Overwhelmed, but Not

When you pass through the waters, I will be with you; and they will not overwhelm you. 

When you walk through the fire, you shall not be burned, and the flame shall not consume you.

Isaiah 43:2

*************

I find myself overwhelmed these days. 

Overwhelmed with gratitude for all the sweet encouragement, prayers and offers of support.

Overwhelmed with awe at how God continues to place our next steps before us. 

Overwhelmed with how to continue in the present, making faithful progress in school while knowing  a big question mark lies eight days ahead of us. 

Overwhelmed with how to best organize help and home care, a hospital stay and care for tender hearts. 

I told a friend, I feel like I'm waiting to go into labor, but with none of the happy reward.  I guess you can why we’re weary as we simultaneously try to remain present and thoughtfully prepare for the unknown.

Yet, though we feel overwhelmed, we are not overwhelmed.  

We have walked through so many fires. We have passed through so many waters and God has been present and faithful and carried us.  So amazingly, while we look ahead and wonder how it will all come together, we are actually feeling tremendous peace.

You, our friends and family have been a tangible expression of that sufficient grace that is promised to us every day. Please know that while my bandwidth to respond feels limited, I read every text and email and am humbled that you carry us in your hearts. So many of you have asked how you can help. Thank you. Here's what's coming...

My mom arrives on Saturday to help manage the girls and their school schedule and help keep things as normal as possible for them. 

Monday we'll spend all day at Children's undergoing pre-op tests and procedures. 

To help with meals at home, a friend has created a meal calendar for us at:

http://www.signupgenius.com/go/10c0844abac2ea4ff2-help

Last week a dear friend threw us a Heart Party. What a sweet time it was. 

Finally, in an effort to support us practically, other friends have given gifts through Venmo (@sara-harms-2) or Paypal (mattsaraharms@gmail.com) to help with hospital meals, coffee, laundry, grocery delivery and other needs as they arise.  More than anything we treasure your prayers and your friendship. 

Fog and Sunshine

When we learned that she would need surgery, our first concern was how we'd share the news with Elizabeth.  She's been through so many surgeries and procedures and knows the reality of a painful recovery.  We both felt at peace about simply giving her the basic facts and not filling in too many of the harrowing details for her mind to dwell on, but were praying about the right timing.  Well, we've already seen our prayers being answered!  Early in the week, Elizabeth asked out of the blue if we'd gotten the results of the pulmonary stress test she had in January. 

That was the open door I needed to tell her that in fact we had! I shared that we might have an explanation for her low energy and stamina. I shared that her oxygenated blood isn't all getting to the correct side of her heart and by God's providence there is an expert at Columbia who can correct what needs to be fixed.  She was excited about the fact that both of her heart surgeons are Lebanese, but was not convinced that the surgery would give her more energy. In fact she argued that she might still want to be "couch restive", her word for just chilling on the couch instead of being up and active. HA! She keeps me on my toes, but that peaceful conversation and her calm response were pure grace.

This was one of many moments this week when God showed us that he is going to care for us and faithfully lay down the path before us one step at a time.  

"The Lord Himself goes before you and will be with you;  he will never leave you nor forsake you.  Do not be afraid; do not be discouraged." ~Deuteronomy 31:8

Though my heart feels at peace, my subconscious is clearly working on things because I'm foggy and exhausted! All I want to do is veg and binge watch Net-flix. Sigh. But that clearly wouldn't work for our school curriculum, so mid-week I did what would be good for my body and soul and joined our little crew for our Homeschool Running Club's 5K!

These mamas show up every week with their kids (babies and toddlers too!) to run with the girls and me at Riverbank State Park.  Over the past 6 months we've gotten stronger and even Elizabeth has worked her way up to jogging a mile! This is HUGE for her! On Wednesday we took advantage of a 70 degree day to walk/run a 5K along the Hudson. As we wait for surgery, we so appreciate diversions like this! 

We are so grateful for friends and sunshine and all your support and prayers. 

Goodnight Friends.

Elizabeth's Heart

For those of you who are subscribed here, you received an unexpected post a few days ago. *Someone* must have hijacked our account because it was a surprise to me too! However, it was the nudging I needed to share with you the latest news about our precious Elizabeth Joy and that mighty heart of hers.

Two years ago during a screening for pulmonary hypertension, we learned that Elizabeth has a Partially Anomalous Pulmonary Venus Return. Translated for the rest of us that means a few of her pulmonary veins are improperly connected to the right side of her heart instead of her left side.  As a result, she's not getting enough oxygenated blood where she needs it and the right side of her heart is having to work too hard with all that extra blood.

In 2016, the effect on her heart and life was not great enough that the risks of corrective surgery were warranted.  However, in a follow-up cardiac MRI in January, it was obvious that her right heart is now enlarged enough to be problematic. In addition, any added increase in her overall blood pressure is extra taxing on her already compromised liver, and increases the risk of even greater problems down the road.

At the team's urging, we have scheduled Elizabeth for cardiopulmonary bypass surgery (open heart) on March 21.  We are processing the reality of that, grieving the fact that our brave girl will have to endure yet another painful surgery and recovery period, and at the same time marveling at how God has already made a path of peace ahead of us here.

*Because of Matt's career path, we are again being cared for by world class doctors at a world class Children's Hospital, attached to Matt's hospital (Columbia won't mind if I call it that, will they??)

*In the two and a half years that we've been here, we've developed an incredible community of friends and neighbors willing to step in and fill the gaps.

I will continue to post updates here, so feel free to subscribe if you'd like to know the latest.

Now, as we began in May of 2005, so we continue...We ask for your prayers for our dear girl.  We ask that her heart would be healed, that her doctors would have the wisdom and expertise they need, that her emotional heart would be protected from fear and that once again, we would see our faithful God weaving a beautiful story out of these painful threads.

All our love,
Sara

Home and happy

Thank you for your prayers! This was the smoothest procedure Elizabeth has had in a long while. She woke up from anesthesia and after only an hour and a half was alert and stable enough to head toward home. Our gracious friend brought the girls to the hospital to meet us and rather than grab Uber home, we walked the 10 blocks home along the river and enjoyed the beautiful sunshine. That alone is amazing since our "post-anesthesia Elizabeth" is rarely energetic enough for a walk. Finally another sweet friend just delivered dinner and hugs. We are again surrounded by grace.
 

While her varices are still present, they didn't need to be treated, and while we need to have many conversations with her Nephrologist, we are home and happy and those can wait for another day.

Thank you for carrying us in your hearts and for surrounding us with your prayers. Your friendship is precious to us.

Love,

Matt & Sara

She's at it again!

Good morning Friends!

Elizabeth is at it again! Now that we know her heart is healthy, and the last look at her liver showed her portal hypertension (increased blood pressure because of that clot in her liver) might be resolving, it's high time the Nephrologist got a look at the varices in her esophagus. So this morning around 10, she'll be going under anesthesia again. Will you pray for a safe and "uneventful" procedure? Actually, we're praying for her varices to be completely gone! Will you join us? Elizabeth is a little nervous to go under so soon after her last procedure. Please pray for a peaceful heart. Ruby and Hannah will head to a friend's house (praise God for our new network of wonderful friends!) and as my mama would say, "if the Lord is willing and the creek don't rise" we'll all be home together again by this evening.

Thank you for your steadfast support and prayers. They mean the world to us. We're so thankful for your friendship and support!

love,

Matt, Sara & the girls

Heart, liver, spleen...oh my!

The results are beginning to roll in.  Overall the news is good. Thank you for your prayers and all your notes of support for us today. 

Elizabeth was a rock star. She was brave and cheerful and aside from waking up crabby and hungry (which she's allowed I guess) she was a delight all day! She had to lie still for 5 hours following the procedure, so it's a great thing that the sound of music is 3 hours 44 minutes long!

 

She rolled with all the events of the day like the champ she is.  We, on the other hand, are out of shape! Matt and I are pretty sacked after the long day of sitting and waiting, which probably indicates we're out of hospital practice, which is a great thing! If you want to know the nitty-gritty, here's my best effort before I crash...

The heart results are primarily positive: No pulmonary hypertension! She had the measurements indicating PH, but when they measured pressured inside her heart, everything is normal! That's great news!

Now for the crazy twist: Instead she has a pulmonary vein that's dumping oxygenated blood back into the right side of her heart (instead of into her left side) which is what caused the right side of her heart to grow mildly enlarged. (It's doing extra work!) But the surgery to repair it is dramatic (open heart) and since she's asymptomatic, it's not dangerous, sooo we see cardiology every 6 months and watch it...

In the grand scheme, it's better than a PH diagnosis and they got extra pictures of her repaired aorta (from her surgery at 3 days old) and confirmed that her mitral valve and aortic root are stable.

So we are happy with that!

Her liver biopsy results will take some time, but it appears based on the measurements they took while inside, that while the clot/scar tissue remains in place, her portal hypertension is stable! This could be due to the outstanding number of varices she has, so we have to get her endoscopy scheduled to check on those, but this too is a sign of forward progress.

There were some differences in the results of a recent MRI and precious ultrasound of her abdomen, so Matt asked and they agreed to do a repeat ultrasound to answer some questions  (Horray for multitasking!) At times if felt like she was getting her 60k mile check up!

So that's the low-down. She remains a unique and quite a medical marvel, and we are grateful that she's home tonight, full of joy and peace, though a little sore at the two entry sites. Tomorrow she plans to spend the whole day with grandma, and as her teacher, I've decided that might just be in the lesson plans. 

Goodnight friends!
 Love, Matt & Sara

A Procedure for Elizabeth

In the midst of a new address, a new job and new everything, one thing hasn't changed: our need for prayer and God's mercy over Elizabeth's health. By far the most complicated component to our move has been getting Elizabeth up and running with an entirely new set of doctors. She needs a lot of specialists! Fortunately, as a result of Matt's academic career, we've been at some amazing Children's Hospitals, and Children's Hospital of New York is no different.

The blessing and the curse of a new set of eyes on our sweet girl is that no one is content with what had come to be considered her "baseline", so we're running tests and investigating symptoms afresh. That has meant more appointments, pricks and tests, and we're once again amazed at Elizabeth's courage and steadiness through it all. 

Recently, her echocardiogram revealed that the right side of her heart is mildly enlarged and would indicate that it's having to work too hard to pump blood into her lungs. The only way to determine if she truly does have pulmonary hypertension is to do a heart cauterization under anesthesia and measure the pressures in each chamber. If she has PH she will need medication and special considerations whenever she's under anesthesia. The link between portal hypertension (increased blood pressure due to the clot in her liver) and pulmonary hypertension in children is a more recent discovery and she was only screened for it because CHONY has recently set up a protocol for when a 10 year old comes in with portal hypertension!

Elizabeth's heart cath is scheduled for tomorrow, Feb. 25th, and because her Dr. Daddy is on the case, he advocated to have a necessary liver biopsy done at the same time (one fewer trips to dreamland!) Her liver biopsy will help determine if, after years of regular endoscopies, Elizabeth is a good candidate for a liver transplant (another case of a "new set of eyes and a new plan").  So would you pray for our dear girl? She's the first case so we're scheduled to arrive first thing tomorrow morning. Grandma Harms has leaped to the rescue and will fly in today to stay with Ruby and Hannah and help us to manage any surprises. 

With all the fun adventures and exciting changes, it's easy--even for us--to forget Elizabeth remains in rather fragile health. She bears is with courage and grace so sometimes we don't fully grasp how many things she has going on.  But this one feels big and slightly overwhelming, as He has so many times before, we need God to sustain our family and carry our little one through.

Thank you for your prayers! We'll keep you posted!

Love, 

Matt & Sara

New Shoes & What They Taught Me About Laying Down Shame

What good is being shame-free when I don't feel shame-free?

After my revelation of grace, I knew the truth. I knew scripture said I was free of shame...that no accusation could stick...that even in the midst of my failures, CHRIST in me was accepted, so I was accepted and beloved and even the object of his great delight and affection. But how could I keep remembering that when I exploded in anger, when I judged myself for my messy house, or was sucked into a comparison cycle on Facebook? That was tricky.

But then God told me about my new shoes.

God mostly speaks to me in pictures and metaphors. He knows they stay with me and it brings me such joy to unpack them and find surprising layers of application. I sit with them for weeks or months and it seems like everything gets filtered through my newest  insight. So my shoes...

If you've been around little girls, you know sparkly shoes are always on trend. No outfit is too casual, no activity too treacherous for sparkly Mary-janes.  Ruby, is especially fond of said sparkles and seems to find a way to wear them long after she's outgrown every other similarly sized shoe. She reaches for them them, even if they give her blisters and creases in her toes!

But in the spring of 2013, in the middle of a shame spiral, I pictured Ruby cramming her foot into those old shoes and envisioned my own demeanor as I crouched down beside her to say, "Let me take those, Honey. Those old shoes don't fit anymore. But these, they're new! Here, take them! They fit! You can dance and play and be free! Give me those old shoes and I'll toss 'em. They had their time, now it's time for something new."

Isn't that like us?  We love the security of the familiar. Even when it doesn't fit anymore or even hurts us every time we reach for it. Even broken patterns can feel deceptively comfortable. Anger, blame, martyrdom, control, self-comfort that justifies and leaves no room for self-reflection.  The small measure of comfort we gain from these tools seems to outweigh the cost...but it doesn't really, does it? 

Before becoming shame-free, I would have condemned myself for all the things I should have done, and yet again, I failed to do. Overwhelmed with a homeschool decision I should have faced head on, instead I binge-watched Netflix. I mismanaged my time and then lashed out at the girls for being slow to get out the door. I didn't take care of myself and then felt crappy and crabby and who was to blame? It was my own fault, right? All my old tools led right into a shame cycle and I was defenseless against the accusations leveled by the accuser. (My girl Christa zeros in on this cycle in this beautiful post.)

But what if our Father is crouched beside us in that moment. Not with judgement and exasperation, but with delight and affection and brand new shoes! "Sister, lay down that anger, you're flawed, and your kids are flawed and I put you together to teach and receive grace". "Sweetheart, they require more patience than you have because I have MORE I want to give to you! Come to me and receive. Put on these new shoes...the fruit of my Spirit dwelling in you."  This is what God has been saying to me in the last few years. The truth is, He's been saying it all along, but finally I'm hearing Him! Finally, I'm believing I can just set down the old shoes with their shame and guilt over all my failures and imperfections and receive my new shoes full of a thousand second chances, grace to cover my inadequacies, and the truth that if Christ-in me is absolutely enough, then I AM ENOUGH!!

And the most insanely amazing part is, every single day, I get to choose! A hundred times a day I get to reach for my new shoes of freedom, and permission and beloved-ness...and then when I forget and try cram my foot back into perfectionism and striving for approval, I get to hear him say, "Darling girl, let me have those old shoes. Here, take these...Dance. Be goofy! Be bold! Be beautiful!"
 
Be free!

One of my Heroes and a Full Circle Moment

A few weeks ago I met one of my heroes...a woman whose passion to speak the truth has changed my life.

I've written here about my depression and anxiety and how in the aftermath of loosing Ava, I finally realized I needed to do more than survive.  

He allowed me to see how the need for approval and acceptance was in equal parts fueling and choking my life. I was driven to seek out and make all the "right" choices in parenting, in relationships, as a homemaker, as a friend and at the root of it all, as a follower of Jesus. But the need to do it "right" was a reaction to my paralyzing fear that if there was a right choice that could be known, and I didn't make it, then somehow the outcome would be my fault. The failure would be on me. And I would lose my life-source...the approval of everyone around me and worst of all, my Father in heaven.

 I lived in constant fear of disappointing the one who I wanted to please more than anyone else. It was eating away at me. But I was clueless as to how to break free.


God, doesn't force his wisdom on us. Instead, in his tender mercy, our patient Father will let us use our broken tools until our hands are tired and bleeding and we finally let them drop to the floor. 

Enter medication. Enter a wise counselor. Then...

Enter, Christa Black. 

Because she too is a speaker and sharer of truth, my precious mama sent me the link to three sermons which would be the key to unlocking my heart to GRACE. 

Real grace. Can't earn it,  don't deserve it, lavishly extravagant, wonderful grace.  

Friends, I heard these talks, and they were like water in the desert. For the first time in 36 years I actually believed that God, approved of me. ...That there was no SHOULD....That I was not responsible for being or doing anything more than being His beloved!...That I couldn't disappoint him....That He saw my selfish, broken, manipulative heart and was delighted to let his son's sacrifice be ENOUGH to cover and completely absorb my mess. And that never again, as long as I live and beyond -- all the way into eternity -- is there any SHAME. No should. No striving. Over Anything. Ever.

It's really true. And that truth finally penetrated my broken heart and every day since then has been a miraculous adventure in exploring this new playground of grace.

If he is either working all things together for good, or redeeming all things, then I have permission. To succeed, to fail, to TRY! 

If I can't disappoint him, because Christ in me is His absolute favorite, then I have no fear of failure! 

What would I do if I wasn't afraid? First up? Educate my own children, in my own home. 

My lifelong desire to home-school had previously choked me with fear. On my best days I struggle with organization and administration. I'm an implementer, not a visionary. Home educating three girls with unique needs felt overwhelming and even impossible! Was it fair to place my children's educational future in my hands? I wanted to but I was terrified. 

And then suddenly, I wasn't! If I couldn't disappoint God, maybe I could learn how to juggle the many hats of mom, homemaker, teacher. What if knew He could redeem my best efforts? What if I humbly offered my loaves and fish and trusted that he would multiply it to feed my own little multitude? 

So in May of 2014, we stepped out into the unknown and began our homeschooling journey. Day by day God has been faithful. He has provided us with community, supplied me with direction and wisdom I needed and grace for the messy and long and hard days. He has strengthened my character as I grow into the teacher I want my daughters to have. It is hard. It is precious. And one day, week, month, year at a time, he's gently leading us forward.

There is so much I want to share here. The stories are piling up, but I had to go back because so much of our New York Adventure has only been possible because of the new freedom we've found to hope and risk to pursue our dreams. Meeting Christa here in New York was in many ways, coming full circle. It was such a privilege to hear her teach and then to have the opportunity to tell her how influential she has been in my own life--and because I'm a truth-sharer like my mama--in the lives of my family and friends. 

I can't share our journey without our new reality front and center. We've been invited to try and fail and risk and fall and dance and enjoy the ride without fear....

And the best part? Our precious girls are on the ride with us! Our daughters are learning right alongside us that they too are free and brave and beloved.

So much more to come...

Xo, 

Sara

We're Here!!

Have you ever tried drinking from a fire hose? Neither have I, but I've heard it's almost as intense and overwhelming as moving a family of five to Manhattan! After a month of hanging on for dear life I'm so excited to send out a quick update: We ARRIVED! 

In light of the hurricane threatening to send rain into Manhattan, we shortened our cross country trek to two days and arrived around 8 PM on October 2nd.  

We managed to hire movers over the web while driving down the interstate in Pennsylvania, happily unloaded our Uhaul trailer, circled for an hour at midnight to find a *cross-your-fingers-it's-

legal* parking space, and promptly got our car towed! 

 

But if there's one thing Matt loves more than a happy ending, it's a dramatic story, so even that had an upside. 

 

Matt traipsed downtown and uptown and then downtown again in the pouring rain, and at the end of the day the tow-yard was closed for the weekend, so --good news-- we had free parking until Monday morning! No sooner had we claimed our van, then we parked it on Riverside drive and it was lovingly assaulted by a too-close driver and our drivers' side mirror was no more!

 

 

Suddenly, we were official New Yorkers! We've found we're part of a large brotherhood and have learned that being towed is part of owning a car here and our van will likely get its share of bumps and bruises thru the years. Now isn't that reassuring?!

We had three sets of visitors in our first week and it gave us a great chance to explore our new city and make sure we remembered, in the middle of all the moving craziness, to celebrate Matt's birthday!

 

We live in Washington Heights (Northern Harlem) and are surrounded by folks from the Dominican Republic. I'm delighted that we get so much time interacting with new cultures and the girls love speaking to our neighbors in Spanish anytime they get the chance. Because we home-school, we're often moving about the neighborhood during school hours, and this mama and her three exuberant clones draw quite a lot of attention at the grocery store and on the subway. They just skip up Broadway and spread joy wherever we go. Our apartment (a furnished sublet for the next 9 months) is delightful. It's on the Hudson River, and we wake each morning to watch the sunrise reflecting off the palisades and the river itself.

 

After being led on a bit of a rabbit-trail in the search for faculty housing, we, who had no idea where we should live in this great big beast of a city, have been plopped down in such a beautiful space!

We are a quick walk from a running/walking trail along the waterfront, very near two awesome parks and along the way get to breathe in nature and beauty and marvel at God's extravagant grace.

While things have technically slowed down, I still find that it takes every one of my brain cells to do ANYTHING with three kids in tow, so we're spending all of our energy learning new ways of doing everything.

Grocery shopping: we walk six blocks to the grocery store, learn Spanish words for breakfast sausage, sweet potato and  'yes, all these children are mine", say hello to our favorite checker, Darlene, and then carry our food home with us.

Laundry: the girls and I parade down to the spacious laundry room on the ground floor of our building and using our "laundry credit card", for the price of a grande vanilla latte with an extra pump of coconut syrup, we get clean sheets! Bonus, we get to meet our neighbors, "si, tres ninas"..."si, solo ninas"...(everyone likes to comment on our three girls!) and meet people who have lived here in this very building for 50 years!

Errands: What? Errands? Skip them. Not worth losing our parking spot. OR better yet, ride the most amazing subway system in the world! But remember, you'll have to carry whatever you purchase home with you...so chose wisely! Suddenly, those daily trips to Target (lets face it, they really were just about getting out of the house) are a thing of the past! We're either homeschooling around our table, walking to the park, or hauling groceries. Go figure, we moved to the big city and our life got surprisingly simplified!

The girls have transitioned amazingly, and God is answering my prayers to grow my trust in his specific care for each of our girls. He's taking such good care of them and I'm blown away by their confidence and peace and enjoyment of this crazy city life! Hannah loves to test herself on the subway train to see how much jostling she can take before she has to hold the bar, Elizabeth loves to run downstairs (4 floors) to check the mail, and last week I pointed out a suburb in New Jersey to Ruby and said, "this is the kind of place where Grandma could live if she moves here" and Ruby quickly said, "No, Grandma should live in our building. That way we won't have to move our car [read: lose our parking spot] to go visit her!" They are quickly becoming city kids!

 

Our neighbors ran in the NYC Marathon last weekend, so we got to make signs and cheer them on with a group of new friends from our Church.

We have a church people! God is so good! We've been drawn to a warm community of believers in the Upper West Side and are in awe of how gracious our entry has felt. Three families from our home-school community attend there, as does our dear friend, Elisabeth, with whom we've been joyfully reunited after a 10 year hiatus. As far as we're concerned, NY is the friendliest city in which we've had the privilege to live. Everyone here is eager to help us get our bearings, find the subway, learn to speak/order food/purchase groceries in Spanish, cross the street without dying, and successfully get our kids on the subway.  We LOVE the constant interactions with neighbors and the frequent opportunities to explain the gospel in real life to the girls. They are learning so much, and so are we!

Matt's loving his work here, and is quickly making connections and is able to see opportunities to use his gifts. There are the institutional speed bumps and politics to navigate, but Matt has been well equipped with discernment and wisdom, so he's rolling with the punches and is seeing God's provision of favor and great working relationships. This week he's in Florida, later this month he'll travel to Mumbai to speak at a conference, and next spring he's heading to Japan! We're so proud of him and are overjoyed to see the fruit of his hard work and God's mercy.  I'm slowly adjusting to doing life in someone else's home with someone else's stuff! There are all the usual hiccups...but at the risk of glossing over some of the difficult parts of this transition, we really are so happy here, and even the hard and complicated parts are pointing us to areas where God wants to supply our needs.

Now that I've gotten caught up, I hope to post shorter updates and photos of our life on Instagram @saraeharms and here on our blog. 

We're also planning to send out a Christmas card for the first time in a number of years, so if you'd like one, and you don't think I have your correct address, please update us! you can PM me on facebook or use the email in the sidebar and send us your mailing address.

Much much love from our crazy adventuring family to yours!

Matt, Sara & the Girlies

A New Adventure

In an effort to include ALL the amazing twists and turns, I keep delaying send in out an email...but it doesn't appear there will be a break in the action, so here comes the Harms Family Update! We're moving to New York City (yep, Manhattan!) where Matt has been offered the job of his dreams at Columbia University, and the girls and I will open the Big City campus of the Harms Homeschool! 

Friends, God is so, so good.

These past 10 years have been such an intense journey through grief, and sorrow, and learning to mine the dark and messy places for signs of God's goodness and faithfulness. Many precious treasures have been found, and He has carried us through much loss, but if I'm honest, the pain, which sometimes felt unending, has taken its toll on our hope and trust.

Shortly before moving to St. Louis, Matt and I had a conversation in which someone asked us about our dreams for the next 10 years. We stared blankly at the man, and had nothing to say. Dreams? We had none. How could we dream when at any moment our daughter could be hospitalized with a life threatening medial crisis, when her health, development and future were so uncertain? At any moment, all plans were laid aside. Our life was awash with uncertainty, and to hope and plan for anything was simply too painful. It wasn't even possible. Our hearts responded to our pain by letting go of our dreams, tempering our hope, and ultimately, protecting our hearts from being disappointed in God. We had no dreams.

But God! He has faithfully used all the heartbreak of the past few years to strip us of our self-protection, and is graciously reintroducing us to hope again.

And so, for the first time since Elizabeth was born, we are dreaming!

In the middle of May, Matt was invited to speak at Columbia, and while there he was offered his dream job doing patient centered research on ALS. We've been really happy here at Wash U and in St. Louis in general, so we hadn't even realized there was a dream job out there!  Thanks to the amazing success of the Ice Bucket Challenge, Matt will be able to use his gifts and talents at a world class institution to make huge strides in understanding ALS!

http://www.bostonglobe.com/business/2015/08/18/biogen-study-als-with-help-from-ice-bucket-pledges/oWk3P0DiIAKxEWUwBBLs9H/story.html?s_campaign=8315

There is so much more to share, and I will as soon as I can take a breath! In the mean time, our dear friends are helping us sell our house, (Click to View Listings) God has delightfully provided us with a fully furnished sublet in Upper Manhattan near the hospital where Matt will work and we have seamlessly transitioned to an Upper West Side community for our Homeschool Co-op, (www.classicalconversations.com). 

Friends, we are really dreaming. 

Early on in the process, as Ruby processed the loss of everything familiar and her fear about the unknown, God gave us a Disneyland metaphor for this grand adventure.  He has invited us to a good and exciting place. And because HE has invited us, HE is planning the trip, outlining the route, scheduling the pit stops, arranging the hotels and buying the tickets! We don't have to handle all the details ourselves, and we certainly don't have to be afraid of the destination. We are learning that he is as committed to providing for our dreams and desires as he is for His commands. We are learning that sometimes a ride roller coaster can feel a lot like free-falling, but we are securely strapped into the arms of our loving Father and we really don't have to be afraid. 

So as long as we know He has us, we might as well throw our hands up in the air and enjoy the thrill of the ride! 

Sympathy and Empathy

A blogger I follow posted the link to this video and it's a priceless tutorial on the difference between sympathy and empathy by the brilliant Brene Brown. We've been on the receiving end of both over the years and she explains the difference better than I could. If you're wondering how to care for someone who's in a difficult place, this may be a place to start.

 

Merry Christmas!

Hello Friends and Family,

After such a long season of quiet, the end of 2013 provides a lovely opportunity for a family update!

Since our family celebrated Ava Day in May, we've been slowly moving forward. There are far too many hills and valleys to walk through them all today, but looking back, we have continued to see God's faithful hand at our backs, gently guiding us onward, and in front of us, clearing a path. Ava remains part of our daily conversation and the girls love to incorporate her into our activities. The hole she left in our hearts remains and these family celebrations give us many opportunities to reflect on our journey.

Matt is busy with work in at Wash U and his research lab is on good footing. After injuring his back and cervical spine with unfortunate snow shoveling technique he has been slowly recovering and is looking forward to resuming his running in the New Year!

Elizabeth is loving 2nd grade and continues to thrive at her charter school. She has a wonderful teacher and is blessed to have Mrs. R as her aide in the classroom. She's increasingly independent, super creative and loves to write and make up stories with her sisters. She recently declared she was a songwriter, so we look forward to seeing her develop her skills! 

Ruby is thriving in Kindergarten and loves to sing, read, draw, snuggle and is very proud of the calluses on her hands from all the climbing she does on the school playground! She is a loyal friend, and very caring and empathetic. She never lets anyone cry alone, so if you need a shoulder to cry on, she's your gal.

Hannah Mae is our little adventurer! She's learning to write her name, loves to sing and build and scare her mama by hanging from high places like a monkey! She comes with me to a Thursday morning bible study and loves to pray for her friends, and every single ambulance or fire truck we see!

I, Sara, am doing well. After a full summer of swim lessons, visits from out-of-town friends, a Harms family reunion at the Oregon Coast, and a wonderful road trip to Canada to visit my sister's family, the start of school in August almost felt like a break in the action! We tried to slow down a bit this fall while Matt traveled quite a bit for work and that has allowed us to have a really peaceful Advent.

We are so grateful to be able to fly to California for Christmas to be with my parents and siblings and all the nieces and nephews. While I write this, Elizabeth is hunkered down with a stomach virus, but even illness feels easier when surrounded by family.

We hope you and your family are doing well, and pray you would experience the deep love of God in this coming year. We are so grateful to have you in our lives!

Love, 

Sara (for all of us!) 

Ava's Glorious Day

What a day.

I woke up at 5:50am with the lyrics to Tim Hughes' "Oh Happy Day" in my head. Strange. But I couldn't shake them! I kept finding myself humming, "oh, what a glorious day"....until I finally had to look up
the rest of the song.

The greatest day in history,

Death is beaten

You have rescued me

Sing it out, Jesus is alive!

The empty cross, The empty grave

Life eternal You have won the day

Shout it out, Jesus is alive!

He's alive!

Oh happy day, happy day

You washed my sin away

Oh happy day, happy day

I'll never be the same

Forever I am changed

When I stand, in that place

Free at last, meeting face to face

I am Yours Jesus You are mine

Endless joy, perfect peace

Earthly pain finally will cease

Celebrate Jesus is alive!

He's alive!

Oh what a glorious day!

What a glorious way

That You have saved me!

Oh what a glorious day!

What a glorious name!

What a perfect thing to remember today.

Because He is alive, Ava is alive, and is spending her second birthday gloriously, wonderfully WHOLE! What a celebration she must be having!

Here in our yard, in celebration of Ava Day, our very first peony (we've decided it's Ava's flower) was ready to burst into bloom...

Grandma came to care for the girls, and spent the morning at a school event with Elizabeth's class.

As a result, Matt and I had precious together time over breakfast and then walked through the Missouri Botanical Gardens to see their peonies in glorious color. Oh how their bright and happy blooms just delight my heart! We sat by the lake and read a few cards from friends and family. We read your texts and emails and felt the love from all over. 

We arrived home to prepare for our Ava Day family celebration and a backyard bar-b-que. The girls and I made lemon cupcakes with sparkly pink icing which were lovingly decorated and later joyfully consumed! It's a birthday tradition in our family that everyone shares something they love about the birthday girl (or boy), so Ava got her turn and we all shared our memories and special stories. What a year of experiences we had with our Little Bean.

Finally, we had a backyard camp-out tonight, complete with campfire, hotdogs, marshmallows and the girls' first experience sleeping in a tent! Good thing their Daddy is a great sleeper. I left them to their adventure, and I'm going to enjoy a comfy bed and quiet house as long as I can!

As I climb into bed, I look out at the perfectly round moon, and am again awestruck by God's faithfulness to bring so much beauty out of so much sorrow. We ache to hold our sweet one. We shed tears over our loss. And yet we are full to running over with precious memories and gratefulness for the time we had together.

Thank you all for your cards, flowers, texts, and emails, voice-mails and pictures of the moon from all over the world tonight! You love us so well.

Goodnight dear ones and goodnight Ava Bean.

A Year With Ava

Someone knew us.

Someone knew that capturing moments and people we love on film might be called my "love language".

Someone knew our time with our sweet girl was precious and short.

And that someone, also knew the talented Josh and Amy Heater at SweetTea Media and asked them to give us the gift of a lifetime.

In March, three months before Ava died, Amy offered to begin coming to our home and following our family to capture the moments we lived and played with and cherished our Ava Bean. We couldn't say YES fast enough! You've already seen some of the footage in the video we played at Ava's memorial service, but that was only a slice of the treasured moments they captured.

The movie below is another treasure. For me, it's 20 minutes of grace. I feel like I can almost touch her again. Reliving those moments and remembering the dear people who made them possible has been part of my therapy this week.

We still don't know who that Someone is. But we are forever grateful.

A Year With Ava from sweetTea media on Vimeo.

Special thanks to Stephen Miller for use of his songs I Surrender All and How Deep the Father's Love for Us
www.stephen-miller.com

Ava's Nest

Last April, Matt traveled to New Orleans for a medical conference and happened to walk by a studio hosting an exhibit by Mitchell Lonas, and was enthralled. He stood in front of the enormous pieces of art and was blown away by the intricate nests carved into metal canvases.We dreamed about having his work in our home.

When it became clear that Ava was moving closer to heaven, Matt and I decided we wanted to have her body cremated. Though we knew her spirit was free and whole and in the presence of her Creator, the idea of her body being laid to rest anywhere away from us, simply broke our hearts, and we couldn't do it.

 Shortly after her memorial service, Matt was put in touch with Mitchell, and asked if he'd be willing to create a memorial piece for our Little Bird. She has left our nest. She is at peace and we couldn't imagine a better way to treasure her memory. Mitchell graciously agreed, and in October, we received this breathtaking tribute to our precious girl.

Thank you to Ashleigh Blevins for capturing Ava's Nest on film.

For months, I've had nothing to say. I couldn't name what was happening inside for anyone else. The sheer intensity of life and trying to stay present in the moments that filled each day left no room for silence and writing and sharing. So I have treasured things in my heart and waited for the time I knew would come.

I didn't know what exactly I needed. But God did. Slowly, He's created for me a space. 

A special place to remember. 

In the fall, a dear friend helped me redesign my living room. She placed the framed picture of Ava under the clock...so we would see it many times a day. Shortly after that, we received the memorial piece we'd had made for Ava. A beautiful piece of art, custom created by Mitchell Lonas. 

Finally, Grandma Harms' moving truck arrived this week with her precious things from her home with Grandpa in California. She had set aside this chair for us and as soon as I sat in it, I burst into tears. I wasn't sure why, until I realized, this recliner felt exactly like the one I sat in with my Ava Bean for hours and hours during her 84 days in the NICU. My body knew where it was.

 

As we look ahead to Ava's Day next Friday, I plan to spend many moments in this little slice of heaven. Cuddling my sweet girls, remembering our Ava Bean and reflecting on the journey of the past months. I look forward to sharing it little by little...in time.

Pursuing the Sunrise

Thanksgiving weekend marked six months since Ava's death. Far from feeling grateful, I felt overcome. For weeks I'd sensed I was slowly slipping toward despair.

"I dreamed...I was frantically running west, trying desperately to catch [the setting sun] but I was loosing the race...I glanced over my shoulder to the east. I saw a vast darkness closing in on me".*

Round moons, and all the tulips in Holland couldn't change the fact that this life of pain and sorrow was threatening to swallow me.  From where I sat, in the throws of depression, the truths I'd believed, rehearsed, written and proclaimed couldn't gain traction.

In desperation, I sent a text.

"...I think it's about time..."

A friend responded with the number for her grief counselor, and I sat in a puddle of tears. I made an appointment, and called my doctor.

This life we have lived over the past seven and a half years has been so filled with emergencies and coping and necessary compartmentalizing that I have simply been unable to thoroughly grieve all the losses and disappointments and sorrows. And now I don't have a choice. My body is telling me that my heart needs some attention.  Some space to grieve, to be angry, disappointed and undone...and to let God meet me there.

"...the quickest way for anyone to reach the sun and the light of day is not to run west, chasing after the setting sun, but to head east, plunging into the darkness until one comes to the sunrise."*

I am choosing to walk into the darkness of grief and to open myself to the sorrow.  The medication I'm taking is helping my brain to feel safe to process and has lifted the veil of despair enough for me to remember what I want, and what I know is true.  I am spending time with a grief counselor regularly and am grateful for this sacred place.

It's time to take care of myself. For Ava, for my family, and for me.

*Jerry Sittser, A Grace Disguised