Sunday, March 30, 2014

Today I run.

This morning before the sun comes up I will roll out of bed and drive the forty-five minute drive to our nation's capital. To run. To run my first 5k. For Down Syndrome. (But really for Henry.)

These past three months of training have been huge. I am running faster, harder, longer stretches than I ever have (5 kilometers, 3.11 miles, non stop). Though I have grumbled and complained (almost without fail) before each training run these months, this training, has been so good for me. Physically it has revived my body. But more importantly it has been reviving my spirit. My perseverance has increased with each hill. My resolve has strengthened each time I tied on my trusty Asics. My endurance has increased every time I wanted to turn back but kept going. The training was for me. I needed it, physically and spiritually.

But today, this run, is for Henry.  To be his sister, cheer leader, therapist, advocate, guardian...and friend I will need strength to push him when he wants to quit. Resolved to never tolerate any less than the best. And endurance to stick with him through thick and thin.

To Henry, the only boy who can get me out of bed before dawn on a Sunday morning, this one's for you.

Friday, March 28, 2014

Baby Shower x 3

If spring is baby season than February is baby shower season. Or at least this year when is seems everyone is expecting. We have three dear friends due in March, April and May. Since they all knew each other we thought it would be fun to host a 3x baby shower. And that is exactly what we did February 20th at a local cafe. 

Our colors were purple, gray and green. I detest typical baby colors and typical neutral baby colors even more. These colors, on the other hand, make me happy. 

I have this thing about invites. And I have this even bigger thing about handmade invites. There are few things I appreciate as much as a well designed invite. And big bonus points if you throw in some twine. Consequently, we spent two Saturdays working on these invites. Totally worth it. They came out so pretty and still makes me happy when I look at them.
We made blessing cards for guests to share prayers and wishes for mom and baby. We tied the invites and blessing cards together with this fabulous purple striped twine from Sweet Love Fun.

The centerpieces were harder. Centerpieces for long tables are always a challenge. I tossed around several ideas and finally settled on this just a week before the baby shower. I found these awesome gray scarves on eBay for less than $2 each. Perfect, oh-so-affordable table runner.
We made the pennants with skewers and washi tape and put them in parfait glassed filled with silver table scatter. The card holders were leftover from a dinner we decorated for last year. We made cards to display on the with prayer requests for mom and baby.
We finished the table decor off with purple decoupaged candle holders, the party favors and purple rhinestone table scatter. 
The cupcakes were MAGNIFICENT! I just adore Sam's Club's chocolate cupcakes with whipped chocolate icing. Why bother making our own when you can buy something this good? We asked all three ladies what kind of cupcakes they would like and they all said chocolate with chocolate icing. I knew there was a reason I loved these women :)
We decorated the cupcakes with sugar sprinkles in our theme colors and small pennants made from toothpicks and, you guessed it, washi tape. Let's just say washi tape played a BIG part in this party.
It was our hope this baby shower would be a time of celebrating these new lives and a time of prayer for Mom and baby as they embark on such a big adventure. On each favor we tied a card with a prayer. We began the shower by going around the room praying the prayer our favors. The plan was everyone would take their favors home and continue to prayer the prayer attached. Prayers really do make such a difference!
The favors themselves were chocolate dipped marshmallows. YUM! I am not a big fan of marshmallows but dip them in chocolate (for that matter dip pretty much anything in chocolate) and I go slightly crazy.
Emma designed this awesome banner on her Cricut. 
Remember the blessing cards in the invites? We set up a table with a jars for people to put the blessing cards. I designed the tags and we embellished with twine and WASHI TAPE (what else?).
The outcome? We had  a beautiful time of prayer. And a large turnout. And the employees told us they had never seen the room looking so lovely. And almost all the guests said they had a great time. Win, win, win. 

The three lovely mother's themselves... (Seriously, I hope if I ever have a baby I can manage to be as beautiful and stylish as these ladies are.)
It was kinda surreal to be celebrating in the same place with many of the same people we had celebrated Addison's baby shower less than a year ago. How much God has worked and we have all changed in the past year!

By way of epilogue, baby Nehemiah (mother pictured on the far right) was born the second week of March and is just so sweet and tiny. Can't wait to meet all three kiddos and watch them grow!

Cheers,
näna

Friday, March 21, 2014

World Down Syndrome Day - Practical Advocacy

March 21. 3/21.

As in 3, 21s. 

As in 3 copies of the 21st chromosome.

Trisomy 21. Also known as Down Syndrome

In the past year I have been introduced to a world I never thought I would be a part of. The world of Down Syndrome advocacy. I love this cause and am so happy to be a part of this world. However, when Addison was first born, I will admit, I was a bit overwhelmed. I loved my brother, all 47 chromosomes. Through loving him I came to love Down Syndrome.  But I wasn't sure what I could do to support this cause. Maybe you are where I was. Wanting to help but clueless where to begin. In honor of World Down Syndrome Day, I would like to share with you practical ways to make a positive change for Down Syndrome.
-ONE-
Educate Yourself
Ignorance is the #1 enemy of Down Syndrome. Outdated and inaccurate information is everywhere. So few people realize the potential of people with Down Syndrome. Ever fewer people know the amazing things people with Down Syndrome are doing. And rarely is anyone made aware of the shocking number of babies prenatally diagnosed with Down Syndrome aborted...95%. Knowledge is power. Read mementos written by people with Down Syndrome and their families (I strongly recommend Raising Henry, Expecting AdamGifts and A Special Kind of Hero). I have a Pinterest board full of resources, stories, photos and quotes about Down Syndrome and there are many other boards like it on Pinterest.  Around the web there are many blogs written by parents of children with Down Syndrome (two favorites: Noah's Dad and My Name is Sarah). Groups such as NDSS, Global Down Syndrome Foundation and IDSC have great websites packed with articles and information. 

-TWO-
Educate Others
When talking to people I have noticed a hesitance to say "Down Syndrome" in conversation. I believe it is because people are so afraid of saying the wrong thing and offending someone. To break the ice, I try to say the Down Syndrome for them...it makes it less awkward. When I'm open about it they follow suit and you can see their mental sigh of relief. The important thing is: we're talking about Down Syndrome. They are learning, I'm learning. We're swapping stories and facts. We're educating each other and, hopefully, they walk away feeling more positive and comfortable with Down Syndrome. As you share with others what you are learning about Down Syndrome their view is changing and those stereotypes are fading away as they learn the reality. If you feel uncomfortable talking about Down Syndrome I would recommended check out this guide put out by the Canadian Down Syndrome Society. It contains brief, simple guidelines for proper terminology when talking about Down Syndrome. NOTE: At the same time, please don't take offence if someone uses a word or term you don't consider kind. Hear them out and listen to their heart before you judge their speech.

-THREE-
HELP A FAMILY
Therapy is so vital to the development of a child with Down Syndrome. Addison spends three hours a day in intense therapy. Fortunately, there are enough of us to help him that it is manageable. However, that is not the case for all families. In most families the mother is doing everything by herself. That's a big strain, especially if there are other children at home. Why not volunteer to assist with therapy every so often? Or babysit siblings so mom can work one on one with the child? Or babysit all the kids and give the mom a brake? You are helping a child to reach their full potential and therefore helping write another success story for the world to read.

-FOUR-
RUN/WALK FOR DOWN SYNDROME
March 30th I will be running my very first 5k race and my first race for Down Syndrome awareness. As I have been training over the past several months (in the cold) "Why am I doing this?" has crossed my mind more than once. The short answer is, for Henry. But how will this run help Henry or Down Syndrome? That answer is a little longer. The funds raised from entry fees will be given to several wonderful Down Syndrome Advocacy groups in the area. More importantly, as hundreds of people are running down Pennsylvania Avenue people will notice. And their curiosity and interest will be sparked. We will be making people aware of Down Syndrome and showing the world people care and are willing to stand up for the rights of people with Down Syndrome. And that is advocacy at it's best. If you are a runner and interested in using your hobby for a good cause, Active.com and other similar websites have search engines for finding races for various causes in your area.

-FIVE-
SUPPORT POSITIVE LEGISLATION
This past month a very important bill was presented before the Maryland senate. A Down Syndrome pro-information bill requiring healthcare providers who diagnose children, pre and postnatal, to give parents accurate and up-to-date information. This is HUGE! Do you know how many lives could be saved by this bill? How many lives could be changed? How many parents would be able to celebrate their child's birth instead of being depressed and bogged down by harmful, outdated, stereotypical information doctors are giving them? If you live in the U.S. you, like me, have the privilege of being able to be actively involved with the law making process. You can help positive laws be passed by contacting your representative and expressing your opinion, lobbying and sharing testimonies and stories.  Pay attention and when bills (such as the DS pro-information bill) are presented do whatever you possibly can to make them law. Keep in mind any bill encompassing special needs and disabilities will effect people with Down Syndrome. Websites such as GovTrack.us are great for find and keeping up with federal bills. Many state governments have similar websites such as the Maryland General Assembly website.

-SIX-
SILENT ADVOCACY
It doesn't seem like much but simply wearing clothing or jewelry supporting Down Syndrome raises awareness. People will ask you questions thus giving you an "in" for sharing the realities of Down Syndrome (see point two). I have a blue and yellow Down Syndrome awareness bracelet my mom gave me for Christmas I wear almost every time I leave the house. Even my dad wears a bracelet with the DS awareness ribbon and was quite distressed when he couldn't find it last week. Again, it doesn't seem like much but it gives you a chance to talk about Down Syndrome and show you care. And that is big.

-SEVEN-
JOIN AN ADVOCACY GROUP
I am privileged to be a part of F.R.I.E.N.D.S. an amazing, active Down Syndrome advocacy group based in my county. They are a group of awesome people who care so much and are doing great things for the Down Syndrome community. Each year they host a Buddy Walk, a conference for sharing with educators how to teach children with Down Syndrome and many other events. They are actively involved with legislation, fundraising and providing support for people with Down Syndrome and their families. There are such groups all throughout the country. Find one near you and get involved. If nothing else, it's a great chance to meet people with Down Syndrome and see who they really are...people. People with amazing more potential than you or I can comprehend.

These are only a few of the many, many idea out there. I would love to hear your idea and how you have been involved with advocacy...for Down Syndrome or any cause!

On that note, happy World Down Syndrome Day! Please remember today isn't just about advocacy...it's about CELEBRATING Down Syndrome and the wonderful GIFT it is.

And now, for your viewing pleasure, a video of Henry pictures in honor of WDSD. Because I wanted to fill this post with Henry pictures but couldn't narrow it down to just a few. :)

Cheers!
näna

Monday, March 17, 2014

The Henry Ford Museum

third and final part of the michigan trip...oh, yes, i just finished a series...first time for me...hey, you take the small victories.

So we found ourselves in Detroit for a few days and, really, what is there to do in Detroit except cars? And that is how I ended up at the Henry Ford museum. I entered the museum expecting an air/space type museum. Basically cars and planes. I thought I would enjoy my brothers' excitement over the museum more than the museum itself. As it turns out, I was wrong. There were trains, planes and automobiles (which happens to also be the title of a hysterical Steve Martin and John Candy film) and lots of them. But there was so much more and even the planes, trains and automobiles were presented in such as way as to fascinate even those who don't know the first thing about engines (see also: me). The president motorcade, from Roosevelt's buggy to Clinton's limo, including the car in which President Kennedy was assassinated, was amazing. The Civil rights display was moving. I loved the nostalgia of the the traveling America display. And I haven't even mentioned the beautiful architecture of the museum and surrounding buildings. So much to see I really could have spent two or three days.

In conclusion to the Michigan trip, four tips for anyone visiting Detroit: 1. do not attempt putting on lipstick while driving...I'm telling you, Detroit has the bumpiest roads in America, 2. if you need a place to stay, crash Brandon and Julianne's apartment and tell them the Wachters sent you, 3. don't count on the scenery (there really isn't any) and 4. visit the Henry Ford Museum...well worth your time.

Cheers,
näna

Friday, February 28, 2014

In which I cry during a wedding.

nabbed this from Julianne's blog...photo credit to their amazing photographer
Remember the Detroit trip part one? Here's part two... 

Of course, the whole point of the trek to Michigan was the wedding. The wedding in which my dear friend Julianne married the love of her life and they began their happily every after. And if the wedding is to be trusted as any indicator, their happily ever after is going to be incredible. Everything about the occasion was perfect. Witnessing two people who love each other like crazy (and love Jesus even more) come together for a lifetime is nothing short of beautiful. Every detail of the day reflected so well their love for Jesus, their love for their family and their love for living life. The ceremony was a testimony of His incredible work in their lives. The reception a celebration of what was yet to come. Even the salmon was perfectly cooked (three cheers for caterers who cook salmon properly!). Julianne was the most elegant bride I have ever seen. Addison charmed all the guest. Sam rocked the dance floor (and proudly told me later that he danced with both the bride and the groom). Mom befriended the waitress (she does that).

For me, half the fun of any wedding is discussing it afterward. After a wedding my mom and I love to rehash every aspect of a wedding, complimenting the triumphs and correcting their mistakes. But when we crashed in our hotel room with truffles and HGTV to go over the wedding we couldn't find a single flaw. Everything about the day was so right (except for my hair and dropping the camera in the lobby but that doesn't count). Never before have I been to a wedding where there was such an overwhelming feeling of right. Where it was so clear God brought this couple together. And you just knew together they were going to thrive and be incredible.

Congratulations, Julianne and Brandon! You two are amazing. Love you guys (and can't wait to meet your 12 kids...)

Hugs,
näna

Friday, February 14, 2014

Happy Valentine's Day, Chocolate Turtles!

a warning: you will be referred to as chocolate turtles for the remainder of the post. it was necessary to fit both "happy valentine's day" and chocolate turtles in the post title and i couldn't see any other way around it. so there. 

I have a sentimental fondness for chocolate turtles. We won't go into the why right now but I do and this Valentine's Day I incorporated them into my valentines. This recipes is so simple you won't believe it. And even I, with my customary demands for precision in cooking, did away with all measurements. Turtles completed, I wrapped them in brown paper, twine and washi tape. Voila.

CHOCOLATE TURTLES
pecans or walnuts
caramels
chocolate chips
flake sea salt

Cover a baking sheet with wax paper. Generously butter wax paper. I 'm talking serious butter. Never underestimate the stickiness of caramel.

Arrange pecans or walnuts (I used some of both) in a snowflake or turtle (duh) pattern on the baking sheet.

Melt caramels and spoon on top of each, being sure to have some on each nut so they stick together. Let set.

Melt chocolate chips and spoon on top of caramel topped nut clusters.

Sprinkle with flake sea salt.

Allow to set completely at room temperature. Store layered between wax paper.

And there you have it. Wasn't that simple. And now a very happy Valentine's Day to each and every one of you precious turtles! I am just in awe of the love of God and the friends and family He has placed in my life. I pray the same is true for you.

To my fellow Northeast dwellers, I strongly encourage cuddling up with your loved ones and enjoying this beautiful snow. You could eat chocolate turtles at the same time. Score on every level.

Cheers,
näna

oodles of thanks to liagriffith.com for the super adorable tags!

Thursday, January 30, 2014

The child who amazes me & deserves 10 gold stars.

Monday, Addison underwent his first (and *please God* last) surgery.

To goal: drain the fluid impairing his hearing before it causes permanent damage and implant tubes, despite his ultra-small inner ear, for long term drainage.

The place: Children's National Hospital. Because they are the best and Addison gets only the best.

The time: Early, early, early. Like 5:30-departure-time early.

The players: The family. All 11 of us. Because even though dragging a two and a six year old out of their beds at 5:30 and making them behave in a waiting room on little sleep early in the morning is not my favorite thing to do it seemed important for us all to be there. Henry's team. His backup. His advocates. Sure, it made no difference to him but you know the saying, "begin as you mean to go"? Ten years from now when we aren't all living at home and have busier schedules and lives every one of us will bend over backward to be there for Henry. So why not now when it is easier than it will ever be for us to be in the stands, cheering him on?

We kissed and prayed over our big guy before he was taken by the very-capable-but-still-a-stranger-taking-our-boy nurse.
Back in pre-op, Henry charmed them all with his award winning smile.  Have I ever mentioned how much this kids rocks hospital gowns?
Meanwhile in the waiting room, the waiting period commenced. I have scientifically proven a child waken at 5:00AM has an attention span of exactly 1 minute. 
At last the surgeon came out and said the procedure was a success all around. The ultimate test will be when Addison goes back for another hearing test in 4-8 weeks. 

A few minutes later Henry was back with the family. He was passed around, hugged and generally loved up on.
The hospital gave Addison a paper star for bravery. We hung it on the wall above his crib. 

I couldn't be prouder.
cheers.
-näna

Tuesday, January 21, 2014

Flight 93 Memorial

January 10th this East Coast girl headed west. Mid-west, anyway. Detroit to be specific. What reason could I possibly have to wander to that part of the country, you ask? We will get to that in the next post. First, let me tell you a story.

Months of planning proceeded this weekend trip. Okay, so we didn't actively plan for months but we did know for nine months this trip was coming and there was no way we were going to miss it. January weather is notoriously unpredictable. We watched the weather faithfully and were more than a little thankful when absolutely no form of precipitation was predicted. Until the day before. When talk of ice began. Lots of ice. Ice storm. Predicted to begin right around the time we were supposed to hit the road. We prayed like crazy that it would warm up. Friday, January 10th we awoke to...ice. Super slick driveway, roads, cars...everything. But God is incredibly good and by 10AM it was 33 degrees, the roads were clear and we were ready to roll.

We went along our merry way...singing, reading, listening to music and audio books and generally enjoying everything about the road trip. (Except the view which, let's face it, isn't all that great along the interstates.) And then...oh, bother...a sign for an accident. Turnpike closed. Hours of traffic. Not fun. We pulled off at Starbucks for coffee which, of course, would be absolutely necessary for hours of turnpike traffic. And there, right in front of us in the coffee line, was a truck driver. A truck driver who knew the back roads. And, more importantly, knew an alternate route which completely avoided the turnpike.

Coffee in hand, we set off on the new route. The roads were crazy. Endless hills. Run away truck ramps. Fog. And the most beautiful scenery.


I saw bison. Yeah, like real live bison. Honestly, I didn't even know bison were still around. :)
And then we saw a sign for a national park. Two minutes later we saw another sign:
We were already behind schedule due to our late start and detour but how can you pass such a piece of our nation's history, such a beautiful example of heroism and patriotism and not stop?
A few summers ago I read Let's Roll by Lisa Beamer. It was the first time I had thought much about  Flight 93 and reading that book was a life changing experience. To see the actual site made every detail of the story come to mind fresh and made the whole event so very real.
 This gateway leads to the field of the crash site. A beautiful picture of the gate those heroic few walked through as they entered immortality. 
 The wall of names.
This is equally saddening and joyful. To think that child first opened his eyes in Jesus' presence. I am so grateful this little one was included on the wall.
 The field of the crash site has been cleared and returned to it's former condition. This rock was already there when the crash occurred. It's almost like God Himself placed this memorial.
Seeing the Flight 93 memorial was incredibly sobering. Such a poignant reminder of a few people, often overlooked, who gave their lives for the sake of their country. These weren't soldiers. These were everyday citizens, many from my Grandmother's town in New Jersey. Because of them this flag is still waving above the Pennsylvania treeline. 
Sobered and refocused, we were on the road again.   
Late that night (much later than our 3PM goal) we rolled into Detroit.
Here's the thing: We arrived at our destination. We went from point A to point B and landed exactly where we knew we would. We didn't get there how we thought we would or in our time frame. But it turned out what God had planned for our trip was better than anything we could have planned. We all mentioned later how perfect everything about the trip was and how it was one of the best road trips we've taken in a long time.

It's kinda like life, isn't it? We have our goals. And sometime (a lot of times) we get so caught up on achieving our goal by our method that we miss the stops God has planned for us along the way. We have in our minds a set time frame and are so driven to be "on time" we don't take time to appreciate the back roads. To learn a lesson or two. To be sobered and reminded of great heroes. 

That is what God has been teaching me in the past several months and that is what He illustrated, in the simplest of ways, on a road trip to Michigan. 

Cheers, 
-näna

Up next: The Great Michigan Trip, part two.