Wednesday, April 20, 2011

Touching Millions

“Your son will encourage millions.” These words were spoken by a complete stranger as Shawn pushed Benjamin around in his stroller at the back of the huge conference hall at the Kansas City Convention Center. We were attending the 2010 One Thing Conference hosted by the International House of Prayer (IHOP) in Kansas City, MO. At least 22,000 people, mostly youth and young adults had gathered for four days of seeking after the heart of Jesus. Millions more were tuning in by TV or internet connections from around the world. Shawn thanked the man and after telling me of this encounter, I journaled the words of encouragement. A few hours later I received a text message from the (IHOP) testimony team, asking if we would be willing to share our son’s testimony on the stage that night, which happened to be the last night of the conference. His testimony…I’d better do some backtracking…
In January 2010 I began to notice some strange behavior in Benjamin. At random times, though usually after waking up, his eyes would get a distant look, and his shoulders would hunch up, and his arms would spread out to the sides a bit. He would repeat this motion multiple times within a few minute timeframe.  Whatever he had been engaged in would be momentarily interrupted. I noticed it first while nursing him. He would lose his latch for a few moments and then resume again. After about a week of noticing this behavior on and off, I called it to Shawn’s attention. Alarmed, he asked me to get an appointment with the pediatrician the next week. Neither of us wanted to say “seizures,” but a haunting fear was beginning to grow in us. Benjamin had just had surgery the month prior to fix double hernias in his groin area. We were not ready for another medical hurdle; we were still recovering from his open heart surgery the previous July. However, Dr. Harris wasted no time in referring us to a pediatric neurologist to take a closer look at things. He wasted no time, but as is often the case with specialists, the office was booked for six weeks and gave us no hope of getting in any sooner. As we anxiously waited for his appointment, Benjamin’s condition grew worse. The episodes became more and more frequent, averaging two to four “clusters” a day, where as before we only noticed one or two every few days or so. Developmentally he began to take steps backwards. His smile and laugh, which had only just been emerging, disappeared altogether. He would no longer make eye contact with Mommy or Daddy. He was not interested in playing with toys or playing in general. He spent a lot of time just laying around and staring into space.
The day of his appointment finally arrived, but instead of seeing a specialist, we saw a technician who performed an EEG. Benjamin was wrapped up like a burrito, then had numerous leads and wires attached to his head (a long process). Once everything was in place, the lights were turned off, except for occasional flashing lights over Benjamin, and his brain activity was charted on the computer for 20 minutes. My heart sank when I realized the technician could not give me any information about what the computer was reading; we would have to wait for the neurologist to read the results and call them in. Two long weeks later our pediatrician called asking me to bring Benjamin in right away. My mom was visiting at the time and was with me as Dr. Harris shared the news. He had just received the EEG results that morning. The test showed chaotic brain activity, indicating a form of seizures known as infantile spasms, a condition more common in children with Down syndrome. Without missing a beat he personally called the neurologist’s office, insisting that Benjamin be seen within a few days. We had an appointment scheduled for two days later. After receiving the news in the doctor’s office, I felt numb. Thank God for my mom who had the presence of mind to ask more questions and write some things down so we could start our own research. We went straight to The Salvation Army so I could personally tell Shawn what we’d discovered. Upon hearing the news, he broke down crying. My tears wouldn’t come until later; I was still numb and in a state of denial.  
The next few days brought more discouragement as we found more information about infantile spasms. There was no fool-proof treatment for the condition. It carried the potential of long-term brain damage and increased developmental delay. There was a chance of the development of other types of seizures down the road.  Our appointment with the neurologist didn’t brighten things either. He explained to us that there were different types of medications to try, but all of them had potential (and some severe) side effects, and none of them were guaranteed to solve the problem. At best they could stop the seizure activity, though there would still be the potential of future onset; at worst they wouldn’t do anything for the seizures and Benjamin could experience side effects. His first recommendation for treatment was called ACTH (abbreviated), and would require 6 weeks of shots—3 weeks of daily shots and 3 weeks of every other day. He told us the pediatrician’s office could teach us to administer them.  Give my baby shots?!  I’d never imagined having to do such a thing, but do it we must.
The first week of treatment saw us daily at the doctor’s office. I was the first to try administering the shot, and I could think of a million other things I’d rather be doing. To have to intentionally inflict pain on my child felt like more than I could bear. Shawn was in an even worse state. The day he had to give the shot he almost passed out. He was so shaken he asked me to pray for him before he left. I found out later, to my slight irritation, that he even stopped to get himself ice cream on the way back to work to make himself feel better, while I went to another part of the hospital to get Benjamin’s daily blood pressure reading!  As it was, I ended up administering all the rest of the treatments. That week uncovered more concerns as well. Benjamin’s glucose levels were tested before the first shot was administered, and were slightly high. This pattern continued throughout the first week. Now in addition for giving him shots, we had to prick his toe on a regular basis to test his blood sugar levels. During this same week,  Benjamin failed a hearing test which started the ball rolling for a long series of events that culminated with him being fitted for hearing aids several months later. He was required extra lab work that week as well, and he is very much a “hard stick.” He wailed inconsolably while being poked and prodded like a pin cushion before they could finally draw blood.  Emotionally I was hanging by a thread. I tried to hold on to the words of encouragement the Lord had spoken to me while I was waiting on Him a few days before we received the confirmation of the seizures:
I have chosen Benjamin for Myself, and I will release My glory through him. His condition is not a tragedy but an opportunity for Me to show Myself strong. Do not grow weary and do not lose heart for I have chosen your family for such a time as this. I will yet wipe every tear from your eyes and restore joy where there has been sorrow. I AM God, and I will do this, so look to Me. Always look to Me.
During the first week of shots, Benjamin was understandably more fussy than usual. There were afternoons that he would just scream and scream, behavior that had been pretty uncharacteristic for him before. Drawing up the shots was nerve-racking. The solution was thick and had to be refrigerated. I had to warm up the vile in my hands until it was fluid enough to be drawn out. All air bubbles had to be tapped out of the syringe before the shot could be administered, which often took a long time. Benjamin’s legs were soon covered with little, red spots where the multiple shots had been given.  
At the beginning of the second week, we finally got the internet hooked up in our home. As a stay-home mom, I needed a link to the outside world. I immediately went to the International House of Prayer website. They have had 24/7 worship and prayer unbroken since 1999, and the prayer room could be web-streamed live for free. Benjamin loves music, especially worship music, and I needed something to help me refocus and connect with God. IHOP was also in the middle of revival, and they were holding Awakening services several evenings a week. Testimonies were pouring in from around the world of people receiving salvation as well as physical and emotional healing. During the first day that I had the prayer room playing in the background, I noticed the Benjamin was much calmer than he had been. He didn’t have a single screaming fit that day. The next day he was laying on his baby gym mat in the living room, and I was doing something in the kitchen. Suddenly, I heard him let out a delighted squeal. I ran into the living room and saw what my heart had been aching to see for weeks. Benjamin smiled big, let out another happy squeal and drifted into a peaceful sleep. The next few days brought more improvements. He began reaching for toys and was even setting off musical toys he’d never been able to work before. He was smiling, babbling, and reaching for our faces. He did not have a single seizure that week. He has not had a single seizure since. By the end of the week I could hardly contain my excitement, and I e-mailed IHOP our testimony. The next evening after returning from a friend’s house, another friend called and asked “Are you watching the Awakening tonight? They just read your letter!” We logged onto the archives the next day and watched as Wes Hall, who was leading the service, read excerpts of our testimony that had “so touched (his) heart.” In his crisp, British accent he said he believed Benjamin’s testimony was a “down payment” of what God wants to do in our son and in the Down syndrome community. We were thrilled!
The next week, Benjamin’s therapist came for his weekly appointment. She was so shocked and thrilled by the drastic improvements in him that she stayed an extra hour. He was so engaged in what she was doing with him. At one point she exclaimed, “It’s amazing what a difference a week can make!” I responded, “It’s amazing what a difference Jesus can make!” She agreed.
As God’s timing would have it, our prayer group had already been long planning a trip up to IHOP that weekend. While we were there, we had to opportunity to share Benjamin’s testimony on stage, and many people prayed over him, including a young man who had been previously healed of seizures himself. While we were there I also received some deep, emotional healing. One night some family friends offered to keep an eye on Benjamin during the service, so Shawn and I could be free to go up to the front to worship and pray without distraction. A lady came up and asked if she could pray with me. She sensed that God wanted to heal some deep disappointments in my heart. I let her pray, but I was feeling pretty good emotionally at that point. However, as the Holy Spirit began to minister to my heart, He unplugged a well deep inside me, and I found myself sobbing in this woman’s arms. All I could say was, “Why my son? Why my son?” As I allowed the grief to pour out, I felt lighter and freer to worship. Before the evening was over, God had touched my heart in a powerful way as wave after wave of His peace swept over me. It was a definite turning point in my journey of healing.
We dutifully finished out the course of the shots, but the amazing thing was that during and after our time at IHOP, Benjamin didn’t cry during a single injection. The follow-up EEG showed that his brain waves were completely free of seizure activity! While I know that medicine is often a gift from God, I don’t attribute Benjamin’s amazing recovery to the medicine but to the power of the Holy Spirit. Nothing else could explain the sudden change and turn around in his condition and behaviors. At a 6 month EEG check-up Benjamin continued to show no sign of seizure activity. He has truly been healed!
Now, back to the One Thing Conference. On our second day there, we “by chance” ran into Wes Hall and reminded him of Benjamin and his story. Wes was excited to see us and prayed over Benjamin again. On our last day, I filled out a testimony sheet for something the Lord had done for me during the conference and mentioned Benjamin’s previous healing. Those things taken together prompted the testimony team to request that we share our son’s story again, along with some others who would be testifying about their recent healings. As we waited backstage to go on that night, I realized that millions would be watching. I suddenly remembered the word spoken to us by a stranger only that afternoon. “Your son will encourage millions.” My heart was overwhelmed realizing God was already fulfilling that word to one degree! After sharing, they prayed over Benjamin again, and we returned to our seats. As the evening came to a close, we were amazed by how many people approached us, some with tears in their eyes to thank us for sharing our son’s story. Several asked if they could pray for him right then and there. We felt absolutely blanketed in God’s love! My heart was warmed as well to consider the many stories we may never hear this side of eternity, of lives that were touched that night by the testimony of God’s faithfulness in Benjamin.

Thursday, April 7, 2011


Today I've been experiencing another small wave of grief over Benjamin's multiple delays. A little while ago some phrases from a poem I wrote back in 2002 suddenly flooded my mind. The poem is called "Broken," and I wrote it during an especially difficult time in my college years. I was amazed at how words that were written so many years back, in a different set of circumstances, before I had even met my husband, could speak so directly to the season of life I find myself in now. There are places in God's heart that can only be discovered in the midst of surrendered pain. It is a privilege to love my son in the midst of pain, and it is an even greater privilege to love my God on the days when it feels my heart could break...

My defeated, grieving heart
Eyes stained red with tears
Yet on Your altar of grace
I have chosen to lay down my fears
My dreams I had clutched so tightly
The heart is so deceiving
Thinking I knew the way to walk
I kept myself believing
That the truth I had perceived
Must be the only way
When the true desire of Your heart
Is for me to humbly pray
What I had seen as beauty
You knew could soon be shaken
In love You'll never rest
Until I am completely taken
Into the deepness of Your heart
Where my identity is lost
In the fullness of Your Grace
And the promise of the Cross
My broken pieces belong to You
Do with them what You will
And as You overtake me
In Your peace may I be still
This life is Yours, not mine
You are the Lord of all
Direct my path with every step
And catch me when I fall
Burn away myself
Until all is stripped away
May I live in brokeness
Each and every day
For there true beauty resides
Your richness fills my soul
As I step into Your Presence
I know I have been made whole
Oh, my precious Jesus
Your face is all I seek
I rejoice that You are strong
Every place that I am weak
I long to stand before You
I desire favor in Your eyes
Guard me from the enemy
Free from all of his lies
One day I will be with You
I'll gaze into Your face
I ache to feel the fullness
Of Your tender, intimate embrace
But until that day arrives
You are my daily food
Please take my broken pieces
And feed a multitude
So that I may stand before You
Knowing I did not live in vain
For You are a Sovereign God
And I surrender to You my pain
That You may form beauty from ashes
And build within me a fire
That spreads out to those around me
As I burn with Your desire

Friday, April 1, 2011

Memories and Miracles

I wrote this last fall...
I’m trying to catch 15 extra minutes of shut eye after our morning nursing session. Benjamin is sitting happily in his baby seat in the office with Daddy. As I lie in bed, sleep eludes me while memories sweep through my mind at a rapid rate. For no rhyme or reason I am escorted back to May 2009. I remember the unexpected and frightening C-section, hearing the first piercing cries of my newborn son, and the shock and fear when he was rushed to the NICU instead of being brought to me. I remember my first glimpse of my baby four hours later, hooked up to a ventilator and monitors, his skin an unnatural ashy color. The doctor had already told us she suspected Down syndrome and kept saying, “He’s a very sick little boy.” I remember when I finally got to hold my son nine days later, though he was still a tangle of tubes and wires. I remember the day of his longed-for homecoming when he was a month old, and the nurse’s parting comment “He truly is a miracle. Most of us didn’t expect him to still be here.” I remember the short-lived month at home before Benjamin was back in the hospital for open heart surgery and a two week recovery in the PICU…
…My memories are interrupted by the obnoxious beeping of my alarm clock, and I tell myself that it really is time to get up and start the day. I walk into the office and kneel down beside my beautiful 16-month old miracle to give him kisses. His face lights up in a huge grin. “Hello, Miracle Man!” is say as I pick him up and hold him close. Benjamin lets out a delighted squeal. We head to the living room for him to play with his favorite toys—a Leap Frog Learn & Groove Musical Table and a highlighter yellow stuffed gorilla. As I sip my coffee and watch my son eagerly playing, I am struck with the beautiful thought that every day with Benjamin is truly a miracle!