Scenes flashed across my memory: There was the time when I was at a highway rest stop and saw an elderly mother leading her handicapped adult son out of a stall. I thought, “I could never cope with that.”
At night, when the children and my husband were asleep, I was left alone with my ponderings. I didn’t want to know this pain.
God must have made some mistake. We don’t have the resources, the patience, the skills or the abilities. We aren’t great parents. We are just simple, common folk. We aren’t equipped to make these decisions. If we truly love this child, would it be better to hand him over to someone who IS capable? If so, why did God place him with us? I looked back over my pregnancy and tried to figure out a cause, as though having an event to blame would help.
Was it something I took? Did I eat too much protein? Or the wrong kind of protein? Did I not eat enough vegetables? Was it because I ate contaminated foods? Was it something to which my husband or I was exposed?
During my pregnancy we had refused screening because, “We aren’t going to send him back,” we flippantly responded. “We will take whatever God gives us.” But now, I truly wondered if it hadn’t been a way of protecting us from the temptation of abortion. In my swirl of emotions, I wondered how far our fear and doubts would have taken us. I trusted we wouldn’t have done it, but now I wasn’t so sure.
As I sobbed, I wrapped my arms around myself to steady my shaking. My stomach was twisted in knots. The tears flowed, but they weren’t healing tears. This was a sorrow without answers. I heard my keening as though I were listening to someone else sorrowing. I struggled to put my thoughts together in light of my faith.
Was there something we should have said, done or prayed? Was this because of our past sin? Or our current sin? Or sin we weren’t aware of? Is this God’s wrath displayed in our child’s suffering? “And his disciples asked him, saying, Master, who did sin, this man, or his parents, that he was born blind?” (John 9:2). The words that had once been an interesting Bible story now haunted me.
Was God trying to tell us something? Or was it a random occurrence? Could I dare to think that Jesus’ answer to his disciples would apply to my son? “Jesus answered, Neither hath this man sinned, nor his parents: but that the works of God should be made manifest in him” (John 9:3).
I thought of my family: What about our other children? This isn’t fair to them! They have bright futures before them and now our limited resources will be strained further. We aren’t young. We were planning to retire one day and enjoy our twilight years together with grandchildren around our feet. Those dreams will be changed.
What about our marriage? I thought about the flawed areas of our marriage. We had rough spots. Would this be too much? Would our love be broken in a way that was beyond our ability to mend? Would we lose each other? I didn’t WANT to lose my husband! I NEEDED him! I ached for him.
He was dealing with his own swirl of emotions. In his way, he did for me what he needed. He gave me space while he went to work and put in a new floor. He dealt with his pain privately and in his own way. It felt like I had been abandoned. I knew I wasn’t, but it felt terribly lonely. Thankfully, I was too occupied to lash out at him. It would have only made matters worse.
The books I had collected since childhood, planning to share them with my children, now sat on the shelves in their neat little rows and seemed to laugh at me. I wanted to joy in the academic accomplishments and the smartness of my children. Now, I would see other children breeze past milestones that my child would likely struggle to master. I didn’t know if he would ever be able to read.
So many people said, “these children” are blessings. If this was a blessing, why was I dying inside? I saw a news report about a boy who was the biggest fan of a sports team. He was called an inspiration, instead of a kid who liked football. I didn’t want to mother an inspiration, I wanted a son.
What happens if he dies? What happens if he doesn’t die? What happens to him if we die? In my heart I wondered if he would die from physical complications. In a way, it was the only thing that made sense. My son would die; we would grieve, and we would somehow move on. Our friends would comfort us. I would sorrow over the loss, and we would honor his memory by becoming better people. Surely that’s what God had in mind. Now I was negotiating which sorrow I could better manage.
And if he lived? How would we teach him? What if he can’t learn? What if he can’t understand about God? Will he understand enough to have faith for salvation? The sobs shook me again. My mama’s heart said to hold that baby. Bond with him. MAKE him respond. I had done that, but NOW . . .
I was afraid to look at him because I didn’t want to see any features that hinted at his condition. I only wanted to see my son, but in looking at him, I knew the day would come when strangers would only see a diagnosis when they saw him. I knew this because I had been one of those people. Now other mothers would do that when they saw MY child.
We had only been his parents a few months. People had spent lifetimes studying his condition. We were faced with mountains of documents while I was still recovering from giving birth, coping with a new baby, dealing with hospitals, doctors, surgery, etc. There was so much to learn. How was I ever going to decide what to believe when the experts didn’t even agree?
While I was still trying to cope with the diagnosis and struggling to manage his care, I began to wonder if I would ever get to be just his mom. I wondered if his little arms would ever encircle my neck and if he would ever utter a joyful declaration of his love for me.
EARLY INTERVENTION PROGRAMS
Many voices told us to get him into an early intervention program as soon as possible. He wasn’t even six months old yet! The dictionary defines intervention as an action that comes between two parties by force or threat of force to maintain or alter a condition. While I believed that these workers had the best of intentions, I held my little one closer and refused their “helps.”
Instinctively, I knew that anyone or anything that tried to move this child outside of the authority of his parents would also remove the protection he desperately needed. I would learn later that in my area, the therapists who coordinate services for children with special needs are also backlogged with children who suffer because of a lack of stimulation. This means that they can begin to treat all of their cases as though they are working with children of parents that are “ignorant” or “unwilling” to help their children. Later, we would utilize various services, but always at our direction and discretion.
THE TASK OF BECOMING INFORMED
I tentatively glanced over medical literature and cringed. The words were delivered with clinical heartlessness: “mongoloid,” “mental retardation,” “thick tongue,” “low I.Q.,” “poor health,” “poor social skills,” “congenital defect” . . . I would later learn that much of the information was terribly outdated. The sick feeling returned to my stomach. If this is what they EXPECT from my child, why would I want them to treat him?
Someone must have been praying for me in that moment. In my soul, the tiniest seed of faith stood up and said, “I don’t know what to believe, but I know WHO to believe. I want to know what He has to say.” So I pulled out my Bible and read in Psalm 127:3, “Lo, children are an heritage of the LORD: and the fruit of the womb is his reward.” Whose reward? His? That is referring to God! I looked again at the words in the medical reports. They were in stark contrast to the WORD.
The experts all said my child was a disappointment, a defect. The Psalmist said that God had fashioned this child as His own reward, a divine trophy.
“And the man of God answered, The LORD is able to give thee much more than this.” II Chronicles 25:9
I recalled how God used the stone that the builders had rejected. Psalm 118:21-23 stated, “I will praise thee: for thou hast heard me, and art become my salvation. The stone which the builders refused is become the head stone of the corner. This is the LORD’s doing; it is marvellous in our eyes” (cf. Matthew 21:42; Mark 12:10; Luke 20:17).
I remembered the Syrophenician woman who was glad to be called a dog if it meant she got crumbs from Jesus’ table (cf. Matthew 15:27, 28). The word began to wash over me, “But God hath chosen the foolish things of the world to confound the wise; and God hath chosen the weak things of the world to confound the things which are mighty” (I Corinthians 1:27).
Strains of a childhood hymn came to me:
Jesus loves me! This I know,
for the Bible tells me so.
Little ones to him belong;
they are weak, but he is strong.
I determined to measure my and my child’s success or failure by God’s measure, and none other. The difficulties and challenges were still there. The circumstance didn’t change.
But now, we knew something that all of the experts (and many in our fellowship) did not know: This was no cosmic accident caused by sticky chromosomes or rotten eggs. This was a trust, a commission, placed within our hands – just like all of our other children. God would teach us what to do, tell us when to do it and provide the means to accomplish the task as we sought to serve Him. In the midst of our past and the future uncertainties, we clung to “I
As we prayed and sought God, He directed us to the resources that offered our son hope and fit our family. We changed our diet and got creative in how to find the highest quality foods at the lowest prices. I began to read about natural health and herbal remedies. Instead of running in fear from our child’s diagnosis, we were now pursuing the hope. Predators tried to take advantage of us and said things like, “Purchase our product so your son will develop normally. See our pictures? Read testimonies from other parents!” We refused hope in a bottle and chose to hope in Him.
A secular organization of neurodevelopmentalists trained us to think of brain development in a whole new way. We knew they were an answer to prayer when they said, “You are the expert on your child. We are the experts on brain development. We will teach you what we know, evaluate your child and show you how to apply our techniques at home.” God provided the funds for us to use their services for two years. When the funds ran out, we were armed with information and able to move forward.
A book on the politics of nutrition educated me about food. A book by a mother of an autistic son showed me how to track down the cause of odd behaviors and symptoms in a systematic way, investigating the effects of certain foods on our child.
It would be deceptive of me to make it sound like it was an easy ride. It hasn’t been. There have been stretches when we weren’t sure if we were making the right decision. God has patiently taught us how to follow Him by various means.
Sometimes a series of tiny adjustments have led us to places we would have never set as our goal. More than once I’ve had to purpose to follow after my husband in obedience to God’s word when others quietly wondered if he wasn’t being foolish. I’m proud to say that if he is a fool, he is God’s fool. God has proved more than equal to the task of teaching my husband all He needs him to know to lead us.
Have we been overwhelmed? Oh yes! This is far too big a task for us. Thankfully, “I know whom I have believed, and am persuaded that he is able to keep that which I have committed unto him against that day” (II Timothy 1:12).
God is big enough to handle your hurts, your anger, your doubts and your fears. Jesus is the only One who truly understands, and He knows just what you and your family need. “But when Jesus heard that, he said unto them, They that be whole need not a physician, but they that are sick. But go ye and learn what that meaneth, I will have mercy, and not sacrifice” (Matthew 9:12,13).
When you think about it, ALL of God’s children have required extraordinary measures. “Come unto me, all ye that labour and are heavy laden, and I will give you rest. Take my yoke upon you, and learn of me; for I am meek and lowly in heart: and ye shall find rest unto your souls. For my yoke is easy, and my burden is light” (Matthew 11:28-30).