Tuesday, March 26, 2013

Comfort in The Wilderness

WE love because HE first loved us.
 1 John 4:19

 This is part two of three of a special guest post by my beautiful friend Nancy Tate. Part One is here: Backspace ~ Moving Toward Brokenness

Nancy and Bryon

"Even though my illness was a trial to you,
you did not treat me with contempt or scorn.
Instead, you welcome me as if I were an angel of God,
as if I were Christ Jesus Himself."
Galatians 4:14

I could tell by the photo that Bryon was more broken than I had realized. His legs were all twisted and his head was thrown back and to the right. His mouth was wide open. Immediately, I felt a warmth flow through me and tears of love and compassion poured out of my eyes. I could almost hear an audible voice whisper to me in that instant. All of My children are broken. Some damage is visible to others, but most is not. I adopt every seeking, broken child and bring them into My family.

It was love. It was even deeper than I had realized. I was being taken to a new level spiritually, and could feel a bigger heart growing inside of me. I could not wait to get my hands on this little boy and smother him with love. My heart ached, knowing only pieces of the pain he had endured so early in life. I couldn't wait to show him how deeply loved he was by Jesus.

The timing was amazing. Kelley had to fly to Indiana on business, and that was where Bryon was staying at the time. I went with him on the trip so we could meet him. It worked out that our meeting date was his birthday too! Kind of amazing to be placed in the arms of your forever mommy and daddy on that very date! A year later, but better late than never.

I remember being surprised by how arched and stiff his back was, and being struck by his lack of eye contact. I remember how difficult it was to have him drink from a bottle as we sat at a table in Don Pedro's Mexican Restaurant with Heather and Michelle from Giving Hope Rescue Mission in Haiti. His legs were twisted strangely. He was nothing like the three healthy, bouncing biological children to whom I had been blessed to give birth. But he was precious. Precious not only to Kelley and me, but to Jesus. I knew this deep within my being. Taking on this life, with so many significant medical problems would challenge us deeply, but above all, it would honor the One who had sacrificed so immeasurably for us - Jesus.

We had to return to Philly, but were making plans to return to Indiana in few weeks to bring him home with us. We had been approved to become his “Host Family” for the duration of his medical visa. We concurrently began the adoption process. We decided we should drive to retrieve him because we were not sure how he would handle travel and that would give us some flexibility. We stayed in a hotel halfway back to PA that first night. I remember it was so difficult to feed him. We barely slept, as Kel and I found ourselves the parents of a baby again after our youngest had just turned twelve.

As soon as we arrived home, I took him to Children's Hospital of Philadelphia, to the International Adoption Center there (per the advice of a fellow adoptive mama, Heather Beals). That day was eye opening for me, to say the least. I heard the words “Cerebral Palsy, brain injury, dislocated hips, poorly-healed femoral fracture (how does an infant sustain a broken leg????), visually impaired, cleft palate, physical therapy, occupational therapy, wheelchair, non-verbal, DISABLED.”

Now, let me say this. I have several friends who have disabled children. Some severely disabled. Others mildly. It became clear to me on this day, that life as we knew it was over. We had stepped into a world that many parents would never choose. (I meet these parents all the time at CHOP. They think I am crazy.) Yet, God had asked us to come here, to this place. Realizing this would be more difficult than we had known, I felt a wave of peace come over me. I remember exactly where I was sitting as it washed over my spirit that day. God's peace reassured me that HE values the disabled. He loves them and uses them as a “stretching machine” for those of able body and mind. He uses the disabled to teach US compassion and love. And boy, do I need to improve in those two areas.

In January of 2011, we had two hospital stays. The first lasted only a week. The second lasted into February – 33 days to be exact. The first week stay began with an ER visit with a non-responsive baby, after his blood sugar had dropped to 50 and he would not wake up. Terrifying. This brought the NG (nasogastric) feeding tube. He was unable to consume enough calories orally to sustain him, let alone fight malnutrition and help him gain weight.

We were able to go home for a week, but had to return for a sleep study. He cried all night long every night, because his airway was so obstructed and he would wake up constantly. January 13th was the sleep study. He failed it. He had almost 200 interruptions to his breathing due to his collapsed airway, during the first HALF of the test. The test was stopped early, and he was admitted to the hospital. This began the first of many long hospital stays as we worked with doctors to solve this little puzzle wrapped in the cutest little shell. His breathing was worsening while we were there waiting for surgery. It was a weekend, and for some reason Bryon's case wasn't seen as emergent. He ended up “coding” two days later. This means an alarm was sounded and a team of about 20 rushed to his bedside to do whatever their specific role was to prepare him to be put on a ventilator and moved to ICU. I'd say that was emergent. He was intubated and sedated for three days waiting for surgery.
I was terrified. Numb. Alone. I had never seen anything like this before. I had been taken to a wilderness that I was not equipped to be wandering. 

"I will bring her into the wilderness and speak comfortingly unto her." 
Hosea 2:14

I remember sitting on the awful, rock-hard, vinyl couch bed near the window. It was the middle of the night. I was praying and crying softly. I was overwhelmed. I was afraid. I felt completely incapable of the task Jesus had given me. I must have managed to drift off to sleep, because I saw him. I saw Bryon as a teenager. We were all in heaven. He was so handsome, and he was RUNNING all over the place, laughing and TALKING. He came running up to Kelley and me, winded and beaming, and said, ”Oh THERE you are, mom and dad! I just wanted to say 'thank you'.” He hugged us both and then he ran off. I have never had such a vivid dream. It was a gift from God that night for my soul.

I remember waking suddenly and looking over at the fragile boy in the hospital crib who was not even breathing on his own. I remember asking myself, Who does something this crazy? How have we fallen so in love with a boy that isn't even ours?? But I had a renewed strength in seeing the eternal value of what we were doing. It changed me right then and there. 

My mission became clear. The fragility of Bryon's body and the events of the next year, would serve as a daily reminder to our family that we are also fragile and broken, in other ways. We all need a Savior. This Savior is as crazy about us as we are about this baby. He went to the cross to prove it, and we were willing to go to the ends of the earth for Bryon.

This hospital stay is where we tackled phase one of Bryon's airway issues. There were countless other hospital stays and surgeries to tackle feeding (which now is done solely via tube) and orthopedic surgeries and castings.
When I hold this boy and smother him with kisses it is because I love him. But it is also because I know Jesus. I know this God who loves us the same way. He wants to smother you with kisses and fix your broken spots. He wants to perform surgery on your deep, broken places and make you new.

Unfortunately Bryon will likely always struggle, barring a miracle. But he is happy. He is well-loved. He has had nine surgeries this past year which have corrected many things, but his brain had been injured in Haiti. His muscles and eyes may never work like they were intended to. This makes me sad.

But I know this. We will do everything humanly possible for this sweet boy. We will work hard to help him lead a happy and productive life. He will likely always need to live with us. That is OK. I welcome the heart surgery I have received.

Many people have said things to me when they hear Bryon's story. Many people have cried and told me I am an angel. I am not. Not even close. I place obedience to God above all else. That is the only answer I can really muster. It is that simple. I was given a choice. I also know that many mamas do not get to choose a child with disabilities. They are given them. I have also met a few mamas that ONLY choose to adopt these children. THIS is the heart of God. This is moving toward brokenness.

In Scripture we see Jesus move toward the disabled all the time. He healed the paralyzed, the blind, the deaf, the leper. His compassion was never-ending. The people who brought the disabled to Him were consumed with love and wanting the best for their friend or family member. I know this love.
We can not understand why some children are dealt such a difficult hand in life. We may be tempted to feel sorry for them. We may be tempted to feel sorry for ourselves sometimes. We may be angry with God. 

But you see, God has used Bryon to give me a glimpse of His heart. Special needs require special love. Caring for someone with special needs or physical disabilities requires a suspension of self. One must ask God for help in functioning outside of selfishness. I have learned that in giving of myself and placing someone else's needs ahead of my wants, there is true joy. 

Joy is not fleeting like happiness. Joy is deep and abiding. It stays with you. It is a sense of knowing you are where you have been asked to go. Knowing that someone who can not help himself is totally dependent on me for care and love helps me understand the depth of the care and love Jesus gives. “WE love because HE first loved us.” 1 John 4:19

Who can I step out of my comfort zone to love? God, teach me obedience through sacrifice. Challenge me to move toward the brokenness and value the seemingly invaluable. They are all around us. The disabled. The homeless. The elderly. The loner. The most effective way to show Your Son to this hurt and dying world is through Your perfect LOVE. May Your love change all our hearts.

Please continue to lift our family up in prayer. There are more surgeries to come this year. Hospital stays are challenging for us. Pray for Bryon to become strong and healthy! Pray for miracles with his vision! (We are already seeing changes there.) Pray that he will hold his head up completely! Pray that he will say, “mama” soon!!! Pray that he will sit up! Pray that he will walk!!

We believe God can do miracles. May His Name be glorified in our lives and in the life of precious Bryon.

For Part III click here. 

Is this not the fast that I have chosen:
To loose the bonds of wickedness,

To undo the heavy burdens,

To let the oppressed go free,

And that you break every yoke?

Is it not to share your bread with the hungry,

And that you bring to your house
the poor who are cast out;

When you see the naked, that you cover him,

And not hide yourself from your own flesh?

Then your light shall break forth like the morning,
Your healing shall spring forth speedily,
And your righteousness shall go before you;
The glory of the Lord shall be your rear guard.
Then you shall call, and the Lord will answer;
You shall cry, and He will say, ‘Here I am.'"

Isaiah 58:6-9

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