Sunday, May 22, 2016

God's Grace

The grace of God is real in situations that seem unimaginable. I have to start here. It is a truth in our lives right now.

God has seemingly primed us for the latest diagnosis for Judah. He was born with a diagnosis we'd never heard of before, and had the particular neonatal surgeon he needed for his first three surgeries right in Minneapolis, right where we were. God walked us through each surgery, each need, and showed Himself faithful. We've danced the ebb and flow of trusting God, facing fear, waiting, and seeing Him meet us. Our faith is fueled by the history of His movement in Judah's young life.

Now we face a new diagnosis for Judah: Portal Vein Hypertension. This has caused his enlarged spleen. This has caused his low platelets. This has caused his espohageal varices. This is the diagnosis we searched for almost a year to find. And we learned this past week, that this can cause even more complications down the road if not fixed. 



What are the options? There are many. But one is clearly the best for his longterm health: the Rex shunt.

The Rex shunt would essentially re-route the blood in the portal vein, creating a "bridge" between an existing entrance in the portal vein and an existing exit in the liver. The bridge would be formed either through a vein in the portal vein area, or from the neck. The Rex shunt allows the blood to flow at a normal rate into the liver, and be processed through the liver as it should. This is a relatively new surgery, and a major one. 

We met Dr. Nathan at Cincinnati Children's on Friday. We truly feel like being here, just a 2 hour drive from Cincinnati, is a provision from God. The Rex shunt is a highly specialized surgery, requiring a surgeon that is both a liver transplant surgeon, as well as a pediatric surgeon. Chicago has been a hub for the last several years for the Rex shunt, and there is a hospital in France that has also performed the surgery, and, thankfully, Cincinnati is another location that has someone, like Dr. Nathan, that can perform the Rex shunt. We were told they have done 15-20 Rex shunts over the last several years. Shew.

The big question is as to whether Judah is a candidate for the Rex shunt. Your anatomy has to provide the "entrance" and "exit" for the Rex shunt. So far, by ultrasound and MRI, Judah looks like a hopeful candidate. We are encouraged. 

We have a genetic blood test to get through first, and then we will get the surgery attempt on the schedule. We won't know for sure that Judah has the right anatomy for the Rex shunt until they open him up. We pray, and ask you to join us, that he will have just what he needs for Dr. Nathan to successfully perform the Rex shunt. 

I will continue to share our journey on here. Thank you for following our story, for providing listening ears, caring hearts, and prayer. We certainly couldn't do this alone. We are grateful for you and to God for ushering us through this time. Though we can be weak, He makes us strong. I see this in Judah. I see this in our home. I'm so thankful for our God who is active in our lives.





Wednesday, December 9, 2015

Edelweiss

Growing up, it was well-known in our house that my Mom adored “The Sound of Music”. Anytime it was aired on television, we were positioned front row, singing along with “Doe A Deer” and “Edelweiss”.


So when Judah was prayed over when he was still snuggled in my womb, and scenes of the movie were beginning to be described as a word-picture over him, it wasn’t hard for me to see it all in crisp, color detail. I was at a women’s retreat with some ladies at my church. We had broken up one night into small groups to pray over each other. The ladies asked to pray over my belly, for Judah, as well. I was thrilled to have him prayed for. One lady began to get a picture in her head as she prayed, and she began to describe the quintessential scene from “The Sound of Music” where Sister Maria is singing, “The hills are alive with the sound of music….”. She said she saw the edelweiss, and felt that, like this mountain flower, my baby would bloom and grow and thrive in harsh places.


And then came Judah.


Judah made a dramatic entrance into the world, almost coming in the car on the way to the hospital, but just making it to be delivered breech, his amniotic sac still in tact, growth restricted, and not breathing. A harsh situation, no doubt. But as the doctor peered over Judah and was about to begin resuscitation, Judah let out a cry and began fighting to breath. He continued his fight. He faced a tough road his first year and a half. We were in the hospital with him every month for the first 6 months of his life. He faced some birth defects, had issues breathing, and needed an emergency blood transfusion. But he grew, and developed, and ooh-ed and aww-ed us as first time parents. He was, no doubt, a fighter, a thriver, despite the tough things he endured as a young baby.

Fast forward to the present...five months ago we had a routine well-child check for Judah. The doctor thought he noticed quite a bit of bruising on his shins and detected a big spleen when he palpated his abdomen. We were sent down to get an ultrasound and blood counts right away. And so began our new medical journey with him, the one were in the midst of currently:  Judah with an enlarged spleen and low platelets.
Over the last five months I think he’s had about 13 blood draws (I’m sure that’s right because Judah counts them and wears that number like a badge of courage. Understandably so, you brave 7 year old boy!). He’s had 3 ultrasounds of his abdomen. We’ve had many different diseases thrown at us as possibilities. We’ve learned about horrific chronic illnesses with no cures that children are enduring that we never knew existed. We’ve met an awesome Hematologist and staff that make us feel cared for and go out of their way to walk us through this journey. We’ve met other patients, most of which are battling cancer at a young age, and had our heart strings tugged at for them. We’ve prayed, and we’ve prayed. We’ve received lots of good news and had several awful potential diagnoses silenced. We’ve been in the struggle of waiting, and we’re still there. His spleen is still too big and his platelets are still too low. All the while, we’ve seen Judah take it in stride, bravely doing anything asked of him, never complaining. And we’ve thought of Edelweiss.


Edelweiss is known for being well adapted to extreme climates. It has deep fibrous roots and  hardy, felt like covering on its leaves to protect it from the harsh extremes of weather, such as drought, wind, and blazing sun (www.edelweissgrowers.com). Because Edelweiss grows in such mountainous areas, it is seen as a flower that is worn more like a medal of honor because of the dangers in retrieving it’s blooms from soaring cliffs. So fitting of our Judah. Though the raging winds of fear and uncertainty are coming against him, he is built, made by our God, to be a boy of resilience, withstanding this tough season.


(http://red-trela.deviantart.com/art/Edelweiss)
A few days ago we entered the hospital lobby for another test and had the pleasure of seeing a harpist positioned up front playing Christmas music. As we waited in the lobby we enjoyed the smooth melodies that filled the room. And as they called us into registration, it began. “Edelweiss” was being plucked on the harp. It was as if God had entered that place, and in all His tenderness, wanted to remind us that by His grace, Judah would be OK. Though he faced more testing, more waiting, more pokes, and prods, Judah would remain a blooming flower, resilient to the storm.

I, as his Momma, can trust that God’s care for Judah is perfect and that He has prepared him for this, and will walk him through it.

Sunday, March 8, 2015

My Morning Pep Talk

Obedience in the small things matter.

That decision that could be good, but you know isn't best? Choose what's best.

That time when you could yet again knit-pickingly correct your child, but you encourage them in what they are doing well instead?  Yes, handing out courage wins.

That moment when you could just growl in frustration over the 1,000th mess of the day, but choose to laugh at it instead? Laughter is an awesome choice.

Those few seconds when you could chose to blame your hurrying on someone else? Yeah, dish out grace this time. Things can wait.

All our little decisions and moments add up. They form our days, that form our seasons, and our lives. They speak of the motivations of our hearts and the direction of our gaze.

Sure we mess up. And I'm oh so grateful that forgiveness and grace are real. But what if we first stepped back to see the bigger picture and walked with a vision before us?

What is your big vision? Remember it. Allow it to help guide you.

Today, and all its little moments, matter.

Monday, September 15, 2014

Faithfulness

My heart pounds expectantly in my chest.

I feel the rhythmic beats sure and strong, quicker than the norm.


May day has been simple. No big frills. No time for frills. But, yes, simple, consistent, faithful is what I seek. And today, I'm seeing it.


I sit with thirty minutes of margin and am having a little party as I have a chance to type these words. Margin is being created, and I'm walking in it. 


It. Is. Lovely.


Sometimes I forget that raising four kids is enough. Sometimes I fail to remember that my mantle looks different than others around me. I see things that are "good" and add them to my "to do" list and figure I'll manage it somehow (everyone else is managing, right??). 


Well, I have a sneaking suspicion that we probably don't really know how "well" things are being managed for others. And truly, all that really matters is if we are doing well with what we have been given. So, are we?


I had to humbly accept that I was not doing well a couple weeks ago. We all walk through different seasons, and it turned out that the season I am in is much more demanding than I expected. And while I love to just try to push on and muster the strength to keep going on business as usual, not ruffling any feathers, or disappointing anyone, sometimes that is just not possible. Sometimes, I just need to humble myself and let go of trying to do it all.


So last week as I stood in a filthy bathroom full of evidence of it's 3 little users, I called my mom. If there was a giftedness in cleaning, she has it. "Mom. I just have to laugh looking at the sad, sad state of my house. Want to come clean it?"


And she did. Because she's cool. Four rooms in five hours. Yes, it was that bad.


And I talked through my commitments with my husband, who is far better at creating margin than I. And I (eh-hem, painfully...) took his advice and pulled some things off my responsibility list. I listened to some dear friends tell me I need to take help when it's offered and received it, knowing they were right, and knowing I would have to say "yes" in the future. Here's to future humbling :)


It feels painful and uncomfortable to be changed. Embracing weakness and asking for help are not things I enjoy. But I do enjoy the end result. I do enjoy the ability to be faithful to what is before me. I am so encouraged to see first-fruits of walking in obedience to the things I know are being asked of me. My life belongs to God, and I want to be more and more like Him on this earth. Change will have to come. Though it's uncomfortable, embracing change is good and right.


I'm celebrating today the hard choices that have been made in the last couple weeks and the goodness I'm seeing as a result. Expectancy is in my heart. Simply being faithful seems quite exhilarating. 

Monday, August 4, 2014

Hurrying, Scurrying, & Missing It

"Mom, did you give me these?" Clara asked me very seriously as she pointed to her eyebrows last night while tucking her into bed.

I chuckled. "Your eyebrows? No, I didn't give you those."

"Oh," she said with a giggle. "Jesus did." Her hair lay in wild wisps around her face and her one dimple on the right deepened.




"I like the way God made you, Clara."

She replied, "I like the way God made everybody....but the mean boys. I like all the girls, and the brothers, and the boy babies, but not the mean boys."

Lately she's been asking for "girl time" daily. She expects her brothers to clear the room and a glorious girly time to be had with barbies, babies, and princess hair.

She has no idea how pure she is.

Looking through a child's eyes takes our focus back to things that are true and simple.

Faith comes easy. God is our maker. He made all things. And He did a good job....except for those mean boys...well, there's an area to learn still more.

Identifying with other girls is right and good for our feminine hearts. We want to be known by other women and we refuel in spending time together.

Hurrying through life can be so commonplace. When the "to do" list is long, task mode is easy. Every night the bedtime routine begins and soon we have teeth brushed, story read, song sung, prayers prayed, and I'm on to the next thing. But there are people there, beckoning, reminding us that relationships are what life is really about.

There is this little girl that is becoming a lady before my eyes, understanding the world around her to a greater degree, nudging me to slow down, and reminding me of what is true.

Tuesday, July 8, 2014

When Beauty Becomes Commonplace...

Today I sat in the midst of Lincoln logs and read a story about a red rocking chair to (semi) attentive ears. I talked with my two oldest boys about their need for new beds because their limbs are just about to bust through the bottom of their toddler beds. Today I explained adoption to my 3-year-old daughter and listened to her very wholeheartedly exclaim, "Well, we need to get a baby girl at the store!" (Maybe my explanation needs some work...:)). 

And in two days my baby turns 1.


My heart feels full, yet heavy, all at once.


I love these years. I never thought I'd love these years as a Mommy of so many little ones, but I do. I seriously can't think of anything else I'd rather do today than be their Mom, and be here with them. I want to soak in these moments. 


Today is a gift. Even in the midst of a sea of oatmeal on the floor, clingy teething babies, mornings starting too early, long bouts of whining, discipline and teaching moments abounding, today is a gift. 


I don't always see it this way, but this milestone of Samuel's first birthday is making me feel a bit nostalgic. It's wild how beauty can be taken for granted when we grow accustomed to it. I become comfortable with this mom thing, and these four little miracles, because doing life with them is so commonplace. I wake up, I see them, I care for them, I feed them (again and again), and I put them to bed. Repeat, repeat, repeat. But there are a million little moments that are awesome in the midst of that realistic portrayal of a Mom's life. I don't want to miss these moments. I want to see the beauty.


I want to soak up all the crinkly noses as they giggle, the smooth feel of their skin, the tender, honest words as they articulate their hearts, the look of pride in their eyes when they see you try your best. I can be so tempted to move on to the next thing, and miss the beauty before me.








I'm challenged, yet again, to keep counting my "gifts". I need to stop, and record, and acknowledge the sweet moments, the graces, I've been given. Active thanksgiving fights to keep the true beauty of life afresh. I see I have to fight harder than I thought. To develop a heart that is continually offering thanks, I must go beyond journaling my "gifts" for a year. I want to live a life of thanksgiving, not just a committed year. My eyes dart to and fro and my heart settles in less-than-lovely places. I want to persevere to see the goodness, to live thankful.


I'll be pulling out my thankful journal again today to actively seek the beauty in my days. For today, my heart feels like it may explode seeing all my gifts and the only thing fitting is to give thanks to God for His goodness. 


Yet I know days will come when goodness will be hard to see through the muddle of my dark thoughts. On those days, too, the only thing fitting will be to seek the beauty and give thanks. 


1 Thessalonians 5:16-18, "Rejoice always, pray continually, and give thanks in all circumstances; for this is God's will for you in Christ Jesus."


Tuesday, March 18, 2014

Why Homeschool?

A facade often times appears, I'm afraid, when it is discovered that we're a homeschooling family.

"Oh, you must be so much more patient than I am!"


"Did you study education?"


"Your kids must listen to you so well!"


Well, actually...nope, not by a long-shot, patience may be the least of my virtues; and no, I've never taken a single education course; and sometimes my kids listen very well, and frankly, sometimes everyone is just screaming around the table, trying to be heard.

These are not the reasons we homeschool. It's not a choice made because I am so patient, well-prepared, or have the best behaved kids around.


I'm blowing my cover. It's pretty messy, really.


It's all about learning to flex and bend and to persevere when the going gets tough.


It's throwing out some curriculum because it is absolutely not making things click for your child and going on a mad search to find one that will.


It's about lessons being interrupted by real life issues, in a real home, when the toddler needs help on the potty, the baby needs nursed, and the dog threw up, again.


It's about trying to gather yourself when the attention spans of two brothers just wanting to play Superheroes is seemingly nil.


It's about feeling anything but competent after trudging through a rough week of work and having to discipline yourself to sit down and remember how far they've come. Yes, something must be going right...


But, at the heart of it, homeschooling is about so much more.


It's about time in these fleeting years to do life together. I see the milestones accomplished and I am a part of them.


It's about deepening our relationships with one another. I see brothers working towards goals together and experience the gratitude shared when our laboring together results in new victories. 



It's about learning to function well together as a family. When "life" happens and needs other than our lessons must be addressed, we are learning the importance of looking out for the interest of others. We need each other to function well, in our family, in the body of Christ, and in the world. 




It's about enjoying learning, together. To be honest, I was a good student, but not a happy learner. Learning would have never been described as "fun" to me. And now, with my kids, I'm experiencing that learning can be fun. Phonics can go beyond worksheets and flashcards and be explored through silly hands-on games that reward memorized facts with a ninja move, or by cuddling up on the couch all afternoon diving into real books together. It's pretty amazing.

It's about embracing the freedom to invest our time and attention how we desire, and in the things we value. Some days we learn the value of stretching a dollar as we find good deals together at the store; other days we have an impromptu "field day" because spring decided to show up after a long winter; and other days our lesson is actively loving someone for their birthday as handwriting, cutting & pasting, phonics, and cooking are all encompassed in the midst. 


And it's about having the time to freely address and cultivate the work God has begun in each of their hearts as days go along. Days like this happen, and there is the opportunity to dig deeper and see God move.


I wrestled to make this decision to take on the mantle of Homeschooling. Doubts piled high regarding my ability to do so, and besides, I knew very little about taking on such an endeavor. I wasn't homeschooled. I only knew one homeschooling family in my town growing up, and frankly, I thought it was just weird. The whole idea felt way beyond me for some time. 


But I just couldn't shake it, a tug in my heart, that this would be our route. So I read books, met with other families who have gone before us, checked out blogs and pinterest ideas, met many other normal, non-socially-awkward homeschooled kids, and have landed here, a Homeschooling Momma, for better or worse. Not because I'm such an awesome, gifted teacher, not because I'm a saint of mommy, and not because my kids are super obedient have I arrived here. I'm homeschooling because a conviction developed that this was best for our family, for all of us. 


My great love for my kids and the deep desire I have to see them do well will propel me to provide the best I can for them. My great God, who dishes out grace in abundant measure, will help me do well. I'm gonna miss it some days, over some material. That's OK. Is our Education System always perfect? Nope, nothing is perfect. 


And my end goal is not to have the best educated, academically superior kids around. In the end, I want to have given myself to these four lives, investing in them, doing life with them, discipling them as we go. I want to see God accomplish the work He has begun in them first and foremost. Yes, education matters. Yes, I will give myself to providing them rich material and encourage them to be great learners. But I see it as an awesome freedom to be able to have the time we have together and to be their teacher.


It's not the only way, but it is a legitimate way. It is our way.


So don't be fooled. Even if you don't feel like you're the poster child for a Homeschooling Momma, you very well could be. If you would have been able to tell me my current station in life ten years ago, I would have laughed at you. Homeschooling my kids? Riiiight... 


But, it's me. And I'm really happy it's me. So forget the denim jumper that you think you may have to wear, do not fear socially awkward children, and do not doubt that God has equipped you to parent and teach your child. It could be your way, too.