3:21

Today is March 21st, 3/21. For the past 7 years or so, people around the world have been celebrating 3/21 as World Down Syndrome Day. 3/21 was chosen to represent the 3 copies of the 21st chromosome which is the defining marker of Down Syndrome (Trisomy 21). Last year, it was officially recognized by the United Nations, and the awareness of this special day has started to spread in earnest. 

We aren't asking for money. We aren't asking you to walk or run or climb a mountain. We aren't asking you to sign a petition or to call your congressional representative. While those things are helpful in the bigger battle we face in making sure our children and members of the DS community are taken care of and given a voice, that's not what today is about.

World Down Syndrome Day is just a day to learn about and appreciate those among us who carry  this extra chromosome. Down syndrome is a complex genetic condition that carries with it a lot of misunderstanding and outdated stigmas. So, take a minute today to brush up on your facts. Check out the National Down Syndrome Society's efforts to help spread the love (and info) about Down syndrome. 

And while you are at it, maybe throw on a yellow or blue shirt today, write 3:21 on your hand, talk to your kids about what DS is, and spread a little love of your own.

We spread some love this morning at Luke's awesome preschool.

And we represented in our 3:21 gear (the yellow shirts are from Rhyme Clothing and the blue ones were homemade), even though Luke refused to sit for a picture. 3 year olds. Sheesh.

We also had friends, both near and far, help celebrate with us by sporting their yellow and blue. It always makes me feel amazing to see the love on social media as people change their profile pictures, or share a video, or a link helping raise awareness about Down Syndrome. At this point, my feed is full of it. But not so very long ago, I was completely unaware and misinformed about what Down Syndrome is and what it's like to live with it. So when others, who only know because of their connection to Sam, share information with their friends, it makes me so hopeful that Sam will one day live in a world where Down Syndrome is understood and accepted.

If you are looking for a way to share with older children or adults what Down Syndrome is, this video is an excellent tool. Because just like they say in the video, "When you understand, you can accept."



Happy World Down Syndrome Day, everyone!

Doing Something Extra

A couple of weeks ago, we had Sam's 6 month review of his IFSP. As we slowly and methodically went through each goal and desired outcome, it was obvious that Samuel has been really progressing these past 6 months. Some of his goals sounded humorous when paired with our new realities.

For example: Goal = "Samuel will be able to sit up by himself to reach for his toys." Reality = "Samuel can crawl through two rooms, pull himself up and over the side of the bath tub to reach his bath toys."

So, as we went through our plan, I did a few internal fist pumps and then helped draft new goals and modify the ones we were still working on. I was initially hesitant to put much effort or thought behind the IFSP the Early Intervention coordinator made us put together. Our coordinator was wise and thorough with her job, but in those early months when it took all my focus and energy to just breath through every appointment and specialist we saw, I just didn't think what she was doing was important. I was wrong. It's been very helpful and rewarding to make these goals, and I always feel lighter after we check one off.

About thirty minutes into our meeting, Sam's feeding therapist showed up for his session and to add her two cents to his evaluation. This is what I had been waiting for. As I pulled leftover chicken pot pie out of the fridge and grabbed his honey bear cup from the counter, I was pretty giddy. His therapist and I had been discussing Samuel's feeding goals and progress for the past few weeks. Over the past 7 months, Samuel has done a complete 180 with all of his feeding issues with the exception of his aspiration issue, which he is just going to have to grow out of. As I placed his lunch on his tray and joined the meeting again, his therapist was telling our coordinator that Samuel had met all of his goals and she was ready to discharge him from feeding therapy.

!!!!!!

Now, if you haven't been reading along for the past 18 months, you may not quite get the significance of that last sentence. We have been seeing a speech therapist for feeding issues almost since birth. Sam and I have gone through weekly sessions almost every single week since he was 4 months old. The first year was so incredibly frustrating. We tried everything and got no where. Our first therapist felt she had done all she knew to do and dropped us from her case load after about 7 months. Our current therapist picked us up last summer and squeezed a 25 minute window out of her already tight schedule for our weekly visit. I have been so incredibly grateful ever since. Not only does Sam adore her (like, seriously. He's hardcore in love with her.), but she was so helpful in identifying his aspiration issues, which not only helped him drink better, but also kept him so much healthier this winter. She turned around a situation that was leaving me a frustrated, teary mess on my kitchen floor on a daily basis.

Today, Samuel ate yogurt and cheerios for breakfast, followed up with a granola bar for a snack during church. He had part of a peanut butter and jelly sandwich and pureed fruit for lunch. For dinner, he ate broccoli, chicken and rice casserole. Basically, he ate everything else the rest of us did today. 6 months ago, I had no idea that was even going to be possible.

So often, when I get overwhelmed by that extra chromosome, I get lifted up by the amazing people who have come along side us in the journey. The therapists who knock on our door and say, "I can help." The nurses who showed us the way back in the very beginning. The service coordinator who knows what you need and how to get it to you, even when you want to tune her out. The other families who welcomed a child with DS into their homes (who I guarantee did a celebratory fist pump with me a few paragraphs ago) and who have welcomed our family into the club. We aren't alone and I will be forever grateful.

You may have noticed that I recently added the NDSS's Do Something Extra button in the side column. Last year, I blogged for the 21 days leading up to March 21st, which is World Down Syndrome Day. This year, we are still going to be buying our 3:21 shirts and will be doing a couple of other things in the next few weeks. But for today, I think the NDSS's slogan kind of sums up this journey well. As a family that has a member with Down Syndrome, we often have to "do something extra" from typical families. Whether it's the therapy and doctor appointments that crowd our schedules, to the extra minutes we spend on feeding issues, to the extra years we spend working on physical milestones, we are just like normal families...just with a little extra. And this weekend, our "something extra" was a fun one.

When Sam turned 1 back in July, I stressed about how to celebrate around all of his feeding issues. I eventually gave in and made him a cupcake, but he didn't really get to eat it. So this weekend, in honor of Luke's half birthday and Sam's feeding therapy discharge, Travis made cupcakes and we celebrated all over again. This time, he ate the heck out of that cupcake.

(Funnily enough, Luke was really concerned with how "dirty" Sam was getting, so he got a towel out to help clean up.)

Way to go, Sam. You earned that cupcake.

We all did.

Taming of the Tongue

I've been having one of those weeks. The kind where Down Syndrome has me down.

It's been a while since I've had one, mostly because we've been rocking Down Syndrome these past few months (Who hasn't had to wash a bottle in a week since her son learned to drink from a straw?! This Momma! Holla!!). I kind of hoped that maybe I had passed the point of being reduced to this place. But, no. Here I am, crying at my keyboard, needing to get the words out of my head.

It started last weekend, when on a quick trip to Target (an oxymoron, I know) to buy a new, bigger car seat for our growing Sam, I happened to walk past three adults: a mom, a dad, and a grown son. They were hunting for a check out line, and he was trailing behind them. Probably in his early twenties and having all those typical physical characteristics that told me that this young man shared the same diagnosis as my son. I crossed paths with this family for maybe 30 seconds, but by the time I was 20 feet away from them, I was choking back tears.

Nothing sad was happening in this little family. Nothing hard or out of the ordinary was going on. Nobody was paying them any attention but me.

But it turns out, I was the problem. I got choked up because of me. Because of my reaction. Because of what was going on in my head.

And while I have been hesitating for days to put these thoughts into words, I decided today that I needed to. This is where I write about these things. It's hard to bring them up in conversation. The sadness and the pain just seem too heavy to drop into conversations. I don't know how to talk about it with anyone besides Travis. So I hide behind my computer and share my stories here. But that's okay, I think. You've told me you appreciate my honesty, so that's what I'm going to do. I'm going to be honest, even though it makes me so unhappy and sad to admit to this.

Because, as much I would like to tell you that my reaction to seeing this young man was to instantaneously see his worth, the truth of the matter is that it wasn't. I was mean and judgmental and in those first 5 seconds of seeing and recognizing him, I failed to see the beauty in his life. In his existence. All I saw was: he's different. He's walking funny. He's shaped funny. I can't understand what's he saying. He looks stupid.

Oh, how it breaks my heart that I thought those things. "He looks stupid?" Oh, Tori...how could you?

I swear it was only for those first 5 seconds. Maybe even less. And then it clicked. His feet are turned out because his joints are looser. He's short and compact and carries his weight in his lower half. His neck is thicker. He's speech isn't clear and he looks like he's not engaged because he has low muscle tone in his face. He has Down Syndrome.

And then I smiled. "Hey look," I thought, "He's a Sam! He's one of us!"

I watched his family closely for the next few seconds as I walked on towards the baby section, noticing how he was able to point out to his parents which check out lanes had the fewest people, and which one he thought they should go in. He was walking and talking, two things I desperately want for my own son right now, and here was someone who had mastered both of those things. "We'll make it here, too," I thought. "It's all going to be okay eventually."

But then I kept walking, and those first 5 seconds where I didn't see this man as the beautiful testament to all the challenges he's conquered replayed in my head, and caused my eyes to well up. I am that thing I am most afraid of about Samuel's future. I am that person who knows better, but still has a gut reaction that doesn't place value on my son.

I can't tell you the number of individuals I have judged and dismissed as being "different" prior to Samuel coming into our lives. I don't even know if I could have told you I was doing it, it was so subconscious an action. I know I am still guilty of it. Of looking at people and focusing on how we are different, instead of how we are alike.

I'm sad because I know better. I am 18 months into this journey and I have no excuse. I didn't have an excuse 19 months ago, either...but I should know better. I should know better now. Who knows what that family has faced? Maybe he has a scar down his chest like my little boy does. Maybe he spent months and months learning to do things his siblings accomplished without even trying. Maybe he's had countless hospital visits because simple colds that barely phase typical kids can land kids with DS in the hospital for a week.

But even if they have faced none of those things, this young man deserves for me to withhold my judgment and assumptions based solely on his physical appearance. Everyone deserves that. I know we don't live in a society that teaches us to value our fellow man as equals. Especially when it comes to how we look: fat, thin, tall, short, white, black, in style or out. We are taught to judge and label and shove everyone we meet into a box so that it's easier to understand where they fit in our pecking order.

There's this section in Dietrich Bonhoeffer's book, "Life Together," that I've loved ever since I read it in college. He's talking about the "discipline of the tongue" and how if we learn to tame our tongue, we "will be able to cease from constantly scrutinizing the other person, judging him, condemning him, putting him in his particular place where we can gain ascendancy over him and thus doing violence to him as a person. Now we can allow the brother to exist as a completely free person, as God made him to be. Our view expands and, to our amazement  for the first time we see, shining above our brethren, the richness of God's creative glory.God did not make this person as I would have made him. He did not give him to me as a brother for me to dominate and control, but in order that I might find above him the Creator. Now the other person, in the freedom with which he was created, becomes the occasion of joy, whereas before he was only a nuisance and an affliction."

Whenever I try to explain this passage to someone without the book in front of me, I find myself waving my hand around my head, trying to show them where God's creative glory shines. That's how I envisioned it the first time I read it, like if we just stopped looking people in the eye and instead moved our gaze 6 inches north, we would be able to see God. Like our own personal invisible God-halos hovering over everyone's head.

I wish I had been looking above this young man's head last weekend. I wish I could promise Sam that people would only ever see him as an occasion of joy, and never as an affliction. I wish the same for Luke. For you. For me. That we would only ever see each other as an occasion for joy, created in God's image. I loved this passage 10 years ago when I was struggling to understand who God was, and I love it today, when I'm struggling to understand how to protect my child from a world that I am afraid will often see him as an affliction.

I spend so much of my day to day life focused on helping Sam through the milestones of early childhood: the sitting, the eating, the walking, the talking...the learning of how to navigate this world physically. For the past year, these have been my biggest concerns. It's easy to focus on this stuff and push our future aside in my mind. I just keep thinking that it will only get easier as we check off these goals. That once he's walking and talking and more independent, then maybe I will get a break and it won't seem so daunting.

But after this weekend, I don't know. It seems like there will always be another battle fight. Maybe even if it's only within myself.

Valentine's Posters

Our guest bath has always been a thorn in my side as far as decorating goes. I hate the paint color, but not as much as I hate painting a bathroom. I've never been happy with any color bath linens I've tried in there, and I picked out random pictures during our first month of living here to hang on the wall. It's been a decorating failure for me for a long time.

Over the past year, we've painted a few different rooms and our hallway. I like the new colors a lot better, and I'm almost ready to tackle changing the color of the guest bathroom and repainting our living room/dining room area. When I finally got around to hanging pictures back up in the hallway and our bedroom, I decided to use our new printer to come up with a few extra art pieces to throw into the collage I put in our bedroom. I had a lot of fun browsing around and taking inspiration from things I saw on pinterest. I really liked the end result in our room, so I wanted to use it in other areas of our house.

So, I bought three cheap black 8.5x11 document frames to hang in the guest bath. I've been changing out the posters for the fall and for Christmas. Now, instead of hating the way the room looks every time I go in there, those three frames make me smile. I still need to paint in there and finally figure out what to do with the mammoth mirror and light fixture, but that's beyond my decorating talents for now.

Anyway, all that to say: Here's my three posters for Valentine's day. Let me know in the comments if you'd like a print without a copyright.

Christmas 2012

Scene:
Earlier this evening, everyone in the car. Christmas music playing, boys wrapped in blankets, hot cocoa and cookies in hand. Driving around looking for ridiculously decorated lawns that make us all gasp. Luke has been pointing out every "Frosty" and "Santa" and "Baby Jesus" he's seen. We come to a stop sign and have to decide whether or not to leave our neighborhood to check out more lights.

Travis: So, Luke. Do you want to find more lights?
Luke: Nope.
Travis: Nope?! You don't want to see any more lights?
Luke: Nope.
Travis: Don't you like the lights, Luke?
Luke: Nope. I want to go home.


Aaaaand....scene.

To his credit, he's has a cold since Thursday, and woke up from his nap today with his eyes glued shut with his very first case of Pink Eye. We persevered and traveled around for another 15 minutes or so, before he let us know that he really did want to go home. Poor guy. We are on lock down until the antibiotics kick in, hopefully in time for our early morning flight to Utah Tuesday morning.

I was thinking earlier this week about how I often don't sit down and carve out the time to write unless my world is in chaos or my heart is heavy. It makes for pretty unbalanced reporting on the state of my union. So today, despite Pink Eye and snotty noses, an update on how my boys have rocked this past month.

Knock on every piece of wood you can find, but I think we have finally left the Terrible Two's behind with Luke. He is talking constantly now, and I think it has eased some of his communication frustrations. We are at like 1-2 time outs a week instead of 1-2 every half hour. The change was gradual, but looking back, he's like a completely different kid. He's funny and sweet and has manners. His imaginative play has taken off and he's constantly warning you that a shark is going to bite your toes or that a ghost is hiding in the closet. He was convinced for a week that a Mr. Turkey was actually going to show up on Thanksgiving Day. And even though we don't talk about it much or push it with him, he can talk all day about Santa and reindeer and Frosty the snowman. I can't wait for him to experience Christmas.

As for Sam, well, check this out:


If you ask him to say Mama, he'll say Dada. Ask for Dada, and he'll say Mama. And then he laughs. He's like a comedian with only one joke. He's still only just imitating sounds, but considering how long we had to wait for Luke to start talking, Sam seems right on track for us.
He's eating like a champ, an all-star, amazing, super, awesome champ. Quite frankly, he's eating better and more well rounded meals than anyone else in this house. It has been my best Christmas present, by far. Although, it is tough to compete with the all-clear we were given this week from his cardiologist. For the first time since the day he was born, we don't have a single cardiology appointment on our calender. He got moved from 3 month check-ups to yearly, and we couldn't be more excited. His post-op murmur closed up and all the results from his EKG and ultrasound were great. We will check in on his pacemaker the week after Christmas, but we don't expect to learn anything new at that appointment.

2012 is a year that started off rough for us, dealing with all of Sam's health issues, the daily hourly battles of will with Luke, and all of us adjusting to the changes with work for Travis and I. But we are ending on a high note. So let's leave it at that.

Glory to God in the Highest, and on Earth peace, Goodwill toward all Men.
Merry Christmas.

31

So last year, I obviously had a lot more on my plate than I could deal with when November 10th rolled around and I forgot to take my picture. This year it was easy to kiss my boys goodnight and walk out the door for a date night with my cute husband. That means it's time to restore the tradition.

31 today. 

I need a nap.

(Also, one day I will learn to look at the camera when taking pictures in the mirror and not myself so that I don't end up looking like I'm staring off into the middle distance every single year.)

(Maybe. But probably only if I get a nap some time between 31 and 32.)

(That's not likely either.)

October 2012: So Much Better

For the past couple of weeks, I've sat down to write at night, collected photos and links and videos, opened my blank post and stared at the blinking cursor. I'd start paragraphs over and over, but always ended up stomping on the backspace button until they disappeared.

I think it's because all I've been able to think about the past few weeks is where we were a year ago. October 12th was Sam's one year anniversary of his open heart surgery, and just yesterday, we passed the pacemaker installation one year mark. I've sat down to write about it and invariably ended up reading through the posts from a year ago. And every time I'd click through those posts, it was like I was reliving it all over again. That awful day we handed him over looking healthy and perfect, only to receive him back a few hours later, swollen, intubated, and scarred. The day they started taking the machines and medicines away. The days we went on and off the external pacemaker, riding a rollercoaster I hated. The scary moments and the happy moments. The facing of the inevitable decision to get a permanent pacemaker. Watching him head off into another operating room. The joy of holding my baby unhooked from all the monitors and wires.

After torturing myself for a few nights, I finally just stopped trying to reflect on this time last year. I'm obviously not ready to go there yet. It was an awful, dark time and even now, it makes tears well up in my eyes thinking about it.

But we are here. Not there anymore. We are a year later, with a healthy boy who is growing and learning and thriving. And I'm just so damn grateful. It's been shockingly easy for me to lose that perspective during these months of doctor appointments and therapy sessions and a hectic schedule. But our story could have had a much more tragic ending than it did, and it's really been hammered back into my head/heart these past weeks as I've journeyed back to those hospital rooms in my mind.

So.

Anyway. While I've been going through a little PTSD, you've missed so much! October has been an amazing month for us. Let's try to hit the highlights and catch you up.

1. We started with a bang, participiating in our first Buddy Walk. As a team, Sam's Club raised $1,350, and all totaled the Down Syndrome Association of Greater Charlotte raised over $195,000! That is amazing. Thank you so much for supporting us, with your money, with your presence, and with your love. We had a great time and loved getting to participate. I did a super bad job taking photographs, so...That's a goal for next year.

2. We hit the beach for a short vacation the following week while Grandma Lori was still in town. I am now a October beach-goer convert. We had such a fabulous time. The weather was amazing, the water warm, the beaches clear, and all around just perfect. Luke ate ice cream willing for the first time and cemented his great love for the beach, and I tried very hard not to freak out when Sam insisted on eating sand. I also did a bad job of taking pictures, so again, just trust me on that one.

I did, however, just discover this one from Luke's first day of preschool. I tried to take one of those "First Day of School" photos like Pinterest demanded I do, but Luke was just not having it. I had to chase him down the driveway just to get this one. Isn't this the saddest picture ever? Oh Luke. The stories we will be able to tell your kids some day...

3.This happened.

4. So did this.

5. Oh, and um, this.

Basically, Sam just rocked October hard. He learned to sit up by himself, army crawl, and has for the past two weeks, been eating almost completely age-appropriate. He can self feed puffs and yogurt bites, and can eat bananas and toast, and will (finally) eat purees willingly. (pleasepleaseplease don't let me have just jinxed myself by bragging on him. Would you knock on the nearest piece of wood? Twice? Thanks.)

7. Luke really got what Halloween was all about for the first time this year. He wasn't wild about dressing up, and for weeks prior to the big day, our conversation went like this:

Me: Luke, what do you want to be for Halloween?

Luke: A cupcake!

Me: No, not what do you want for Halloween...what do you want to dress up like?

Luke: A cupcake!

Finally, last week, we had a breakthrough.

Me: Luke, what do you want to be for Halloween?

Luke: Hmmmm. A Cupcake Pirate!

Me: Close enough.

Sam didn't seem to have any preference about his costume. So, we dressed our little army crawler up like... well, an Army Crawler.

And with that, we are all caught up. This October? So much better.