Facing Mortality

Thursday, April 16, 2015
I've never enjoyed spring. I have no idea if it is a sub conscience negative association or just the change in lifestyle but, whatever the reason, the seasonal shift tends to make me anxious. Somewhere around  May I return to my normal. This year is different. For the first time I'm finding myself loving everything about the season, even the change. Or maybe especially the change. I feel like for a long time there has been so much darkness. The grayness is not just outside my window. This week I have been facing the uncomfortable reality of human mortality. On the same day I'm rejoicing in the marriage of a friend on the west coast a friend on the opposite side of the country shared the news of his stage four cancer. Guys, that make you realize how fleeting time is. When you are so focused on making it through today it's hard to see the eternal perspective. Seeing trees, which only days ago were nothing but bare branches, come to life does something to the spirit. There is a sense of refreshment in stepping outside and feeling the sun warm your bare skin. Life is short. This present trial cannot last forever. What now seems all consuming looses significance when you consider our eternal destiny. Take heart. Feel the sun. And carry on. Another day awaits.

When Mistakes Happen

Thursday, April 9, 2015
...because mistakes do happen...and yesterday I make a whopper of one.

So I went to park the van. The parking lot was narrow so I was already nervous but then this car pulled up behind me with a clearly impatient driver and I misjudged the distance and hit the car next to me while pulling into the spot. If I was nervous before, my state at this point was complete panic. It was not my finest moment. There did not appear to be any damage to the other car (the poor van suffered a huge dent...darn plastic cars...). I had no idea how I could locate the owner so I pulled around the building where there were several, wide open spots and parked.

Later I got a call. From the owner. Who turned out to be an acquaintance of my mom's. Apparently the impatient driver had contacted the owner and told her I "repeatedly rammed into her car." What??? Thankfully, because the owner knew my mom, she decided to contact us instead of the police or insurance company.

And that is the story of my first ever motor vehicle accident. It is not an experience I wish to repeat.

Mistakes happen, especially when you get the notion to drive around several tons of cheap metal. And while I would like to go back and rewrite the whole day, it's almost (almost) worth the uncomfortable experience if from this I learn the lessons necessary to do better next time. Lessons like...

Always, always make things right. Although I feel the person who contacted the owner was unfair and malicious in his/her description, I am so glad he or she did contact the owner. It gave me a chance to apologize and makes things right. Because, mistake of not, I did something wrong that hurt this woman's brand-spanking-new car. And, silly as it may seem, it would have nagged at me for a long time if I had not had a chance to make it right.

There are some really great people in this world. The owner was so super kind and forgiving...which really is a good thing because if she has been hard...as she had every right to be...I would have crawled into a hole that would have taken more than yoga pants and Emma's ham and bean soup from which to revive me. And then my parents were so helpful and understanding...despite my wrecking their van.

There are some really nasty people in this world. Like the witness. It was one thing to notify the owner. It's another things to tell such an exaggerated falsehood because they had a bee in their bonnet. And that lie really hurt. I know I have hurt people through carelessness or lack of thought but I have never tried intentionally to hurt someone and that someone would think I would really hurts. There are mean people in the world who enjoy stirring up trouble. You can't take is personally. Accept that's who they are and resolve to be different.

Don't allow yourself to be bullied or pressured into a poor decision by other people's impatience. You're the one who is going to have to live with your choice. Take all the time you need to consider. It could save a poor car's bumper.

God gives grace (even when we act stupid). Seriously, what are the chances of me "just so happening" to park next to a car that "just so happened" to belong to an acquaintance out of the probably one hundred cars in the lot? God is good.

And last, but definitely not least, if you drive a fifteen passenger, boat of a van...park far away from other vehicles. Let's face it, we can't all have my mom's talent of, as my aunt so well put it, "being able to parallel park a Mac truck in a motorcycle space."

Easter Sunday

Tuesday, April 7, 2015
Hello, friends! Hope you had a lovely Easter! Between a super busy week and uncertain weather I was a little nervous about hosting thirty guests. God was good! From a wonderful worship service to perfect egg hunt weather and amazing food and friends, I really couldn't have asked for better. I feel you can be a lot bolder with the color scheme at Easter and I'm very happy with the table design. Per usual, we served both an Easter and Passover menu...you got it, ham and lamb side by side...okay, so maybe not Kosher but delicious none the less. And of course, the kids are the best. Easter is definitely a kid holiday. We let them eat all the sugar they can lay hands on and in exchange they look cute in their clothes and hunt the eggs...win, win. Thankful for a beautiful day and the people I was able to spend it with!

“If man had his way, the plan of redemption would be an endless and bloody conflict. In reality, salvation was bought not by Jesus' fist, but by His nail-pierced hands; not by muscle but by love; not by vengeance but by forgiveness; not by force but by sacrifice. Jesus Christ our Lord surrendered in order that He might win; He destroyed His enemies by dying for them and conquered death by allowing death to conquer Him.” -A.W. Tozer

7 Life Goals (You Probably Didn't Know)

Thursday, April 2, 2015
...because every once in a while it's nice to have a getting-to-know-each-other post...and just in case you had any questions about my normality. The random, bizarre and uncommon (by no means my top seven or most important...)...in no particular order...

1. Hold a beating human heart. I swear, I'm not a total creep...but could there be anything more amazing? We devote so much time to studying this magnificent machine. Seeing it in action would be simply thrilling.

2. Never weigh more than my significant other. Guys, you've gotta have standards.

3. Work at Disney World. If WDW was not located in Florida (I wilt in the heat) I would give up this doctoring idea and seek Disney employment. I mean, come on. It's the happiest place on earth, for crying out loud!

4. Host a black tie event. Mr. Carson is my hero. I love planning events. The more formal and elegant, the better.

5. Be a single, adoptive mommy. Because, adoption is a beautiful thing. And, you know...I promised my dear mother grandchildren.

6. Own a manor/estate and find a way to make it an integral part of the community. Ie. have an excuse to have a totally excessive home because it's actually worthwhile. Not because I necessarily like big houses (I don't) but an estate would be so convenient when hosting parties.

7. Read the complete works of Shakespeare and be able to quote portions.  Not the biggest Shakespeare fan but, I've gotta say, it makes for some pretty awesome cocktail chat.

And there you have it! Enough about me. Tell me...what are some of your life goals?

Deep Creek Lake

Friday, March 27, 2015

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.

Good Days, Bad Days

Tuesday, March 24, 2015
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!

So Proud

Thursday, March 19, 2015
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.

The one about casseroles.

Tuesday, February 24, 2015
Since Addison was born my family life has been pretty crazy. First there was the initial shock and adjustment that comes from welcoming a baby with special needs. Shortly after we began to adjust to our new normal we were inducted into the community of families of children with complex medical concerns. Nothing can prepare you for this life. It's chaotic and unpredictable. And without the support of the amazing people surrounding us there is no way we would have made it these past two years.

The second most common question we hear, right after "How is Addison?", is "What can I do to help?",  followed quickly by, "Can I bring a meal?"  The meal question is typically directed at one of my grown siblings or myself by dear friends who don't want to burden my mom. I always hesitate before replying, "A meal would be lovely. How about next Tuesday?" 

I hesitate because I don't want to accept. Nagging at the back of my mind is a feeling of guilt. We don't need a meal. Realistically, my father or pretty much any of my siblings could pull together a meal, from the grocery store shelves to the dinner table, in less time than you would take you to calculate just how many times to multiply that recipe to feed a family of eleven. It doesn't make sense for someone else to invest their time and resources into something that I don't perceive as a help to us or Addison (the child doesn't even eat, for crying out loud!).

And then I'm reminded of this simple truth: it isn't all about us. Serving is every bit as much about the server as the served. Our friends love us. They love Addison. And sometimes prayer isn't enough. I speak as someone who has been on both sides. When people you love are hurting you need a means much more tangible than prayer to help. I'm not knocking prayer. There is nothing as helpful or effective as prayer. But I also know the joy from pouring yourself into creating something and the satisfaction of using your hands to serve a hurting friend and maybe, just maybe, make their troubles a little more bearable. Who am I to take that away from someone?

So I nod my head. "A casserole would be lovely. How about next Tuesday?"

Keep the prayers (and casseroles) coming.