Thursday, August 28, 2014


this photo has absolutely nothing to do with this post except it makes me happy and I don't like photoless posts
Those of you older than I will laugh but, to me, nineteen is a pretty big number. The last year of the teens. It feels like I can no longer get away with being a kid and all of the sudden the world in general is going to expect me to be a full blown adult. Not a bad thing. Just different.

It's pretty incredible how much has happened in this past year.

I graduated high school
I learned to drive
I had my wisdom teeth extracted (I will never be able to comprehend why this simple procedure is considered a milestone)
I began to learn the violin
I ran my first race, a 5k for Down Syndrome awareness
I revisited Georgia (once) and Lancaster (twice)
And I traveled to Deep Creek Lake, Maryland and Detroit, Michigan for the first time 
I joined a (beginner) band/orchestra
I witnessed the marriage of a very dear friend
And saw another dear friend go home to be with Jesus
I volunteered at a camp helping kids with disabilities learn to ride a bike
I joined a Down Syndrome advocacy group
I reconnected with my mother's second cousins
I planned a Valentine's banquet and Henry's first birthday party

That's what I did during my eighteenth year. Now let's talk about what God did.

He began to unravel a plan and purpose for my life
He taught me about timing and how His timing is just as important as His plan
He showed me what true service was (and the joys of truly serving)
He changed my thinking on so many issues
He convicted me on honesty, pride and the need to live free of every expectation except His own
He saw me through every uncertainty, tough spot, joy and heartache

It's easy for me to feel  frustrated when I sit back and analyze my life. There are so many imperfections, so many areas in need of sanctification. It's easy to want to give up, stop fighting for a Christ-like perfection that seems impossible. I don't expect perfection. But I do pray that every year I grow a little closer to Jesus, a little more selfless and reflect, a little better, the love of my Savior.

...yield yourselves unto God, as those that are alive from the dead, and your members as instruments of righteousness unto God. Romans 6:13

Friday, August 15, 2014

My Hermitage

When I read The Cloister and the Hearth for high school literature I thought being a hermit would be fun. Don't get me wrong...I am not a sociopath. Quite the opposite, really. I love observing people (the more diverse the better). But you have to admit being a hermit, as described in The Cloister and the Hearth, does have a certain cozy feel about it. And for the past several weeks I have been able to experience a full blown hermitage...or as close as you can come when you live with ten other people.

Here's how I came to be a hermit: Henry, my darling little brother, was recently diagnosed with a seizure disorder (more on that here). The medication he is being treated with suppresses the immune system so severely any exposure to sickness is dangerous. By order of his geneticist, Henry and, consequently, those of us lucky enough to live with and hold him everyday (yes, I am trying to make you jealous) cannot be exposed to any possible sickness. So we aren't leaving the house except when absolutely necessary and then only with plenty of hand sanitizer.

Now some of you may see this as a death sentence. I am a person who likes to go and do so hermitude (let's see how many tenses can I come up with for the word hermit, shall we?) doesn't come naturally to me. But as I've been weighing the pros/cons of the life of a hermit I've come up with a surprising number of pros.

1. I've been remarkably efficient. I've read two and a half books in two weeks. Complications: a young surgeons notes on an imperfect science by Atul Gawande, The Pact by The Three Doctors and How Doctors Think by Jerome Groopman. For me, a dyslexic and habitually slow reader, that is a gloriously fast pace. Plus I've completed two knitting projects and am making steady progress through a third. (Check out my Ravelry page for project details!)

2. Afternoons by the pool have now become morning/afternoon/evenings by the pool. Most days I go straight from my pajamas to my bathing suit to the shower to my pajamas. It's lovely.

3. We've had some serious family time. Including, but not limited to, regular family dinners, cut-throat games of Monopoly, Castles of Burgundy (our new favorite) and badminton till my legs...and arms...and abs ache.

4. Sunday mornings, watching church via live stream, by the pool, in my bathing suit, with doughnuts AND coffee is definitely the way to go.

5. We're developing our creativity. Yesterday we learned to square dance via You Tube. Because we've been at home for a month and are running out of things to do. FYI: Square dancing is pretty darn fun and not nearly as complicated as it looks in Barbra Stanwyck movies. You learn something every day.

While I definitely would not thrive on this life style for an extended period it has been a much needed blessing and break after an unusually hectic summer. God knows what we need when we need it. But maybe that's just the intense positive thinking training my dear mother (and part time therapist) speaking.

So now I'm curious. Have any of you dear readers ever had a go at the life of a hermit?

Tuesday, August 5, 2014

On Coping and Cheap Therapy

The thing about going through hard spots with people is you learn so much about them. Granted, it's not always things you wanted to know. You may come out respecting them just a tad less but that is entirely beside the point. The main thing is this: when you go through a struggle with someone you get to know and really understand who they are.

Through this unbelievably crazy year I have learned how my mom, father and older sister cope. With stress, anxiety, heartache. To balance, reorganize and find a sense of normality.

My mom. She writes. It's amazing. Sometimes within just minutes of hearing some unfortunate news my mom will be furiously writing. What is amazes me is how the things she writes during these frenzies are always the most heartfelt and beautiful pieces.

My older sister takes a different approach. Namely, pounding the piano within an inch of it's life. Just kidding. Really, she is a fantastic pianist and I love hearing her play. But when life is out of control you can bet the piano will be a bit louder, faster and more passionate.

Now my father can go one of two ways. Sometimes he will completely throw himself into a project (building a shed, planting a hedge, researching jogging strollers) that really has nothing to do with the situation at hand. But don't tell him that because he will completely zone in on that project and that project alone as imperative to the well being of those he loves. Alternatively, he will go in his office, put on his noise canceling headphones and sing (loudly) while he works. Note: I love him to death but singing is really not his strongest suite.

As for me, well, let's just say I do not have such wholesome habits. Turn my world upside down and I will spend money, usually on baby clothes, and eat ungodly amounts of chocolate.

Regardless our methods, the important thing is that we do cope. We know enough about ourselves to know what we need and what works for us. We accept that we've been knocked down, dealt a bad hand. We acknowledge that. We reorganize...with our music, our project, our writing and, yes, even our chocolate. But we don't stay there. We stand back up, pull a forgotten trick out of our sleeve, wow them all with our ability to still be standing. And then we go on.

It may leave me broke and with a few extra pounds but, hey, it's still cheaper than therapy.

How do you cope with the messy bits in life? Comment and let me know...I may need your suggestions if I ever decided to reform my habits. 

Tuesday, July 15, 2014

When God's Plan Differs From My Plan: and other lessons I've learned from a little boy named Henry

As I write my little brother, Henry, is in Children's National Hospital. In the past twenty-four hours he has been suspected, tested, diagnosed and treated for infantile seizures (West Syndrome), a form of epilepsy.

Here's the thing. Henry has Down Syndrome. And since he was first diagnosed with DS I have been okay with that. I've read memoirs of people who had to learn to accept their baby with down syndrome as less than perfect but that has never been an issue for me because I've never believed he was anything less than perfect. So naturally I accepted him as whole. As fearfully and wonderfully made.

My family's goal for Henry is nothing less than a PhD in physics from Harvard University. And I truly, 110%, believed he could achieve it. I believed he would learn to drive a car. And one day marry, hold a job and live a full life. Because there was no reason he couldn't. If we gave him every opportunity I believed he could do anything he wanted. There was nothing stopping him.

Through a year of therapies and doctors appointment I've held to that. One day I would see him walk across a stage and be handed a diploma. It would be the proudest day of my life.

Today for the first time in one year of unfaltering belief I began to doubt our dreams for Henry will ever be a reality. If I will ever attend his Harvard graduation. If I will ever teach him to drive. Or see him say "I do" to the girl of his dreams.

In a paper published by the National Center for Biotechnology Information in 2006 Dr. W Shield writes: "Of the 147 surviving patients [of 214 cases], 25 (17%) had a favorable developmental outcome with an IQ of 85 or greater. Eleven others were in the dull–normal range, with an IQ of 68–84. Thus, of the 214 patients diagnosed with infantile spasms, 31% died, 45% were retarded, but 24% had a reasonably favorable outcome."

That's a pretty hard to swallow. Because this is not part of my plan for Henry. This was not my vision for Henry's life.

Please don't misunderstand me. This doesn't make me think any less of Henry, I really don't. I still believe he is fearfully and wonderfully made. A perfect creation of Jesus. And capable of the impossible.

For the first time I'm acknowledging that he may have limitations. And my dreams for Henry may never come true.

But I'm also learning to accept that.

Because most of all I want Henry to follow God's plan for his life, just as I desire to follow God's plan in my own life. I want Henry's life to be a witness of God's goodness, love and grace. Since Henry was born we have been praying for Henry's life to reach the world. And if God decides Henry can best reach the world with an IQ of 68, so be it.

Several months ago God began to unravel His plan for my life. A plan far from my own. It goes something like this: Four years undergrad work, the formidable MCAT, four years medical school, two to twelve years residency.

I'm going to be honest here: this was not my plan for my life. My plans ran something along the lines of a quick four year degree followed by a easy and enjoyable career where I could be nearby and available for my family. But you know what? God has given me a love and passion for His plan that I never expected. It's to the point where I really cannot imagine myself doing anything else. I see the many ways he has been working in my life through the years to prepare me for this. And even though I know the trials of the journey and how taxing the path will be physically, intellectually and emotionally, even though this wasn't my plan, I'm downright excited and can't wait to get started.

And one day I believe when I consider Henry's life it will fill me with the same excitement. When I see what God's plans where for him and how he used every bump in the road to bring about his master plan I will be able to smile and acknowledge that through it all Jesus really did know best. I'm still hanging onto Harvard for Henry. But if that isn't part of God's plan I'm okay with that.

Because maybe, just maybe, my plans are not God's plans. And maybe, just maybe, that's for the best.

I'm standing here and my finite vision can only see today. My infinite God sees today, yesterday and tomorrow.

Friday, July 11, 2014

On the high school years, finding your purpose, and why searching is only good in Google.

It's inevitable. As soon as a person enters high school family, friends and (it sometimes seems) every human being on the face of the planet begins the ask "the question". It comes in many shapes and sizes but they all say basically the same thing: What are you going to do with your life? And I was no exception. As soon as I started high school the questions starting pouring in from every direction.

Now there are a few things you really must understand about me.

1. I am extremely goal oriented

2. I am an obsessive micromanager (who, ironically, hates to be managed)

3. I always have a plan (and a few back up plans, just in case) and am super prepared (I carry a small pharmacy in my purse)

4. I always know the answer...or at least, on the rare occasion I don't have the answer, I will come up with the pretty darn convincing answer

I view the high school years as a pretty critical time in a person's life. It's the final preparation. Your last chance to get everything straight before entering adult life. I screwed up in many ways during my high school year and wasted a lot of critical maturing time. But I got at least one thing right.

I realized early on my future didn't rest within my hands. Before starting high school (let's refer to those four years as "the critical phase" for the rest of this post, shall we?) I believed firmly God has a plan and purpose for every person's life. And only in carrying out His plan...whether it be serving as a pastor or a missionary in a foreign country, flipping burgers at McDonald's, a full time mother, or an executive in a larger cooperation...can we ever find true purpose and fulfillment. More importantly, only in His will can we optimize our potential to serve Jesus in the future. I committed myself to following God's plan for my life.

Resolved to follow God's plan 100% I entered, shall we say, phase two: Discerning God's Plan. Every day during "the critical period" I prayed for God to show me His plan. For wisdom to see His plan when he revealed it. And for courage to carry it out and follow His plan regardless.

But I started my senior year clueless and frustrated that God was keeping me in the dark. Here's the fifth thing you should know about me: I am very impatient. I mean, VERY impatient.

I don't know why God chose to keep me in suspense so long. But I have a few ideas.

1. I wasn't where I needed to be spiritually

2. I still had (and have) a lot of growing up to do

3. I wouldn't have been receptive because of the reasons above

4. He was teaching me patience

5. And here's the big one - I was searching for God's plan.

If there is one piece of advice I would pass onto a thirteen/fourteen/fifteen year old trying to figure out life it would be this: Never, but never, go searching.

Don't look for your future spouse. Don't seek your purpose. Don't go searching for God's will. Embrace where God has placed you. If you're in high school, embrace this opportunity to further your education! If you are on summer vacation, embrace the opportunity to invest in relationships and rejuvenate your body and spirit! If you, like me, are between high school and college, embrace the freedom to explore your interest and prepare for your future calling. But don't go searching for something.

If you search for something you will find it. But there's no guarantee it will be the right thing. Or even if it is the right thing there is no way to know if it's the right timing. You get what I mean?

But I can guarantee you this. If you...

1. Embrace the season in which  God has placed you

2. Trust God will fulfill your desires and direct your steps when He is ready and

3. Make a relationship with Jesus the only thing you are seeking God will reveal His plan. He will direct your steps. And when He does it will be more amazing than anything you could have hoped for.

At least, for me, it wasn't until I came to this conclusion that I saw clearly what God had been trying to show me for, I believe, quite some time. And it is amazing and more than I could have hoped for. And I will tell you all about the next post.
via pinterest
What do you think? Have you had a similar experience? What do you think about "searching"? I would love if you commented and shared!

Wednesday, June 4, 2014

Summer Reading List

I am an incredibly slow reader. Often I have to reread a page several times to fully grasp the concept, making my reading progress even slower. Despite the effort I read because the simple pleasure of getting lost within the pages of a really good book.

Every October when I come home from vacation I get busy with life in general and reading is moved low on my list of priorities. But as soon as the weather warms and the pool opens (in short, summer holiday commences) the only place I want to be is tanning by the pool with a stack of books...or my Kindle...which is essentially a stack of books condensed into less matter.

A Tale of Two Cities by Charles Dickens - Finished and highly recommending highly. Dickens does it again.

The Iliad by Homer - I am reading the Alexander Pope translation...the language is absolutely beautiful. If I still love this book by the end I may add the Odyssey to my reading list.

Romeo and Juliette by Shakespeare - I've never given Shakespeare a fair chance and a little tragedy is always nice ... ?

Pressed Pennies by Steven Manchester - The author is a friend of my mother's and one of the characters is named after Henry (!!!).

Mere Christianity by C.S. Lewis - Based on several strong recommendations from multiple friends. Plus C.S. Lewis always grounds me and reminds me the focus of my faith.

Gifted Hands by Ben Carson - Inspiration for the journey. :)

Politics: A Treatise on Government by Aristotle - My first in philosophy...if nothing else I'll memorize a few passage to throw out at dinner parties while pretending I have the foggiest idea about what I am talking about.

Republic by Plato - Because it seems wrong to read Aristotle and not Plato.

Sacred Singleness by Leslie Ludy - Rereading.

Rosalind Franklin: the dark lady of DNA by Brenda Maddox - After reading this book I may never be able to read The Double Helix again.

Emma by Jane Austen - Because recently I have found myself relating to Emma (slightly ironic sentence when you consider I have an relative named Emma).

Better: a surgeon's notes on performance by Atul Gawande - This sounds like a book my mom would love...a surgeon applies surgical methods of optimizing performance to everyday life. Started reading this book and realized my description was a tad off. I quote, "This is a book about performance in medicine. As a doctor, you go into this work thinking it is all a matter of canny diagnosis, technical prowess, and some ability to empathize with people. But it is not, you soon find out. In medicine, as in any profession, we must grapple with systems, resources, circumstances, people - and our own shortcomings, as well. We face obstacles of seemingly ending variety. Yet somehow we must advance, we must refine, we must improve. How we have and how we do is the subject here." Even better than I thought!

How Starbucks Saved My Life: A Son of Privilege Learns to Live Like Everyone Else by Michael Gates Gill

So excited summer and reading are back again! I'm always looking for recommendations so tell me...what are you reading this summer?

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 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.
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. 

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 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.

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.

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, and other similar websites have search engines for finding races for various causes in your area.

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 are great for find and keeping up with federal bills. Many state governments have similar websites such as the Maryland General Assembly website.

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.

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's about CELEBRATING Down Syndrome and the wonderful GIFT it is.


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.

Monday, December 16, 2013

Thanksgiving in Photos

It was the Macy's parade. It was traditions. It was family recipes that have seen countless Thanksgiving Days. It was reconnecting with old friends and family and forming new friendships. It was a celebration of  family, friendship and cultures -Mid-West, Jersey, Southern, Italian, Polish, German. It was a house full of loud voices and laughter. It was every seat around the table filled with a loved one. It was Thanksgiving which, as everyone knows, is the best day of the year.
Give thanks unto the Lord, call upon his name, make known his deeds among the people. 1 Chronicles 16:8