she would know that I was her mom or would she always just go to anyone. He assured me she would. That shows you how ignorant I was about Down syndrome, despite the reading I had done for the past weeks. It shows what kind of information was NOT available. People with Down syndrome are fully human beings in all sense of those words. They are parts of families who they adore, they love and laugh, they get mad, frustrated, and sad--they have hopes and dreams for themselves. Jena will not be the president of the United States, but neither will I or probably any of you. Life is good. I am Jena's mom to most of the world,it seems, and ( like with all of my children) I am a better person because of being her mother.

Oct. 28:

Inside a tent with Cortney Allen and Lexi Taylor

National Down Syndrome Awareness Month--

It is natural to be a bit "overprotective" when your child has some differences like Down syndrome. I got the best advice when Jena was little--If she wants to do it (or try it), figure out a way to make it happen! Another excellent piece of advice was "If she is happy and having fun, you are doing it right as a parent.". Those are probably the two pieces of advice that I have used over the years in trying to work things out for her.

It was a good thing, because Jena was not a big fan of "overprotective". She was always ready before I was. When she was invited to birthday parties I could only stay if other moms were once she was 5. In first grade she told me that she wanted to walk home from school "herself"--two streets and a couple of blocks. And she did it (with us following her a few days to make sure she followed our rules). And she was thrilled to tell me in January of the year she was 12 that she finally was old enough to go to our Church's Young Women's Camp and "no moms were allowed". So grateful to the YW leaders who support her in that goal as she attended 6 years of camp, 4 years of youth conferences and one trek without us there.

A story: At her first Girls Camp, most people didn't realize that her aunt and uncle were there helping with activities. Her Uncle Mike told me that he was so happy with how the young women in our ward (Walnut Grove Ward) treated Jena. He was running a rope swing which required the girl to sit in the swing and be pulled up and then set free to spin down a pole. Jena was always nervous about heights but she wanted to do it because the other girls were doing it. He asked the girls to be quiet so that he could hear Jena if she wanted him to stop winding her. He said the girls immediately became silent and watched her as she was pulled up. And when she did it, he said they cheered like she had won a marathon. Every time they saw Jena she was with girls having fun.

Oct. 29:

Picture taken by Julie Crist as part of her senior art project for BYU-I

National Down Syndrome Awareness Month--(getting towards the end of the month)--

Before Jena started high school, she told us that she needed to paint her room because she was "too old for baby blue walls". So she picked the paint and helped us paint it. As we were working on the room, she said she wanted a quote on the wall. I said sure, which one, but she didn't know. We looked at quote books and online, we searched through the ready made quotes at Target, but no luck. Then one day she saw one on the Disney channel and came and told me. Fortunately, it came up again when I was nearby...and here is the quote! "never ever give up....DREAMS DO COME TRUE!"

I think it is pretty much perfect for her. (Odd picture, I know. It is a picture of a frame picture of Jena on display at a UDSF conference. It was taken by Julie Crist as part of her senior art project.) People with Down syndrome have hopes and dreams for themselves and they can work toward meeting those goals just like everyone else. Sometimes it just might take a little more work on their end and a little help along the way.

Oct. 31:

National Down Syndrome Awareness Month (and aren't you glad that it is the last day of the month).......

One of the hard things for me when Jena first arrived was people telling us how wonderful we were for adopting her. We didn't feel special or unique. The heavenly direction was so loud and clear--we knew she belonged to our family and Down syndrome was just a part of it. Anyone who had felt the things we felt would have done the same thing. We have found that parentswho give birth to children with Down syndrome are also told the same thing---"Of course, you are the perfect family for this child." We all feel uncomfortable about those things. We are normal families who try hard to do our best for our children--all of them and with or without Down syndrome. Life is slightly different for us but as you can see, we don't mind sharing our journey. And it is true when I see another person with a child with DS I feel a connection with them and might try to start a conversation with them. (One day I was heading into Sam's Club with Gary and saw a family with a teen age son with Down syndrome. I immediately greeted them with a big hello like they were friends, assuming they would know the connections. After we passed, Gary pointed out that Jena wasn't with us, so they had no idea why I was so friendly to them. Oops! I had forgotten she wasn't with us. That is how we feel about other families--a universal connection.)

A saying that often shows up on posts related to Down syndrome is: "It is the best blessing that I didn't know I needed." I concur. Life is better for me because of my connection to Jena. And the same could be said about each of my children.....however they probably would prefer I didn't share about them all month including baby pictures.....although November is National Adoption Month (not sure the actual title). I do have more material for that.

(Just kidding, Scott, Ben, Tosha, and Jena!!)

And this is truly the end!