Read Steve Demme’s personal story of finding hope and redemption and join him for the Special Needs, Struggling Learner Conference in Orlando.
I am looking forward to getting together with others who are experiencing life with a special needs child at the second annual Specials Needs, Struggling Learner Conference in Orlando, November 21-22. I believe this conference will be unique because not only do we have challenges raising these special children, we are seeking to do this while home educating as a family. I always find hope and encouragement being with others who understand this challenging lifestyle.
For the Demme’s, home education was more of a lifestyle than an academic alternative. We tried to do as much as possible as a family, whether learning, working, performing chores, playing in the woods, driving to the post office, or attending church. We were already stretched with three boys 7, 5, and 2 1/2 years old when our son John appeared.
After consulting with a pediatrician, our midwife informed us that she suspected John had Downs Syndrome. At the time we knew very little about the implications of that statement, but on the wall of the birthing room was a plaque that had Romans 6:23:
The gift of God is eternal life.
My wife’s first thought was, I can train this child to live forever.
Our physical struggles began when he was a few months old and contracted an RSV virus which put him in an oxygen tent for several days. While in the hospital the doctors discovered a heart problem. Three months later he had his first of two catheterizations, and at eight months, open heart surgery. This was followed by intestinal surgery at ten months and reflux issues which continue to this day.
Our life became harder. We have since learned that the additional strain of parenting a child with special needs significantly affects marriages. The stress also took a toll on our health. When John was born I was a pastor living in a parsonage. Sandi was homeschooling the two oldest boys, caring for a special needs child, managing a toddler, and trying to support and encourage a needy worn out husband. She came down with candida, chronic fatigue, & Epstein Barr, which took a tremendous toll on her.
I had never gone through a situation of this magnitude and had some sort of emotional breakdown. Usually a people person, I had difficulty meeting people or answering the phone. Within a few months of John’s last surgery, I resigned from all of my obligations in ministry and the workplace, and we moved to a different state to regroup as a family and make a living.
Our hopes were that the change would be good for all of us, but the next year proved to be even harder. When we let down our guard, we fell further than we expected and began to realize life would never be “normal” again.
I now know that difficult situations, suffering, and valley experiences are a normal part of the Christian life. But at the time I just kept hoping that the next surgery, or the next herbal treatment, or the next prayer meeting, would make the difference and we would be back on an even keel.
Even though I had read the Bible cover to cover over 10 times by this time, I missed the significant portions of God’s word that talked about suffering.
• Matthew 5:3 “Blessed are the poor in spirit, for theirs is the kingdom of heaven.”
• Matthew 5:5 “Blessed are they that mourn.”
• Psalm 34:18 “The LORD is near to the brokenhearted and saves the crushed in spirit.”
Valleys come with a grief component. I did not know anything about grieving. As a man, I was accustomed to fixing things and finding solutions. But I couldn’t change a chromosome count. This was too big for me. I shut down emotionally and became numb, which took a toll on my wife and children.
Even though I was still following sound biblical disciplines of reading scripture, attending church twice a week, and praying, I did not recover. The turning point came when I sought God in desperation. In hindsight I think I was afraid if I really opened my heart to God, I would fall apart, like Humpty Dumpty.
In my daily bible reading I came across Psalm 55:22:
Cast your burden upon the LORD, and he will sustain you: he will never suffer the righteous to be moved.
This was, and is, a promise that if I cast my burden upon God, He promised He would sovereignly sustain me, and I would not fall apart.
Kneeling by my bed I began to weep in relief and God met me and my healing began. The hymn, What a Friend We Have in Jesus, has new meaning now.
1. What a friend we have in Jesus, all our sins and griefs to bear!
What a privilege to carry everything to God in prayer!
O what peace we often forfeit, O what needless pain we bear,
all because we do not carry everything to God in prayer.
I hope to see many of you in Orlando next month where I will be sharing the rest of our journey, the ups and downs, the hopes and the fears, and how God has used John to change our life and make us more like Jesus.
God bless you each in your journey.