Tuesday, March 30, 2010
"He was despised and rejected by men, a man of sorrows, and familiar with suffering. Like one from whom men hide their faces he was despised, and we esteemed him not." (Isaiah 53:3, NIV)
I was recently given the honor of participating in a "virtual book tour" for a newly released book entitled Autism & Alleluias by Kathleen Deyer Bolduc. Participants were mailed the volume, asked to read it, then give a review on their blog between the dates of April 1-7, 2010. I was very much looking forward to getting the book given the prevalence of autism in our world and my desire to see more quality literature written on faith and special needs.
However, when I received the book, with all its scripture quotes, raw emotion and prayers, I found myself in a place I didn't expect. I found myself in a place of constant contemplation of how our suffering as parents of children with special needs puts us in a unique place of connection with our faithful God. I connected with so many of the emotions in the book and knew that I serve a Savior who can identify with those emotions.
When our precious Charlie was born and immediately diagnosed with severe hemophilia, I found myself in a place of deep grieving and anguish. Watching that little newborn have to endure several infusions before he had even completed his first week of life ripped my heart out. My sorrow was so profound - just knowing that this was our new life now - that I had to share it with others because it was too huge to contain in my human heart. Yet, people couldn't hear it. The thought of this little baby suffering was more than they could stand. We were cut off in mid-sentence. The subject was quickly changed after the obligatory, "How are you doing" was asked.
I can remember being at a Memorial Day Parade with this baby who was barely a month old and having a man repeatedly commenting on the large hematoma or bruise on Charlie's little bicep. The shame and condemnation thinly veiled in this man's words pierced me through. It only added to the dismay I had felt myself when I went to change this infant's clothes and found this injury that had occurred for no apparent reason.
This wouldn't be the first time I received false accusation from ignorant people. When we moved into our new house in 2001, we had a new refrigerator delivered. Since it was warm out, Charlie was padding around in nothing more than a diaper. The delivery man took one look at the angry bruise on Charlie's chest, looked at me, then shook his head in disgust. My heart is still wounded as I recall it.
Through the years, I have experienced all the heartache of seeing my son suffer unspeakable things. I've experienced rejection by friends because our lives are too messy, too stressful. I've endured refusal by teens to babysit for my son because they have false notions of what it might be like or what he is like. I've seen his sorrow as he's excluded from using a trampoline or playing football because they would put his health at too great a risk. I've heard my son cry out in utter anguish, "Mom, make them stop! You're supposed to help me!"
Bolduc points to emotions and experiences like this in her book too, and therein lays the common thread. We parents share the very heartache that God the Father experienced in watching His Son despised, misunderstood, looked at in disgust, persecuted, suffering and crying out for rescue. And our children share the pressure and testing of God the Son by going through much the same. Romans 8:17 tells us "We will also share in the glory of Christ, because we have suffered with him." (CEV) Hebrews 4:15 says of Jesus, "This High Priest of ours understands our weaknesses, for he faced all of the same testings we do, yet he did not sin." (NLT) Psalm 34:18 assures, "The Lord is close to the brokenhearted and saves those who are crushed in spirit." (NIV) Again and again, we see how close we are to our God in the midst of our special needs journey. As we contemplate our suffering Savior, we can see how He turns our painful difficulties into something glorious because they further identify us with Him!
One story in Autism & Alleluias struck a particular cord with me. It was the story "We Need Jesus!" In it, Bolduc shares the experience of dissolving into tears of frustration while trying to manage caring for her son. Who of us hasn't experienced that? But she's tenderly met by the Savior through her son who sits down next to her, patting her shoulder proclaiming, "We need Jesus. We need Jesus."
As one Person of the Trinity, God wrapped in flesh, who so strongly identifies with all we and our children endure, Jesus holds out the tender hope of empathy towards us. Why wouldn't we hold up the broken pieces of our lives to Him and proclaim what Joel Bolduc did? Whether parent or child, in our times of being "despised... rejected... familiar with suffering" when we confess "We need Jesus," we are united to the Ruler of the Universe, Lover of our souls in a precious and unique way. Our journey is His journey.
*For a further review of Autism & Alleluias, see the article "Stories from the Summit" in our April, 2010 issue of SNAP SHOTS. Autism & Alleluias can be purchased at Amazon.com.
Thursday, March 25, 2010
- Helping one another
And these are just a few!
Being a leader in disability ministry, I regret to say that I still find "the church" to be difficult to work with when it comes to special needs families. Congregations can be too much like a club rather than a tender home for those who are weary and struggling. Both leaders and attendees can lose sight of Christ when they demand flawless, predictable services that exclude the disabled. Christians shame themselves when they refuse to do the dirty work of loving those that society considers unlovable or oppressed.
With the same token, I've seen plenty of families of kids with special needs clutch their bitterness like a tattered, rancid blankie. They self-righteously scoff at people who reject them claiming an unearned moral superiority. How easily families like us can forget that people need to be taught what it's like to live with a disability in the household. Before we became parents of kids with special needs, we too possessed an ignorant fear. Regardless, ALL are called to show mercy, love, forgiveness and patience to others.
My point is that we all need to go beyond merely listening to the word, claiming belief. Even Satan does that! We need to put it into practice DAILY. What that looks like changes minute by minute, especially when living with medical crises or unpredictable children. Starting each day with a prayer to look more like Jesus and less like ourselves will invite the Spirit in to do His perfect work on our hearts and thus, our behavior. No doubt, in our ugly humanity, we'll still slip up, but with far less frequency. And when we do falter, our humility and repentance will heal the wounds we inflict. That's a project big enough to keep each of us busy all they way to Eternity!