As I mentioned in the closing of my previous blog, Diamonds, we have been to quite a few doctor appointments in an effort to put together the puzzle pieces of what all is going on with Hezekiah's body. Last week was a Medical Marathon and I am pleased to report that we ran it like seasoned veterans. We head back to Children's Mercy in Kansas City this Tuesday for a couple more appointments and then I think we actually have a few days off.
Many have wondered what all is going on with our sweet babe (so have we!), and I want to take this opportunity to share some of what we do know. My hope is that you will use this information to pray specifically for wholeness and health for him, but not as a measure by which to limit him or set a lower bar of expectation. I fully anticipate seeing God glorified all throughout his life. Sometimes this will come in the form of medical miracles. Other times it will come in the form of the endurance and grace with which he runs the race set before him.
Hezekiah was born with several anomalies. This just means differences from what is normal, standard, or expected. There are the apparent physical anomalies that can be seen with the human eye:
Bi-lateral cleft lip
Complete cleft palate
Syndactyly of his left hand (three fingers fused together)
Ectrodactyly on both feet (missing toes, sort of 'pincher' feet)
The collection of these differences indicate that some other problems likely exist below the surface, so Hezekiah endured a battery of exams and tests while he was still in the NICU at birth. While there they discovered some problems with his heart and kidneys, but those have since cleared up/healed and appear normal. Yay, Lord!
They also drew blood for chromosome and DNA testing to check for possible syndromes. We have not ruled out all syndromes yet, but his chromosome test and micro array test both came back normal. We will meet with the genetics clinic at Children's Mercy in Kansas City on Tuesday and discuss what it looks like to begin testing specific genes and looking for a distinct genetic disorder that can account for all of the various differences. This would help give a road map for Hezekiah; we could watch for other problems that might arise due to an identified syndrome or genetic disorder, and qualify for special therapies and treatments as well as financial assistance to cover the cost of his medical needs. We will learn more about that on Tuesday.
An ultra sound led to some suspicion about the corpus collosum in Hezekiah's brain so they did an MRI (at this point, this is all still in the NICU). They discovered that he has agenesis of the corpus callosum, which means it only partially developed. There is no cure or treatment for this and it will not develop any further outside of the womb. The CC is the piece of the brain that communicates between the left and right side. How this will affect him specifically is unknown, but it most commonly affects coordination. Effects can range from subtle/mild to severe. Some who have ACC struggle a great deal to overcome its obstacles, while others live their whole lives only knowing it is there because they were told by a scan that it is. We are already doing some physical therapy to help teach his brain how to work around its deficiencies. God made the brain to be quite an amazing piece of biology and it can compensate for problems or injuries in ways science can't fully explain. We could curl up in fear while scouring google about all the potential worst-case-scenarios, but we won't. And we won't let anyone else do that for us. Woe to the person that attempts to limit what our little man can do or utters a single word of dismay about his life. I really mean that.
Woe. to. them.
Our endocrinologist has said to me more than once "Don't let doctors or anyone tell you what your son cannot do."
I couldn't agree with her more.
Doctors are not writing his story.
We are not writing his story.
The Author of Life is writing his story.
Since the NICU we have continued to uncover other underlying differences. Currently, Hezekiah has two other identified diagnoses:
Panhypopituitarism - he is lacking in more than one of the 8 hormones produced by the pituitary gland. (One of the things our recent MRI looked at was the pituitary gland, but again-no results until the 21st.) One of those hormones is cortisole. This is a very important hormone for him for several reasons, but especially for sedation. Thankfully, we can manage his hormone deficiencies with hormone replacements. It will take special attention throughout life to do through supplements what the body is meant to do naturally, but not impossible.
Diabetes Insipidus - this is NOT the sugar/insulin diabetes we are most familiar with. DI is a disorder that causes an imbalance of water in the body. This was discovered because of high levels of sodium in his blood and through urine analysis. Without medication people with DI experience intense thirst (even after drinking water) and large amounts of urine. It can easily lead to dehydration. There is no cure, but there are treatments to help minimize the symptoms. Thankfully we are only doing a very, very tiny dose of medication right now and he doesn't appear to have developed noticeable symptoms. We have to be careful with the medication. Because people with DI are used to high levels of sodium a sudden drop in those levels can result in seizures.
Both of these conditions are manageable with medicine, but will always be something we monitor closely and have to advocate for whenever he receives medical care. Thankfully we have an absolutely AMAZING Endocrinologist. She is phenomenal and cares a great deal about our son.
We expect a typical life for Hezekiah.
We hope the very best for him.
We will speak love and life over him.
We will help when things are more difficult, but always empower him.
We will cheer with him when he reaches milestones-no matter when he does.
We will sit and cry with him-or for him-when the challenges or medical treatments feel too much to bear.
We will help him rise up from the floor and press on.
We will teach him to rely on Jesus.
We will praise God. Every moment.
We will let God use Hezekiah's beautiful life to change and shape us and others around us.
We will tell our stories so that God's glory is revealed.
We will protect Hezekiah-like fierce mother bears-and we will silence the ugly that comes out of people's mouths or shows up on their faces. We will not let people speak down to him or curse his bright beautiful future.
We will continue to be certain of the fact that God created Hezekiah with purpose and meaning-just as much as anyone else.
His future has lots of unknowns for us, but not to His creator. This brings us incredible peace. There is not a day His Maker has not seen, and He will never leave Hezekiah. Not for a moment.
On Tuesday we will get a few more answers, but most likely just more questions. We will first meet with genetics clinic and then with neurology. We know for sure that we will learn about what they saw with his pituitary gland and with his optic nerves. There can be some potential problems with the optic nerve since he has midline defects, but no sense in explaining those until we know.
Meanwhile we are looking forward to finalizing his adoption. There are a few things that have to happen for this to occur:
-Two post placement visits with a social worker (approximately $400)
-Sending two medical reports to the agency
-$7,500 payment to agency
-$2,000 in finalization fees
God has been so faithful in his provision!
In the last two weeks we got approved for a $2,500 grant from Perfect Graft, Inc. and a $5,000 matching grant from Lifesong for Orphans.
A Perfect Graft will make a $2,500 payment to the agency on our behalf.
Life Song will collect tax deductible donations on our behalf and an organization called Aim5 will match those donations up to $10,000. So someone gives $50 and it instantly becomes $100 towards our expenses. Woah!
This is a HUGE blessing, because not only will that help with what we still owe, but we can use it to pay off the $9,500 of debt we have incurred so far.
We also got started with 35kcampaign one month earlier than expected!
For all these things we Praise God!
If you feel led to help us click here to learn about how to make a donation to our matching grant.
We continually feel the reassurance of our Father and His goodness. There may be many missing puzzle pieces and several moving parts, but God's timing is perfect and He IS sovereign. One of the most incredible parts of this journey has been the many real-life "trust fall" exercises, because God has called so many different people to step out of the wood work in our lives and catch us. Sometimes people we could have expected and many we would have never guessed. I will forever be grateful for all of these people who have, quite literally, carried us forward in this journey. I know some of those people who have helped or will help will be reading this blog and I hope you know-YOU are a treasured piece in God's story for our lives and we pray God's richest blessings on you.
Monday, June 20, 2016
Sunday, June 19, 2016
Make checks payable to Lifesong for Orphans.
In the memo please note your gift preference with our Family Account Number and Family Name:
Like this: Preference 6113 Waldron
Mail checks to:
Lifesong for Orphans PO Box 40
Gridley, IL 61744
1. Go to www.lifesongfororphans.org/give/donate
2. Select Give to an Adoptive Family
3. Complete online form and fill in Family Account Number 6113 & Family Name Waldron.
2. Select Give to an Adoptive Family
3. Complete online form and fill in Family Account Number 6113 & Family Name Waldron.
o NOTE: In following IRS guidelines, your donation is to the named non-profit organization. This organization retains full discretion over its use, but intends to honor the donor’s suggested use.
o Individual donations $50 or more and yearly donations totaling $250 or more will receive a tax-deductible receipt. Receipts for donations under $50 will gladly be sent upon request. Lifesong is a 501©3 tax exempt organization.
Tuesday, June 14, 2016
“The formation of natural diamonds requires very high temperatures and pressures. These conditions occur in limited zones of Earth's mantle about 90 miles (150 kilometers) below the surface where temperatures are at least 2000 degrees Fahrenheit (1050 degrees Celsius)…[The diamonds] are delivered to Earth's surface during deep-source volcanic eruptions. These eruptions tear out pieces of the mantle and carry them rapidly to the surface.” Geology.com
God has used our adoption journey to produce some serious diamonds in me.
I've struggled with anxiety for most of my memorable life. When I was 11-years-old I switched from a private to a public school in a new town for my 6th grade year. I started experiencing a 'sick feeling' whenever I would arrive. I felt like a thin wire or string was around my neck and I would pull at the collar of my shirt to create 'space' around my throat. I would gag until it increased into dry-heaving and sometimes actual vomit. I would go home from school sometimes, because I really did feel sick. After repeated events, my mom would take me to the doctor and they would ask me, "Are you experiencing any stress or anxiety?" I would say no. I was 11-years-old and had a limited understanding of stress and no clue what anxiety was.
Adoption is not a simple process. Until you have experienced it, I can only barely describe the amount of paperwork and documentation required, let alone the emotionally and physically draining process from the beginning all throughout. It is all so. much. work. If anyone ever tells you adoption is easy, I would seriously question whether or not they did it legally and ethically.
The day our son was born we had only been chosen by his biological mother one week prior. We had a flight scheduled for the next week, closer to her due date. This made for a very frantic morning—and that sounds like an understatement. They emailed us a list of all of the required documents in order to complete the ICPC process (Interstate Compact on the Placement of Children) and be allowed to take our son out of the state of Nevada. This list was long and crazy overwhelming and we were missing necessary items.
Let’s just put it this way: Even the non-anxiety-prone people might have been having mild panic attacks.
The problem was that I had already started having mild panic-attacks during the previous week. I felt sick when I thought about the finances. $40k is a lot of money—money we didn’t and don’t have—we now have $8,500 in debt and close to $11,000 more to pay with post-placement visits, finalization costs, and our last payment to the agency. We tried to negotiate with the agency for a lower fee based on some very logical factors, but did not find favor. We had prayed for that miracle, but when God chose that otherwise was best, we started praying for the kind of miracles that make you think money actually does grow on trees (probably olive trees). And God has definitely been providing, but I will speak more on that in a future blog.
I was having panic attacks that caused my legs to shake, my pulse to race, and my throat to get tight. It forced me to walk out of places, like my office staff meeting, so I could close my eyes and try not to suffocate or vomit. I was literally throwing myself at Jesus’ feet for mercy, but like most of my life this anxiety was my thorn-in-the-flesh as described by the apostle Paul in 2 Corinthians.
I thought it was bad before I went to Nevada so I entered a whole new ballgame upon my arrival.
We arrived on Wednesday night, and by Friday morning I was wearing thin. I was living in a mind-boggling paradox. I had complete joy and certainty at the addition of this precious boy—I was elated! I also had a crippling physical manifestation of anxiety that I could not make sense of. I really couldn't understand why I felt anxious. Everything in my heart and head were at peace, but my body was revolting. It was mutiny in the most intimate form.
I knew the Lord was providing the finances, and he was reminding me of that over and over again. When we first landed in Vegas we had a voice mail letting us know that a $3,500 donation had been made to us at 35kcampaign. Thank you, Lord! Click their name if you're interested in supporting us!
I had thought I wouldn’t share these intimate pieces of our journey. As I told those closest to me, “I don’t need people to actually know that I am crazy”.
The thing about the intimate pieces of our stories is that they expose us; the ugly and weak parts of us. It is in these tender and fragile spaces of who we are, the broken places, that God is most glorified.
He said to me, “My grace is sufficient for you, for my power is made perfect in weakness.” Therefore I will boast all the more gladly about my weaknesses, so that Christ’s power may rest on me. 2 Corinthians 12:9
When I say physically crippling anxiety, I mean the kind of anxiety that had me leaning against hospital walls as inconspicuously as I could while searching for the chapel. Then laying prostrate on the ground while I tried to calm my entire central nervous system. The kind of anxiety that had me crawling out of the shower unable to stand, and instead curling up in the fetal position trying to breathe while my sister surrendered prayers of healing through the phone.
It was Saturday. Our little man was about 3 ½ days old and it was time to meet his birth parents and sign papers, but I was naked on the bathroom floor unable to stand.
Is this the strong, impressive woman everyone thinks she is? Because it is, in fact, the same woman.
Human. Broken. Weak.
It's important to share this part, because it reveals that what is so 'great' about me, is not me, but Jesus' life in me.
We have this treasure in jars of clay to show that this all-surpassing power is from God and not from us. We are hard pressed on every side, but not crushed; perplexed, but not in despair; persecuted, but not abandoned; struck down, but not destroyed. We always carry around in our body the death of Jesus, so that the life of Jesus may also be revealed in our body. For we who are alive are always being given over to death for Jesus’ sake, so that his life may also be revealed in our mortal body. 2 Corinthians 4:7-11
While we were in Las Vegas we frequently heard Hawk Nelson’s song, Diamonds. I would lean my head back in the car, close my eyes, and let the tears flow while I tried to take deep, slow, healing breaths. I would then do a check-list of truths in my mind.
I trust God.
God is sovereign.
God is faithful.
This is God's will.
God doesn't lead us using fear--this anxiety is not from Him.
God is in control.
God loves me.
God loves this little boy.
God loves my family.
You see, I believe God could have healed me in those moments. And I know, that this anxiety was not a result of my lack of faith--even though many Christians might try to tell me otherwise. My best understanding of the Truth, is that in God's sovereignty He was allowing me to endure this physical hardship. Because I trust that He is sovereign and good and loves me, then I could trust that He would see me through and use this for my good and His glory. My war was "not against flesh and blood", but I could rest assured who would be the victor.
The song became my anthem and it still fills my heart with strength and hope.
He's making diamonds, diamonds
Making diamonds out of dust
He is refining in his timing
He's making diamonds out of us
Oh, the joy of the Lord it will be my strength
When the pressure is on he's making diamonds
He's making diamonds, diamonds
Making us rise up from the dust
He is refining in his timing
He's making diamonds out of us
I'm no expert, but if Geology.com is accurate, there are some significant parallels to the diamonds formed in our lives. A diamond is formed deep down under the earth's surface and it takes extreme acts, like asteroids hitting the earth, to produce the heat and pressure necessary for a diamond to take shape. Then, it takes a "deep source volcanic eruption", that tears out pieces of the earth and carries the diamonds "rapidly to the surface".
Not only does high pressure (90 miles of earth) and temperature (2000 F) sound unpleasant, it doesn't sound like a peaceful extraction, either.
Our lives are no different.
Sometimes in order for God to refine us it takes events and circumstances so penetrating that they strike us at the core of who we are. The pressure can feel so heavy we wonder how on earth there will be anything left of us to refine. These diamonds are formed deep down in our hearts and then, often painfully, pulled to the surface through the 'tearing out' of pieces of us--the pieces that need torn out-- in order for the diamonds to rise to the surface.
As Hawk Nelson sings,
I'll surrender to the power of being crushed by love
Till the beauty that was hidden isn't covered up
Our character is shaped--it's refined--through the moments that break and rebuild us. It changes who we are and how we respond to the world. It prepares us for what is to come. When the pressure is on we can have hope--hope that God doesn't waste anything & he will produce diamonds in our hearts, in our lives, in us, that we couldn't even dream of.
Tomorrow morning our son will be 7 weeks old and I have been to more than 17 appointments with three more on the agenda for this week alone. I have looked some seriously scary 'possibilities' in the eye. I don't know what the future holds. I have very few answers.
But I'm not curled up naked on the bathroom floor unable to stand. My feet are firmly planted, my heart is sure, and in my weakness His strength is made perfect. I went through some kind of crazy spiritual boot-camp a couple months ago, but I know it refined me so that I might be better equipped for these days.
When anxiety was great within me, your consolation brought me joy. Psalm 94:19
The Joy of the Lord is your strength. Nehemiah 8:10b
Wednesday, June 8, 2016
“No one lives out an exciting calling without just plunging forward at some point, full of fear and uncertainty.” –Shauna Niequist
I hold a sweet baby boy in my arms and I look back at the many days leading up to this moment. I know that the whole journey began so much like that: full of fear and uncertainty.
It first manifested on elementary school playgrounds when I longed to be friends with any peer who had a unique set of needs. They didn’t need me, but I felt drawn to them. Don’t misunderstand me; I wasn’t just curious about them or saw them as some kind of ‘show’. I longed to be near them and for them to call me their friend.
This longing on the playground grew until I would find myself in grocery stores or movie theaters fighting back tears when an adult special needs group would show up. I wouldn’t fully understand it until later and I always hid it, but something would swell-up inside of me and overtake me. Some strange feeling that I still can’t fully describe—as if my heart might burst if I didn’t give-in to it.
For a long time, I wrote myself off as just a little sappy—which, let’s be honest, I am. But The Holy Spirit, as it often does, began cleaning the windows of my soul. And slowly, over time, I could see more clearly into my heart. I’m sure it wasn’t an aha-moment, but somehow it became apparent to me over time. What I was feeling was a maternal longing.
I sensed that God was revealing to me a piece of his plan for me. Could I be getting some incredulous sneak-peek into my future? But somehow I just knew that I would mother a child with special needs. I tucked this expectation away in a quiet, secret room in my heart, and barely even acknowledged it to myself during the pregnancies of both of my daughters. It felt shameful to admit that I was almost surprised when neither were born with any significant medical needs or conditions. I wasn’t disappointed—not at all—just a little surprised.
After the birth of our second daughter, the Holy Spirit got back to washing the windows of that little secret room in my heart. It took several months but finally I gave in to that gentle tapping on the glass and peered in. Even when I could see, I still had so many questions, but it’s funny how clear things really are once they are actually clear. So clear, in fact, that I wondered how I hadn’t seen it before. As if the writing on the wall had been so evident all along. In my mind I had always anticipated birthing a child with special needs, but it was now so apparent that God was whispering into my life a plan for growing my family through special needs adoption.
I found the courage to share this with my husband and together we found the courage to take that first step of starting our home study. We began the home study journey in April of 2015 and spent the next 11 months wrestling within ourselves, laying bare our souls before one another, and leaning into Jesus begging him to ‘make clear the path’. My husband was brave, so incredibly brave, as he leaned into a longing that had not been his own and asked The Father to make it his. We took turns releasing one another from expectations or decisions, we stepped forward and took steps back, we cried and fought and misunderstood one another, and we held hands, because whatever path we took, wherever God led us, we were going to do it together.
Opportunities came—in the forms of emails—adoption price tags, situations and medical conditions that made us swallow hard and wonder if we had misheard God, because surely we weren’t proving ourselves faithful if we didn’t say YES to every single one. We grew disheartened when we didn’t have peace situation after situation. Was it us? Was it our hearing? Were we just unwilling?
I cried a lot.
I was scared.
I was unsure.
We had plunged forward into this crazy, heart-wrenching adoption journey filled with so many unknowns and we didn’t have any answers. It wasn’t feeling like an exciting calling; it was feeling a lot more like folly.
Then, on Wednesday night, April 13th, I was walking into youth group when I saw a facebook message pop up on my phone. It was from my high school math teacher—which at the time was a little random.
It had a screen shot from a post in a private cleft support group about a baby due in the next few weeks who had cleft lip/palate and potentially some other special needs.
I spent the next week communicating with the woman behind the post (long story!). Everything felt so “right”, but there was one thing that felt exceptionally terrifying—this adoption would cost around $40,000.
So we prayed. A lot. And we chose to trust the supernatural peace that we believe can come only from Jesus and believe that if God called us then He would certainly provide.
And we plunged forward—full of fear and uncertainty.
Wednesday, April 20th, a very special woman chose to trust us as the forever family for her son.
Wednesday morning, April 27th at 8:30am, my phone rang and the man on the other end told me a baby boy had been born just a couple hours earlier and we should come as soon as possible. So we kissed our girls goodbye and got on an airplane as fast as we could. That night, when he was just 15 hours old, we walked into that NICU and laid eyes on this sweet baby boy with a full head of dark hair.
It’s an odd moment to walk in to a NICU at almost 10pm, as strangers, no one from an agency there, no social worker, and sort of just say “We're here to adopt a baby.”
Oh I can still see his sweet little face and big wide eyes, open and ready like maybe he knew we were coming.
The lip and palate were obvious. She showed us his feet—about 7 toes, sort of. His right hand is typical, five separate digits. His left hand has all five fingers, but three are fused together.
We knew right then of course, that there would likely be many things hiding under the skin that would prove to be problematic. We aren’t naive. We knew, but it didn’t matter. He was ours.
He is our own and he is worth everything.
I can’t explain away all the brokenness or the tragic reality that our precious son doesn’t get to grow up with his first family or that woman is grieving his absence in her life, but somehow in God’s sovereignty He knew and saw all that would be and He had a plan for this boy’s life. In his mercy He has allowed us to be a part of that plan. Thank God.
No, really, thank God.
I hold a sweet baby boy in my arms and I look back at the many days leading up to this moment. I take a really deep breath and shake my head a little—I’m relieved. I’m relieved because we didn't miss out because of fear. I'm relieved because God’s grace was sufficient for us and his power was strong enough for us, and He gave us the courage to plunge forward—again and again and again—I will never thank God enough for this, because I don’t just know the cost if we had not stepped out in faith, I’m holding it in my arms.
Photographs by Rosie McCoy Photography and Caitlin Creek Photography & Charms.