The 15 Days of Winter Christmas Pageant

Sadie loves school.  Yesterday she got to be in the Christmas pageant.  They "sang" (and by sing I mean the teachers sang) the 15 days of winter.  It was sort of like the 12 days of Christmas, but on the first day of winter my teacher gave to me, one tall green fir tree, etc.  Sadie was #8, she was 8 knitted hats.  (I forgot to push record in time to get all 15, so it starts at 13...oops!)







Then, after they did their whole show, Santa came!!!



We had a good time, I got to visit with some of the other parents in Sadie's class, and even found out that one of Sadie's classmates lives just a couple of blocks away!!  ...and she has a swing.  We're gonna go over there for a playdate during Christmas break.

Merry Christmas!

Santa sighting

I saw Santa today.  Apparently he lives in my neighborhood. 

And he drives a red VW Bug.

He caught my eye as he waited for me to pass before pulling out of the side street onto the main street and he nodded, as if he knew if I'd been naughty or nice.

This morning, as I was driving Sadie to school in all my hustle and bustly bad mood, there was a man driving a red VW Bug wearing a Santa suit.  I actually laughed out loud.  It made my day. 

I love this time of year!

Christmas at Ryan House

Yesterday we went to see Santa.  And we also visited Lily.  Both of them were at Ryan House, both of them lit up the room they were in.

Ryan House had a Christmas party for all the kids who take advantage of their respite facilities.  There were kids zipping around in power wheelchairs, climbing on the playground, and sitting in their wheelchairs next to their parents.  We saw people we haven't seen in a long time, and reconnected with people we haven't seen in an even longer time. 

Santa held both of my children and told me what a blessing each of them is.  And I thanked him, while admiring the glitter in his (real) beard.  He was obviously not your average rent-a-Santa, he had a special heart, and a twinkle in his eye.

But while all of this was happening, while children were laughing and playing and taking home toys, Lily was just down the hall fighting for her life and losing terribly.

You see, Lily has bone cancer, and she's on hospice care.  She is at Ryan House to die.  Knowing this, made visiting Santa yesterday bittersweet.

I am so thankful for Ryan House and all the things they do.  For Santa and playgrounds and reuniting me with old friends.  For making me feel normal with my tube-fed, non-verbal, physically handicapped child.  But, I am also thankful for Ryan House because they are making Lily's last days enjoyable with tea parties and art projects.  They are giving her mother, my friend Alicia, help and rest that she so desparately needs. 

And that's what Christmas giving is really all about.

Christmas Highlights

I didn't take nearly enough pictures at Christmas. It's really unlike me, I usually always have my camera out, but this year was different. First of all, it didn't really feel like Christmas. Moving and then having my cat disappear then getting to Oregon totally unprepared made for a lot of stress. Things were just...off. I did take some pictures, so I'll share them as I highlight Christmas 2011.

1. My mom finally got a bed for us to sleep in when we come visit. For the last 3 years we've been sleeping on the futon mattress on the floor. We put it on the floor because somehow it's more comfortable than trying to sleep on the actual futon... it's weird, I know. So, it was really exciting to actually have our own bed!! However, the futon is still in the guest room (mostly because to get it through the doorway you'd have to take it apart), so that's where Sadie slept. She NEVER slept with us in our bed! What a big girl we have!

2. The second part of that is that Sadie gave up her pacifier. When she got sick, just before we left, she got some canker sores in her mouth and it made her not want the pacifier. So, I used that as an opportunity to let it go. I know that a lot of children with CP (or other neurological special needs) continue sucking on the pacifier, um, forever? I'm not really sure how long, but I know some 12 year olds who still need it. So, it's a big deal for Sadie to be able to sleep without it!

3. Usually, one of the first people I see when I get to Oregon (besides my mom) is my best friend, Anna. Often she will show up at my mom's house within hours of us arriving... with 3 little boys in tow. However, this year her family left to go up to Washington for Christmas before we even got there. I made a comment the second day we'd been there that it was weird to have been there for 2 days and not seen Anna. They were supposed to come home the day before we left, and she was considering even taking the train by herself and coming home earlier than that, but (fortunately?) they all got sick and came home early anyway!! I got to see her 3 different times (instead of just the day we were leaving), and her boys came over to mostly play with Brian. (I'm boring because all I do is sit and talk to Mommy!)


4. Another thing I always make sure I do when I'm home is to visit the Johnsons. The Johnsons are like extended family. When I was living in my mom's house because she was in Korea, and my dad lived here in Arizona, I spent every holiday with the Johnsons. Plus I spent at least one evening a week over there just hanging out. I love them and I consider them family, and they're always busy busy busy, but I force my way over there anyway!! We didn't get to enjoy our usual kind of visit where we come over for dinner and then they make me brownies and we sit and talk for hours and hours until it's almost midnight and we force ourselves out the door and back home. Instead we came over in the middle of the day. It wasn't a short visit, but it felt sort of like it. The best part, though, was that Joel rocked Sadie to sleep. He was holding her, she was fussy, he started rocking, eyes closed. Since we gave up the paci, sleeping without it is a new thing. We were amazed that this happened, and of course, he loved it!! It was so sweet to see.

5. Christmas morning was also different this year. Instead of my brother's family coming to my mom's house and us all eating brunch and opening presents, we went to their house! They also just moved... from Portland down to Eugene the first week of December. They found this cute little rental in South Eugene that has a studio for my brother to work and record, and a big beautiful back yard. It was a nice change, and I'm sure much more comfortable for them, having 2 small children to watch out for and keep an eye on! My sister-in-law made us quiche and cinnamon rolls and we pigged out and opened presents and laughed and played and had meltdowns and rocked and then went home!!

6. Another friend of mine, whose actually a friend from High School, but who lived in Phoenix for a while also was visiting her mom for Christmas. Tanis moved to Colorado last May and I haven't seen her since, so when we learned we'd be in Oregon at the same time, we made plans to get together. It was so good to see her! I really miss having her here.

7. Tanis and I made plans to meet at a restaurant, sans children (she has 2 little boys) while we were in Oregon together. But our little Mommy's night out turned into something way better. First of all, Brian and I got to go out without Sadie. We were able to leave her with my mom and enjoy a couple of hours to ourselves for the first time since we'd gotten there. But second of all, another High School friend, who I didn't even know was in town, happened to also be at the same restaurant! I hadn't seen him in probably 3 years, and never met his son (who is such a charming 3 year old!). We all had a great visit/dinner together, and after Sean and his family left, Tanis and Brian and I sat there another hour or so just catching up!

8.Every year at Christmas my mom plays in the Opera. She is a professional violin player and the Eugene Opera usually does a show on New Years Eve. This year they did Carmen. It's fun when she does this because we have the opportunity to attend the dress rehearsal, which I've been going to since I was little (I used to bring my homework and sit there while they rehearsed). It's just like the real performance (they stop once in a while, but not much), but it's less formal. And we can bring Sadie if we want. And it's free. Brian loves doing this, but it's hard with Sadie. And this year I was just so tired that I opted to stay home, and Brian went with my mom by himself (which was probably more enjoyable than having to bring Sadie). He really enjoyed it and I'm glad he got to go. And I really enjoyed my boring screamy night at home!

9. Sadie got her first pair of shoes for Christmas. When I was buying them, I couldn't help but think of this story someone sent me. It wasn't easy to find the perfect shoe. We needed a toddler size, but a baby bootie sole. We got the last pair. And they're pretty too. Having no idea what size Sadie wears, we brought them home not knowing if they'd fit. They're a little big, but that's okay. They keep her socks on, and they'll fit her for a few months. And I love them!

10. On our very last day in Eugene, my friend Andria came to visit and say hi. She brought with her Jennifer, who was the youth pastor's wife growing up, then became my piano teacher, and now is an adult friend. I haven't seen Jennifer since my baby shower. When Sadie was born, Jennifer wrote a song about the situation. About trusting God no matter the circumstances, and she brought it over and sang it for us the day we left to come home. It's beautiful, and true, and worshipful, and I'm really glad she shared it with us.

I hope everybody reading this also had a wonderful holiday, whichever one you celebrated!!

12 Days of Special Needs Christmas...with new jammies

We're in Oregon for Christmas. It's been nice to be here and not in my crazy, unpacked house. I hoped this would be a vacation, and so far it is! We had a LONG, but good flight here, and then Sadie had a really good 2 hour car trip from the airport to Grammy's house. We're definitely thankful for that.

Today is Christmas Eve, and I'm really excited about our tradition we started 3 or 4 years ago. We don't have a lot of Christmas traditions (yet), but this is one that I started when we started thinking about having a family, because I thought it would be easy and fun and one that we can share in no matter where we are celebrating Christmas.

Jammie pants.

On Christmas Eve everyone gets to open one gift (see how this can be good for little kids?), a specific gift, one with special Christmas jammie pants (or full pajamas for kiddos). The first year was a little rocky, but it's turned into a fun game to find the silliest, yet comfortable, jammie pants for the other person. And now that we've been doing it for a few years, nobody questions it, it's just expected. So then the idea is that everyone sleeps in their new jammies so that on Christmas morning when you get up and open all your gifts, you'll be in your new jammies!

I love my little tradition that I started, and I'm excited to continue it for many many years. Make sure that when I post Christmas pics later (or on Facebook) you notice all our nice, new jammie pants!

And now I'll leave you with this... (I stole it from another spesh mom on Facebook)

♥ The Twelve Days of a Special Needs Christmas ♥

On the first day of Christmas, the good Lord gave to me: a child with a disability.

On the second day of Christmas, the good Lord gave to me: a heart full of love for my child with a disability.

On the third day of Christmas, the good Lord gave to me: an ache in my heart and a heart full of love for my child with a disability.

On the fourth day of Christmas, the good Lord gave to me: a tear in my eyes, an ache in my heart and a heart full of love for my child with a disability.

On the fifth day of Christmas, the good Lord gave to me: an unsuspected strength for the tear in my eyes and the ache in my heart and my heart full of love for my child with a disability.

On the sixth day of Christmas, the good Lord gave to me: a ray of hope, an unsuspected strength for the tear in my eyes and the ache in my heart and my heart full of love for my child with a disability.

On the seventh day of Christmas, the good Lord gave to me: a sense of humor, a ray of hope, an unsuspected strength for the tear in my eyes and the ache in my heart and my heart full of love for my child with a disability.

On the eighth day of Christmas, the good Lord gave to me: supportive friends, a sense of humor, a ray of hope, an unsuspected strength for the tear in my eyes and the ache in my heart and my heart full of love for my child with a disability.

On the ninth day of Christmas, the good Lord gave to me: remarkable doctors & therapists, supportive friends, a sense of humor, a ray of hope, an unsuspected strength for the tear in my eyes and the ache in heart and my heart full of love for my child with a disability.

On the tenth day of Christmas, the good Lord gave to me: an appreciation of small accomplishments, remarkable doctors & therapists, supportive friends, a sense of humor, a ray of hope, an unsuspected strength for the tear in my eyes and the ache in my heart and my heart full of love for my child with a disability.

On the eleventh day of Christmas, the good Lord gave to me: a sense of pride, an appreciation of small accomplishments, remarkable doctors & therapists, supportive friends, a sense of humor, a ray of hope, an unsuspected strength for the tear in my eyes and the ache in my heart and my heart full of love for my child with a disability.

On the twelfth day of Christmas, the good Lord said to me: Reach out and share your sense of pride, your appreciation of small accomplishments, your remarkable doctors & therapists, your supportive friends, your sense of humor, your ray of hope, your unsuspected strength for the tear in your eyes and the ache in your heart and your heart full of love for your child with a disability.

Sadie's first - Sensitive Santa

A few weeks ago, a Mighty Mom posted that there would be a "Sensitive Santa" in the valley for kids with special needs to come to a quieter environment to see Santa and get their picture taken. But the address was REALLY far from our house (no matter which one we were in)! Luckily, they had Saturday hours, and we were going to the dentist on Saturday, and Sensitive Santa happens to be very close to the dentist!

Bingo!

It was a really cool experience. There's no way Sadie could have handled Santa at the mall. Too much noise, too much waiting, and they wouldn't have been patient or had any idea about her special needs. But this Santa (and his elves) were awesome! Santa held Sadie and cuddled her, and they took 2 different pictures because the first one wasn't good enough. They were all so nice and we were the only ones there when we got there so we didn't even have to wait.

They told me they do Sensitive Santa every year... we just might have to make the drive!

Williams Family Reunion 2010

Almost a year ago, when I found out so many of my family would be in one place for Christmas, I decided we needed to have a family reunion. For so many years we've been scattered all over the country. Some of my cousins that I remember growing up with, I haven't seen in almost 10 years!! Some have gotten married, some have had babies, some babies have turned into teenagers, and the "big kids" have now graduated from High School and moved out!!! It wasn't that long ago when we were all sitting at the "kids's table" eating Thanksgiving dinner.

We met at a pizza parlour in Eugene and enjoyed pizza, white elephant gifts, and loud talking (a signature of the Williams family). Many got to meet Sadie for the first time...too bad she screamed all day. But we got some good pictures...and I got some good hugs.

Sadie and her second cousin, Roman (he was born 10 days after her)

the original grandchildren

Christie, Marcus, Luke, Beth, Noah, Brooke

The Williams Family (minus John and family)

Sadie's First Christmas

Sadie and I went to Eugene way before Christmas, December 13th actually. The plan was to spend some time with friends and family, then Brian would join us Christmas Eve and we'd all have a wonderful, happy, Merry Christmas. Flying home on the 29th would then get us back in time for New Year's Eve. It sorta went like that.

This was Sadie's first Christmas, and she slept through most of it (not complaining!). She got some really great presents like a book all about colors, some PlayDough, and a pillow pet. But, mostly she liked the lights on the tree and the crinkly wrapping paper! ...babies are so easy to please!

This is our third year of my Christmas Eve tradition that I force everyone to participate in! The idea is that everyone gets to open one gift on Christmas Eve night...new jammies. THat way when they wake up in the morning, everyone will be in brand new cute jammies for pictures!! Here's Sadie's first Christmas Eve jammies.

Sadie's only cousin, Attilie got the same jammies for Christmas Eve, so on Christmas morning, they were matching...they were also both asleep for most of the present unwrapping!

(we were trying to get Attilie to hug Sadie)

Sadie really enjoyed looking at the Christmas tree. Actually, anywhere we went, she found the Christmas tree. She likes to stare at lights, and big, dark, ominous objects are also interesting. SO, what could be better than a big dark object covered in twinkly lights!

While my brother's family was staying in Eugene, his dog stayed at our house. Her name is Rosa, and I don't like dogs very much, but Rosa makes me sorta want a dog. She is so good, and she loves babies. Sadie also likes Rosa.
My mom gave both the girls matching Christmas dresses. The idea was to have portraits taken, but things got so busy that we could just never find time for that. So, instead we did this...

(See, Attilie does love her cousin!)

Overall, it was a great Christmas! We enjoyed spending time with family and eating lots of chocolate. But, we couldn't help wondering what next Christmas will be like. Will Sadie be sitting? Will she be walking? Will we be traveling with a walker instead of a stroller? Will she be able to open some of her own presents? Will we need a bouncy chair? Oh the possibilities this next year brings!

Merry Christmas Everyone!

Family Christmas Letter

In the past we've sent out a letter with our Christmas cards updating everyone on our year. I just sent our Christmas cards and decided not to include a letter this year. My reasons are: 1. too much has happened to sum up on a page, 2. most people on our Christmas card list have been keeping up with us, and 3. it saves paper to just do it here and remind people to come read our blog. So this post will serve as our yearly family update, and even if you didn't receive a Christmas card from us, I hope you feel cheered by our holiday update.

Our year began with the birth of our daughter, Sadie on January 19th, and then quickly took all sorts of unexpected twists and turns to places we never even imagined. She was immediately hospitalized due to lack of oxygen, which despite amazing technology, resulted in some permanent brain damage. At one point we were told our little miracle would not survive, and we prepared ourselves to say goodbye. But here she is about to celebrate her first birthday, and although she comes with her own set of challenges, we can't help but feel blessed when we look at her. The fact that God chose us to be her parents is nothing to scoff at. This deal we got is not for the faint of heart!

Top ten lessons Sadie has taught us this year:

10. The government, while a huge, slow-moving organism, does do good things. We are thankful for their early intervention program that has provided Sadie with therapies.

9. The Foundation for Blind Children Infant Program is run by and attended by people I cherish and love and admire, even if some of them don't know my name.

8. Mama knows more than the doctors sometimes...like when I know my child isn't having seizures.

7. Drugs, while usually bad, can sometimes be very good.

6. Not all kids fall asleep in the car!!

5. Our marriage and our friendship is stronger for coming through this together.

4. It's worth it to just buy another bouncy chair.

3. Sleep is NOT overrated!

2. We have amazing friends and family.

1. Never underestimate the power of prayer.


We have also had the privilege of attending and participating in many events because of our involvement with Phoenix Children's Hospital and The Foundation for Blind Children. I have told Sadie's story on the radio, we met an MLB pitcher, we almost got to meet an NFL quarterback, we've seen the inside of the new hospital, we attended a reunion of all babies in the Neuro-NICU, and I will be running a half marathon in January to raise money for the hospital. I can't wait to see what opportunities 2011 will bring.

More than anything else we have learned many many things this year. As we were not prepared for this lifestyle, this year has been one big cramming session about neurology, development, and resources for the disabled. The brain is an amazing organ, Sadie's especially, and I imagine that 2011 will only bring us more education.

Speaking of education, I got a new job this year teaching online school. 9th grade English. It's the perfect thing for me to do in that it allows me to be home with Sadie, and permits flexibility in our schedule. It's been a little overwhelming these first few months, but as we finish out the semester, I feel somewhat prepared to start the new one. The best part about my new job is that I work with a wonderful group of people, who all love their jobs. I feel like joining the Arizona Virtual Academy has been like being welcomed into a big, loving family.

Brian still works for Starbucks in the Foodservice Dept. and not a day goes by that we aren't thankful for his job. He also gets to work mostly at home. Even though he often spends the majority of his day out and about town, or travels to another state overnight, he gets to enjoy a home office, and Sadie and I get to enjoy Daddy more than a lot of families do.

Thank you for praying for our family this year. Thank you for crying and rejoicing and celebrating with us. We can't wait to see what 2011 brings, and we can't wait to share it with you!

Love,
Brian, Christie, and Sadie

Quarterback sneak

Last Friday, we attended a Phoenix Children's Hospital fundraising event. We're on a list now, so we get called for things like this all the time. This one sounded fun.



PCH is building a brand new tower as an addition to their hospital. It's 11 stories high and has basically changed the Phoenix skyline. It's beautiful...and we got to go inside it!



This event was put on by the Walton family (as in the owns WalMart family) and is traditionally open to PCH's biggest donors. This year it was to celebrate the hope PCH brings to so many families by lighting a Christmas Tree outside the new tower, as well as officially lighting the building. This new tower has these cool LED lights that change color, as well as this rainbow light on what must be the top floor. You can see it from the freeway and it's spectacular. We were actually lucky enough to see a test lighting one night last month as we were driving by on the freeway, so we already had an idea of how amazing it looked.



We were asked to come an hour early (I had no idea why at the time...I just figured it was to give a lot of extra time to make sure we were all there and knew what we were doing.) Then we were ushered way off to a trailer because the donors didn't know we were there, we were going to be a surprise. See, the plan was to light the Christmas Tree while this little girl (who sings like an adult) sang a song. Then each of these PCH patients was to walk up on stage and hang a special ornament on the tree. And, it pretty much went like that...but it wasn't as spectacular as it sounds. The best part was that a girl named Carolyn, who has a rare disease where her bone marrow degenerates, told her story of spending Christmas quarantined in the hospital one year and how her family and the hospital staff went out of their way to make Christmas special for her anyway. And as she told her story and as they lit the tree, you could see the current hospital building in the background, with kids and parents standing in the windows watching and all their lights flickering on and off. It was as if they were having their own lighting celebration and we were all invited...instead of the other way around.



Once everything was lit, and everyone was done talking, we got to go inside the new building (just the lobby)...which was most of the reason I wanted to be part of this event. It was beautiful and shiny and sparkly. All along the walls, there is a strip of mirror at toddler height. So fun. And the elevator bay reminded me of the cruise ship we went on for our honeymoon. You can tell they spent a lot of time really making it beautiful (why didn't I take any pictures of it?! I don't know...silly of me huh?)



We walked around and admired the Christmas Trees they had inside, then we left before our child became too horrible. Her routine had been interrupted and she didn't like that instead of letting her go to sleep, we bundled her up and put her in the car. She screamed the whole way there. In fact, when we got there, there was valet parking (another wonderful feature of PCH that I take advantage of) and they thought we were in the wrong place and that we were looking for the ER! They kept directing and redirecting us, when really we just needed to stop and GET. HER. OUT! All that to say, it was good that we had over an hour to wait when we got there, because Sadie needed a nap! And she got one!! She was so out we had to WAKE HER when it was time to go! But by the time her and daddy had walked up and hung the ornament, she had listened to that little girl with the big voice sing, and she had gone inside where everything was bright and shiny and visually stimulating, she was ready to be done and back asleep.



The whole night seemed a little haphazard and unorganized and people kept apologizing to us for making us wait all the way far away in a trailer, it all seemed a little strange. Then I got an email late Sunday afternoon. We weren't the only surprise that was planned. Kurt Warner (retired AZ Cardinals Quarterback and recent Dancing with the Stars participant) and his wife were also supposed to come out on stage with us. And they had requested to spend that hour-long wait with us in the trailer visiting and taking pictures. Their family has a special needs child (I guess he's an adult now though) and are big supporters of PCH. But apparently at the last minute they had to cancel, leaving everything feeling disjointed and planned wrong.



Although I understand now why we waited where we did and for how long, I am SUPER bummed about not meeting Kurt Warner. I may have been more excited to see him than any of the children in that room. He is definitely one of my heroes and it would have been a great honor to hang out with him and his wife, who are wonderful people (so I hear). And the picture we would have taken with him, would definitely have been something worth framing and hanging in the living room. Someday, Kurt Warner...some.day.