Friday, March 27, 2015

Deep Creek Lake

Contrary to popular belief, I do occasionally write a post in which Addison is not the main topic. I know you guys only hang around to see Henry photos but humor me here and pretend this blog could exist without the Beeg. (I totally just used three names for one person in the first paragraph...this post is shaping up nicely.)

I have this fascination with ski resorts. I blame James Bond and the Pink Panther. In Western Maryland there is this tiny ski town known as Deep Creek Lake. Despite the confusing name (still trying to figure that one out) it's pretty much perfect. It's so middle of nowhere there isn't even cell service but it only takes five minutes to reach a grocery store or coffee shop (I try to not think about how far the nearest hospital is.) My family visited for the first time last March, instantly fell in love and made plans to return for my mom's birthday. February 5th we packed our sweaters and snow gear and hit the road.
Traveling buddies! This row totally rocks the van.

An essential part of any trip is good food. Fortunately there's Brenda's. Guys, this place is awesome.
Not only is their pizza 110% amazing (and this is coming from a snooty Italian)...
You get to eat with this beautiful view of the lake. Win, win situation.
Of course the main reason for the trip was to celebrate my mom's birthday. After bugging her for weeks to give me a theme to work with I finally just decided to match the presents and decor to the scenery. Because that's what everyone does, right? I love the vintage Putz houses but they are hard to find so I ended up just making my own...which was so much fun and I love the way it came out. The wrapping paper, brush trees and miniature deer and skiers are all from Etsy.
For the record, fair isle and moose pajamas are absolutely essential to a weekend in the mountains.
Despite out little people population being too high to participate in skiing and snowboarding we thoroughly enjoy the outdoors. There is sledding...
Snow man building...
Exploring the woods...
And braving thin ice...
 Basically we love snow, cold and winter.
 Which doesn't mean we don't enjoy the indoors...
Guys, even the architecture screams ski resort.
With movies and countless card games...
A  perfect spades hand. I bid seven.
And of course snacking.
The boys spent pretty much the whole weekend throwing darts...
 And I spent pretty much the whole weekend sleeping in this chair by the fireplace. 
Okay, so I like napping.
 And (despite worry over Addison's persistent weight loss...which reminded us life with Henry is 24/7/365) a lovely (for the most part) time was had by all.

Tuesday, March 24, 2015

Good Days, Bad Days

There are really good days. Like when it's 60 degrees and you take your little buddies to the park and for ice cream, go for a stellar run, serve a gourmet dinner and spend the evening chilling with your not-so-little fifteen year old sister.

And then there are bad days. Like when your father wakes you at 2:00 AM and tells you to drive him to the hospital because he has acute abdominal pain and you're thinking "Oh my gosh, he has appendicitis!" and it just so happens to be the day your mom and three of your brothers are in Connecticut for the aforementioned brother's surgeries and you have three little kids you're looking after who are already under a lot of stress and really don't need you taking off in the middle of the night on top of everything else and there you are spending the night in the ER.

On the good days you thank God because really you don't deserve so much goodness.

And on the bad days you eat comfort food and try to take everything in stride. And somehow, as much as you don't feel it, you thank God. You thank him for the ability to sleep anywhere...even in a noisy ER in a back breaking chair. You thank him that you're an old pro at operating on two hours sleep and can drive safely. You thank him it was not appendicitis and your father is being treated at home. You thank Him for the privilege of living today.

Recently there have been a lot of bad days.

I hate running up hills. I do it because I live in a hill infested area. Sometimes the only motivation to keep going up the hill is the other side. It hurts now. But it won't last forever. And the other side will be all the easier because the struggle.

So I thank God for the hills. And eat the dratted comfort food.

Monday, March 23, 2015


Running is physically and emotionally taxing. To gain endurance it requires discipline and time. When we run we are reminded nothing comes easy for Addison. He has fought for every milestone he has achieved and will struggle for the rest of his life. Yet he continues to endure, to move forward and to inspire all he comes in contact with. Addison's team is comprised of people dedicated to helping him overcome his challenges and reach his greatest potential.

One voice, one vision....celebrating Down syndrome in the DC metropolitan area.

The Race4Respect™, presented by KOONS of Silver Spring, is a 5K & 1K Kids Dash in Washington, DC. Join us on Saturday, May 30, 2015, for the second annual Race4Respect™, one of the most coveted 5K courses in the DC metro area! Run in the shadow of the nation's capital, the Washington Monument and many other DC treasures. The Race4Respect™ is a collaborative project led by devenio, inc. and eight Down syndrome affiliate groups in the DC metro area and surrounding regions including Frederick, Baltimore, Annapolis, Southern Maryland and Richmond. Expected attendance is 2000 runners.

The mission of Race4Respect™ is to build community partnerships with the goal of increasing Down syndrome awareness. We believe that if given the chance to experience an event with a person with Down syndrome or another disability, negative stereotypes, barriers and judgments can be overcome.

Click here for more details.

To join Henry's team, visit the Race4Respect website, click on the register button, select "Join an Existing Team" and choose Re:Henry - We are INTREPID. Discount for early sign-up ends 4/15.

Saturday, March 21, 2015


I have heard so many testimonies of families receiving their child's diagnosis of Down Syndrome. And they all begin with "I'm sorry." My family and I spent the first week of Henry's life crying. It's not something I'm proud of. We had accepted the lie of our culture that Down Syndrome is a bad thing and that horrible lie stole the joy of welcoming our boy.
Today, March 21st, is World Down Syndrome Day. A day set aside to celebrate the wonderful gift of Down Syndrome!

Down Syndrome is not who Henry is but it's a part of who he is. A beautiful part worth celebrating! Henry is fearfully and wonderfully made. Imago Dei. The very image of his Creator. And Down Syndrome is a tool with which he has been equipped to change the world.
Let's celebrate today and everyday so never again will a baby be welcomed with tears of sorrow. Let's celebrate so mammas will choose life for their unborn babies with Down Syndrome. Let's celebrate to show the world what a bright future Henry has!
totally intentional...this image has not been flipped :)
Join me today as I celebrate the blessing of Down Syndrome!

Thursday, March 19, 2015

So Proud

Henry will soon be two. And he cannot walk. He cannot crawl. He cannot eat. He cannot talk. He will be spending his second birthday in appointments with doctors and therapists. 

I will forever remember the night my parents told my sisters and I about Henry's diagnosis of Down Syndrome. One of the first things we did was pull out "What to Expect the First Year" and make all these little charts of what he should be doing when so we would be able to compare his progress with that of his peers. For the first six months we would faithfully measure milestones on our little charts. We jumped for joy when every month he was right on target. Then progress stopped. Eighteen months later, despite countless hours of therapy, here we are with no significant progress. We no longer look at those charts. 

Several months ago I had this dream. We were at Keys' stadium and there was Henry, walking along that narrow walkway behind the seats, wearing his little grey stripe overalls. On his face was the most beautiful, triumphant smile. He was walking. My dream continues to remain a dream. A fantasy of my imagination.

We were visiting a church on vacation. I was holding Henry. A lady approached me, commented on how sweet Henry was and asked his age. When I replied he was almost two her face fell. "Oh." There was so much behind that small word. 

Henry is almost two and people are starting to notice he is not like every other two year old. 

Tonight as I tucked Henry in bed I whispered, "I'm proud of you." 

Henry will soon be two. And he has fought for everything he has accomplished. He has touched hundred of lives as evidenced by the stackes of letters and emails we have accumulated in his two years. Despite his limitations he is changing the world. 

I am so proud.