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