He is Holy: Jonas' Journey Through Medical Issues

I was anticipating the trial. Every day I felt the flutter in my stomach at least once. Regular conversations were almost impossible for me to have. My son was going to be having open heart surgery within a week. 

Everything I learned about open heart surgery, I learned through walking my daughter through it when she was almost three years old. Thankfully, I am a realist by nature, but it was still the most gut wrenching journey, and my husband and I had some noticeable PTSD afterwards. We still get jumpy sometimes about her health, to be honest, and it has been three years. I watched her fight every medical professional as if they were the enemy rather than the pain/fear. I also watched her oxygen saturation suddenly drop down into the 40’s while they reintubated her during the rough recovery. I saw the light in her eyes go out for weeks after that. I knew that the challenging road of surgery and recovery took absolutely none of my efforts, and I could only rely on my God. I gave up. We could pray, and we could trust God to provide the best medical care. Basically, I had no control whatsoever. 

Thankfully, we serve a God who intervenes.

My mom and sister came over to help me write out a packing list for Boston, because I didn’t even trust myself to be able to come up with that during the anticipation. My brain just wasn’t working very well. We weren’t naive to what would happen this time. Friends and family poured out blessings on our family through prayers, gifts, hugs, words, and cards. Physical weakness flooded my entire body during each act of kindness that was shown to us during preparations. We were as ready as possible, and I was tired of all of the anticipation at that point. I wasn’t going to get any stronger. “Faith over fear,” was my motto and inwardly I was just whispering to Him to get me through it.

We were finally on our way to Boston. Our son had his fourth birthday celebrations, and then to the hospital we went! His first day of appointments went well; he is just so easy with medical professionals. Second day was the sedated cardiac MRI, and we actually didn’t realize they were going to be using anesthesia, but we accepted it. The goodbye was difficult; I couldn’t believe how much harder it was going to be the very next day, the day of his surgery. It seemed like a trial run for all involved.

Halfway into it, the cardiologist called us into a room to tell us something. They had found two spots during the MRI incidentally, one on his brain and one on his spine. All of the air left the room. Our hands shook and we just wept. This was a game changer, and the doctor didn’t have words of comfort. We held onto this information, as we saw no reason to alarm the grandparents (who were in town to help) at that point. We had no answers! We were suddenly thrown a curve ball, which was not the first time our son’s anatomy had caused that. We waited and waited, but answers were not to be that day. We went home with even more questions, and we told the grandparents and our prayer warriors. 

Surgery was postponed for one day. We had to be on call to come in though. The cardiologists worked their magic in speaking with neurosurgery, and they pushed us into a brain MRI. All of the waiting included not knowing if our little buddy was going to actually have his open heart surgery the following day or not. 

The neurosurgeon called me (finally) late that afternoon (the afternoon before surgery was now scheduled). They apologized for keeping us on pins and needles. Basically his brain issue was not going to be a major one, although we needed to schedule appointments after he healed up in a couple of months. He was cleared for surgery! I felt as though I was living out 1 Corinthians 12:9, “…My grace is sufficient for you, for my power is made perfect in weakness…” We were just so weak and helpless.

We celebrated, albeit only with reservation. Our son did not have a major issue going on in his brain/spine! We were rushed in to speak with cardiology. Finally! The surgeon took a long time explaining his reasoning before dropping the bomb that we were not actually going to be having open heart surgery the following day. We would be continuing to wait and watch his valve, and in the meantime he could get older and stronger!

Not. Having. Surgery. 

We did not have to go through it just yet. And we did not have a significant, alarming issue in his brain/spine either. The brain/spine issue wasn’t enough to prevent major surgery from happening either. It felt a little like the best of both worlds. Our omnipotent, omniscient, and omnibenevolent Savior knew this all along. 

I am still processing everything that happened. It doesn’t seem possible that God intervened as much as He did. But He did. We traveled to Boston thinking that it was for aortic valve surgery on his little heart. But God knew the actual reason we traveled to Boston was to uncover this new issue in his brain/spine that we would’ve never discovered here. (Only Boston does cardiac MRIs regularly on kids like him, and even then they only do it right before a surgery.)

Somehow, we got there for the reason we needed to be there. And it was not the reason our ENTIRE community was praying for us constantly. It wasn’t the reason the doctors were poring over charts and data for us. It wasn’t for the reason that made my stomach churn for a month prior to our trip. It wasn’t what anyone expected, and yet God knew.

The roller coaster was intense, but God aligned it all to work in the way He ordained. It was not about us, and it was not about our child. God’s handprint was all over this entire thing. It was almost difficult to embrace His divine intervention. We were still working through all of the facts and trying to get it straight in our heads when we flew back home. I had no energy for at least three days as my mind and body recovered from the trip’s events. He blew me away.

My heart and mind have been reminded of His absolute sovereignty. If He knows the number of hairs on my head, why should I be surprised by such obvious intervening in my life? Do I believe the things I think that I believe? God, teach me more about You.

He isn't always going to give us the best of answers, and sometimes the news can be hard. But I’ve rediscovered His absolute, majestic power. He is in control, which is why worry is so pointless. I will pour out my soul to Him, my Creator and Father, and then I will let it go. I’ll let go of the tendency to want to fix everything. I am powerless to stop the Almighty God who spins the planets in their orbits. He who separates light and dark and nurtures the dry ground by sprinkles of rain. He is the One. I am not, the doctors are not, and my kids are not. 

Look today for ‘God-winks’. He is there, always. He waits for us to notice how miraculous, how incredible, and how massive He is. He waits tenderly, not demanding our attention. He delights in us, and He alone is to be worshiped. God waits to wow us. In what aspect of life are you experiencing anxiety, stress, or fear? Maybe that is the very area He is about to rock. Maybe what you thought to be true actually isn’t. Is it possible that His plans for you have yet to be revealed and that you are worrying for absolutely nothing? 

Is it possible that you are going to look back on this time of trial and be in awe? Maybe you’ve dotted every ‘i’ and crossed every ’t’ so as to avoid anxiety; maybe you’ve made lists like my packing list. Maybe you’ve felt an overwhelming sense of weakness when you even begin to think about what lies ahead of you. God is not done with you, though, and He’s not to be ignored. God can and will do as He sees fit. His power is unmatched, and He proclaims it. 

“The heavens declare the glory of God, and the sky above proclaims his handiwork. Day to day pours out speech, and night to night reveals knowledge.”
Psalm 19:1-2


This absolute power and control that God has over everything relieves me. It teaches me to worry less and live more. I find peace in Him, for He cares for each of us excessively more than we can even know how to care. That even includes His care for our families. He has proven this to me time after time after time.

Our children are ours because of the miracle of adoption. I use the word ‘miracle’, because, as anyone who has fostered or adopted can attest to, God makes His presence known in this area quickly. If you’re in a place that is spiritually stagnant and you can’t see His many evidences of massive power and work in your life, I encourage you to think about taking a step of faith. Do something. Take a risk. I don’t mean specifically by adopting, but adopting for us was a big step into the unknown. What is your unknown? God is ready to show off His majesty. Let Him! Step aside. Put yourself/your fears aside and DO the thing you’ve been scared to do that the Holy Spirit just won’t release you of. God answers prayers, the faithfulness of the Father is unmatched, and He will make His power known in your very weakest times and in the most surprising ways. 

“Holy, holy, holy is the Lord God Almighty, who was and is and is to come!” Revelation 4:8b

Merry Christmas!

Heart Awareness Month

I wrote the following for two blogs that raise awareness for kids with CHD...

Wednesday, February 1, 2017

Day 1 - Willow & Jonas

I want to start by saying that our miracle children astound me. We love them personally and uniquely. Their birthparents are revered in our home; we thank God they had the courage, strength, and compassion to have them and keep them safe.

I married my college sweetheart. Kyle is way more incredible than me; I serve a gracious, good God! What a gift I've been given in my husband of nearly ten years. We worked a couple of years before deciding we wanted to become parents.  We had a season of struggling to conceive followed by a new and exciting desire to adopt. I mean, switching gears to adoption sparked something so new in us!  We tried for almost five years to conceive a biological child, and then stopped.  All of our stress slowly melted away.  God had a plan for us all along; we only had to let go of our preconceived notions of family to allow for His agenda to come alive.  Over the course of those five years, over three were spent in infertility treatments and we had one miscarriage.  During infertility, it was like we couldn't grieve like we felt we needed to because there wasn't an actual loss of life.  After miscarrying, we felt free to grieve, and God soon changed the desires of our hearts.  Our dream shifted; we knew adoption was the right path for our family.  Looking back, I feel beyond blessed that we experienced the pain of not having a biological child.  I now feel able to deeply, uniquely empathize with our children's inability to be with their birth families.  Also, I would not know and love my incredible kids if it were not for that season of infertility.  It pushed us to go through all of the hurdles of adoption.  Willow and Jonas are uniquely our little loves; no one else would do!  

When we found out each time that they had complex CHDs, we grieved. We grieved as a parent does when anything is physically wrong with their child. It also caused us to develop a ferocious protectiveness in our love for them. Although we don't want our kids to walk through sadness or pain, we believe God does not make mistakes. There is purpose in the pain.  He is not only the Creator but the Great Physician; these heart 'defects' are not at all defects but are a meaningful trial meant for my children and for us.  We look at our children and see how perfectly and wonderfully God made them.  Sometimes I cringe when people say to an expectant mom, "Who cares if it's a boy or a girl, as long as they're healthy!"  I understand the sentiment, and at the same time I am so profoundly changed by watching my heart warriors fight to live.  Their complex anatomy is difficult, no doubt, but it is purposeful and beautiful.  They inspire me and so many others, and we wouldn't change one thing about them.

The more I know about congenital heart disease, the more my mind is blown at how hard they fought before joining our family. Specifically, when we grapple to understand our kids' complex hearts, we all - cardiologists included - are taken aback. There is a resilience to my kids that can only come from a hard start, physically and emotionally. Spend any time with them and you'll understand! Watching them soar as they continue to grow has been the joy and privilege of our lives.  

At the beginning, we were not open to special needs. We were not open to toddler adoption either. It's funny to me and so relieving now that my kids are in our arms. God taught us by moving us toward our children in baby steps. "You can't conceive? Consider these infertility treatments. Your heart isn't in it anymore and the loss of miscarriage has you aching? How about adding a child through adoption? You don't think waiting for infant adoption is the right path for you two? Think and pray about international adoption. Think you are at peace with adopting a toddler from somewhere like China? What an adventure! How about a baby who needs serious medical intervention?"  The decision process to adopt two toddlers with complex CHDs was obviously slow and cautiously maneuvered, but that's about how it felt (only much more gradual). I cannot imagine if we had not taken the risk. I never, ever want to imagine the alternate life we could be living. We believe God aligned all four of our circumstances to bring us to each other and give this gift of restorative, unconditional love. We live the good life with one another, and we fight all our battles together in this household.

Our daughter, Willow, is four years old and now thriving.  Willow Mei had L-TGA with various other heart defects as well that allowed her to survive nine months with no interventions at all.  Every doctor that meets her calls her a 'fighter'.  I mean to say, she doesn't want them touching her!  That fight she has is what kept her alive.  When we met, her oxygen ranged from 65-80, but you wouldn't have known she was sick.  She can make anyone smile!  She's intelligent and very verbal, and she has an independent strength that somehow mixes with her deep dependence on us as her parents.  When we said yes to her, she was 16 months old and her file didn't look great.  We were terrified we would finally have a child only to watch her suffer and fail to thrive.  We got off the phone with the cardiologist who viewed her file, and we both cried.  We knew it was the tears of a mommy and a daddy.  When we said yes, we thought her best chance would be getting a Fontan surgery which is considered palliative since it would've meant only one ventricle in her heart.  She had surgery one year after we adopted her.  Her incredible surgeon and the team around him were able to give her a Hemi-Mustard Rastelli, so our girl now has one and a half ventricles!  Her energy increased majorly after the season of recovery from surgery.  This was a dream come true, and it was no cake walk of a surgery.  It was absolutely terrifying.  Our cardiologist had assured us that she would absolutely have some complications; the likelihood of no complications was very slim.  By the grace of God, the complications that we had during those long hours of her surgery were complications you'd prefer if you had to choose in her scenario.  Once she was off the ventilator, she aspirated into her lungs, and we had two very scary events in ICU post operation.  She was re-intubated, and we were all slightly traumatized.  She withdrew from that point on at the hospital, and not until we got home did we start to see little peeks of our precious girl's vibrant personality again. 

About four to six months after surgery, once we could breathe again and our girl was mended, we began to notice something.  We were incredibly jumpy regarding her safety.  We would lash out at one another after little accidents occurred which was highly unusual for us.  We began to understand that we had some minor medical PTSD from watching her fight for her life.  Our jumpiness at anything related to her safety was our way of processing that difficult surgery.  Once we understood what was happening, we were able to communicate about it respectfully and eventually we felt less and less of those effects.  I want to be frank about this, because it's something that happens after long hospital stays.  We were only at the hospital for twelve days, and then we had to be rehospitalized for pleural effusions.  I can only imagine how much more intense it is for those who have longer stays.  However, just like you can imagine, we were able to see life with new appreciation.  We thanked God for the breath in our lungs, for the beating of our daughter's heart.  We didn't care about material things, and we didn't care about trivial matters anymore.  Every single day, we felt such gratitude for our doctors, for our daughter's healing, and for God's hand on her life.  We were given perspective, and that's a beautiful thing to have.

We didn't anticipate our second child having a similar heart defect as our first. After walking through the fire with our daughter during her open heart surgery nearly two years ago, we didn't anticipate adopting another child with such a complex need. However, we were open to minor heart defects and decided that knowing and trusting our cardiology team in and of itself was a great reason to become parents to another child with this need. We had a team ready and waiting to go! As if we could 'order' the Creator around, though, we requested (through our social worker) that the need be not as serious.  

The need was nearly identical, at least from our untrained perspectives.  Jonas had D-TGA with other heart defects that kept him alive three months before his first surgery in Nanjing, China.  He had a complicated surgery there: the arterial switch.  Our team of doctors was very impressed that this procedure was done on him prior to him coming home.  Our sweet son is curious, and he's a hugger!  He wants to do everything his big sister does, and he is rarely fearful which is a tremendous blessing during medical appointments.  If we find something out of place, we know who quietly moved it.  His giggle is completely contagious just like his sister's.  They complement one another so well.  When we first adopted her, she was learning words at a rapid pace but not wanting to move around much.  He's been the exact opposite; he's all over!  She teaches him so much, from the alphabet to the concept of family.  He has taught her to be brave and climb the tallest towers.  The transition was far from seamless in adding a fourth person to our crew, but the struggle to adjust has made the result even sweeter.  

Currently, Willow's heart is looking fabulous, but Jonas is in a holding pattern.  Holding patterns are so hard; sometimes it is all I can think about.  I wonder when we will suddenly be told that it needs to happen soon.  We get check ups all the time.  There is no need for emergency surgery at this point, but he will need open heart surgery to repair his aortic valve before too long.  We have sought three opinions and have heard four different options.  The issue our son faces is rare.  After going through such complicated and scary surgery with Willow, we weren't about to do something complex without hearing several surgeons say that was the best option.  We've decided at this point to wait for his aortic insufficiency to cause his aortic valve to nearly completely fail before operating.  We are grateful that one of the most aggressive hospitals in the country has assured us that this conservative approach is best.  They will then go in and attempt to repair his aortic valve in hopes that he doesn't have to get an artificial valve.  There are several back-up ideas if that surgery doesn't work.  We are so very thankful for options.  What wonderful medical assistance we have in this country.  We consulted with a hospital that is 1,761 miles away from us without ever leaving the comfort of our home.  Technological advances and medical knowledge and precision has greatly influenced the quality of life for my children and for others with CHD.  What never was possible is now possible!  People are living out their entire lives with major and complex heart disease.  The online community allows for connections between patients all across the world, and people are getting heart repairs that save lives because of those connections. 

What an incredible time to be open to parenting a child who has a complex CHD.  The resources are out there.  Not only are there babies who need families; there are children dying and desperate for medical interventions that are basic procedures in western hospitals.  I urge anyone reading this to open their heart to these beautiful children.  If you cannot adopt a child with CHD, pray about how you can get involved.  Support organizations like Little Hearts Medical, OneSky, and Show Hope.  These organizations not only rescue children and seek to find families for them; they save lives.  My two babies are prime examples.  Go into children's hospitals and witness the will to live, the strength of a heart warrior.  

They are fighters.  They are stronger than I'll ever be.  They've changed my life forever and for the good.  Because of their struggles, they can enjoy the good times more than most of us.  There's something in the spirit of a heart warrior that will change you once you get to know them.  Walking my children through medical stuff is the greatest privilege I've ever been given.  I am who I am because of how they inspire me.

I am the first to say that this family dynamic isn't for the faint at heart.  However, we've found that God gives us strength.  We don't summon up our own strength to get through things.  We rely on Him together as a family.  If we relied on ourselves, we couldn't do it.  We never even would've tried.  There is nothing more fulfilling than living out God's call for our lives, however difficult at moments.  We were meant for this, and the love we enjoy together as a family makes life remarkable.  

Mid November rant...

Something in me is forcing me to write today.

I don't want to.  I wish our story wasn't playing out like this right now.  I struggle to find the right balance of being positive and being honest.  This is probably going to be too frank; maybe I'll come back and edit it to sugar coat it.  The one thing that my body and mind screams at me to do is to write.  So, because this is very helpful to me in my stressed state, here I go.

I've learned from having two kids with complex heart conditions that a couple of days before an appointment, I kind of lose my mind.  As Willow and I say sometimes (don't ask me why!), "I lose my bananas!"

Jonas has a second opinion Friday for his aortic valve.  His primary heart defect was transposition of the great arteries, which he amazingly had repaired in China at three months old.  I am so grateful he was young enough that maybe the pain was easier to bear.  I owe it all to the nurses and nannies who helped him recover when we could not.  Words cannot express how I feel toward anyone who showed kindness and compassion to my kids during those early surgeries.  I don't know them, but I long to pour out never-ending gratitude toward them.

And so, even though we knew our kids could have complications and would need life long cardiac care, we assumed that for now he wouldn't need anything.

That assumption was backed up when we met him and he was wonderfully relaxed and happy and healthy.  He has grown so much since joining our family; he's now nearly as tall as Willow and outweighs her at 30 pounds!  His lips were bright pink; his oxygen saturation exactly what it should be.  What an incredible little fighter of a boy who, despite some very difficult circumstances I couldn't handle myself as an adult, has the most contagious joy ready for any and all wanting to share in it.

The past few months, our cardiologist (who calls us family and has walked through the fire with us) has had growing concerns.  Every subsequent appointment, I could see the look on his face growing more and more solemn.  He kept needing us to come in for more tests.  We came, and every time we went, my fear grew.

Surgery to repair his aortic valve (which is bicuspid instead of tricuspid) is on the horizon.  So, now we wait in dreaded anticipation for a second opinion.  Willow's surgeon and our great friend, Dr. Forbess, has moved out of state.  Two other wonderful surgeons we could've used have also moved out of state.  Jonas' aortic insufficiency is in full swing; he is beyond what an adult's valve failure would be before having valve replacement.  They've been wanting him to grow before an intervention.  For many reasons, I have been crippled with fear that we've waited too long.  There are a couple of options for him, and none of them are great for a two year old, but they will have to do.  This means an open heart surgery, and it is way sooner than we expected it.

We are now over a year away from Willow's scary surgery.  My warriors went through this all alone before us, so I'm incredibly thankful to get to walk our kids through such a trial.  In fact, this valve issue would not have been found if he were still in his nanny's care in China; they were no longer getting check ups for his heart since he seemed well.  We don't want to do this.  Everything inside of me resists this.  I'm resisting God's plan here.  I'm unbearably anxious as I recall the traumatizing events of Willow's surgery and recovery.  I don't want to put him through this, and this time around I know way more hard truths about it than I knew the first time around.  I know how hard it is going to be for all of us.  I know that even Willow will struggle at home with feeling afraid that we aren't there with her.  I know Jonas will experience pain and confusion and fear.

So I just want to say, I choose faith.  I cannot say that it's coming naturally to me right now.  For this moment, I'm choosing it though.  I am not trying or wanting to fight this plan of God's, but I am fighting it with all that I am.  I feel anxiety and despair creeping up in me, and then I hand my burdens over to my prayer warriors who lighten my load more than they know.  Thank you.  I've needed your strength.  God hears our prayers when we cannot even utter them.  God wipes tears and waits patiently with an outstretched hand for me to place mine into His, trusting Him.  So, for small moments each day, I do reach out and let him lead.  I let Him soothe me on occasion.  I surrender tiny moments in hopes that I can surrender the fuller picture.  I fight for my faith until I realize that I don't have to fight.  He is always with me no matter how I ignore Him, He is always for me no matter my perception, and He is the King who reigns over all.

I choose to accept what is happening.  I choose to believe in the very best outcomes.  I choose to acknowledge our disappointment over our surgeon moving as hard but as God's sovereign plan somehow.  He has carried my kids through so much that I don't even know about.  He has carried us through pain and suffering and trials.  He has redeemed us from our own lostness and washed away all our sin.  I can't resist this plan, and I don't want to resist this plan.  It's okay for the moment for me to be utterly powerless.

God, you are working miracle after miracle in my son's life.  Help me when I don't believe well.  Give me strength to fight the good fight of faith.  Bless the minds and skills of any doctor we come into contact with, as I know You will.  You are always good.  You bring healing and life.  Help us as we encounter the unknown with Jonas' surgery on the horizon.  We place all of our lives - everything - into Your hands.  Mighty one who saves, You are beyond worthy of our praise.  Move in us so that we can respond in a way that brings You honor.

You hold Jonas in Your loving, sheltering arms.  Keep our baby safe and healthy; I know He is Your baby, too.  Help us as we walk this path.  Amen.

Family Reunion & Father's Day

One thing I love is when Jonas says 'puppies' or 'pippin'.  It comes out sounding like 'puppum'.  I also love that when he sees me or Kyle after we've been gone, he says 'Dada!' excitedly.   You would think that would drive me crazy with him calling me Kyle, but it's what he learned as an expression of joy upon seeing someone he missed.  He says it every evening when Kyle gets home from work.  It's very sweet!

Still trying to catch up with photos.  Walton Family Reunion 2016!

We took the kids to Fossil Rim Wildlife Park...

Jonas threw his baby out of the window, because he kept seeing us throw all of the animal food pellets!  I actually broke the rules and jumped out to grab it.  He loves that baby.  

Snow cones before we go...

The kids were zonked out after the family reunion fun!

Father's Day - Kyle's first one with a SON!  We got Daddy a globe for his desk, and he already started teaching the kids geography.  I adore him.

Special lunch out, Daddy's choice!  (Chiloso)

The little blue eggs hatched, and we had tiny baby birds on our hanging porch plant for a while!

This kid just FINDS things!  These are my old glasses.

They jump in the crib together to bond!  

Kindermusik dress up day...

When Willow is up while Jonas naps, we have so much fun with big girl things (like glue or board games)!

Joy (our awesome social worker) has been a huge blessing in our lives.  She will still come around to visit us and check in on Jonas post-adoption.  However this was Willow's final visit (2 years after adoption).

Play date with precious friends...

Sensory play day at our library...

I love Uncle Lee!

She is still so in love with these pajamas...

At a random store during a showing!

Let's get frozen yogurt while we are out.  I swear I very rarely cooked during the month of showing our house!