It’s amazing how one day my world is spinning in a forward motion accomplishing the normal day to day life moments, and in the blink of an eye…I go from spinning – to spiraling…grasping to take a breath, just one breath, that will bring me to a place of stability again. I remember this feeling so clearly as I sat in my car with my three-year-old son David, weeping and processing all that I had just heard and all we had just gone through. I felt alone. I was fearful. I was left with unanswered questions. I was just told my son was never going to be “normal.”
When David was three years old I put him in preschool because I went back to work part time to help pay for my oldest son to go to private school. After a few months at this preschool, I was called in to the office and the preschool director informed me that they would like to have David tested, saying he was “not conforming to the regular way of teaching.” I really didn’t understand what she meant or even what she was looking for or trying to figure out. So, I agreed. After the preschool tested him, they said I should have the school district test him. After they tested him, they referred me to Inland Regional Center. Although I had never heard of IRC, I could see that David was having difficulty with their testing and knew there were probably some areas he may need help in, but still didn’t think it was a big deal. I knew my David was a little different once he was a year old. Well, at least different from my first son. David slept for long periods of time. He smiled ALL the time. He only said a few words at three years old, and didn’t necessarily say them right. His eyes seemed to be a little lazy. He would bang his head on the bed (so hard that the bed would hit the wall repeatedly) and hum to fall asleep. He would get frustrated very easily. He skipped crawling and took longer to walk. These are just some noticeable differences looking back that I saw, but at the time they didn’t seem MAJOR. I know that every kid is different and I didn’t want any of my kids to live a life of comparison with their siblings. That was just our David.
I remember that day of testing at IRC. It was long and tiring. After he was tested, I grabbed David’s hand and we were taken into a separate room with two men. I sat down and was not prepared to hear all they had to say. I remember seeing their lips move but not hearing words. The only thing I remember from this whirlwind of talking were fragmented statements:
“Your son has mild mental retardation.”
“He will always have this and it will never go away.”
“We don’t know why he has it or how he got it.”
“We don’t have anything definitive to give you on how far he will progress mentally.”
“Do you understand what we are saying?”
This is all I remember. My heart sank. My mind was a fog. I don’t even know if I said anything or responded with more than a nod. I just remember they were very matter of fact and unsympathetic in their questions and approach in telling me. It struck my body and spirit like a ton of bricks. I walked out, feeling confused by what just happened. He is still the same David, but now my world was flipped upside down, and now he was labeled. Marked.
Never do you think your child will be any less than what you dreamt and thought of for their life when you first laid eyes on them. How do you grasp something you did not ask for nor are prepared to handle…that you cannot control or change? Yet I was expected to get in my car and go on with my day as usual. I buckled David in his car seat (he had a big smile, as always) and called my husband John. I told him the only words I could remember from my conversation with the two men at IRC…he took it all in…and was quite expressive in his silence. He said gently, “okay” and we hung up. If I had known I was going to receive such a blow, I would’ve had him come with me. But I had no idea what the outcome would be. I never heard the terms autism, or retardation, or special needs. I was just a 23-year-old mom with three kids trying to do the best I could with what I knew…and this…I knew nothing about this. I sat in the car for a few moments and cried while all these thoughts raced through my mind: What does this mean for him? For me? What is mental retardation? Will he be bullied or made fun of? What will his quality of life be? Will he be able to read, write, or ever live on his own? So many unknowns racing through my mind. No one to ask and no one to give me answers.
I left that day forever changed. I remember thinking I didn’t want David’s life to be difficult, nor did I want to live in fear of what he would be able to do or not do, to experience or not experience. I looked for books, resources, Christian resources, anything! Not much was found, and that was even more difficult to process. I just wanted him to live a normal life. But I quickly learned that he WOULD have a normal life. It would be HIS new normal. It would be our new normal. And we would learn this new normal together.
Over the last 16 years there have been tears, failures, frustration, anger, fear, and loneliness. Yet on the other side of the pendulum there have been victories, growth, forgiveness, understanding and a deep love for a community of kids and parents I would have otherwise never known. I learned to pray more than ever. I learned to be patient more than ever. I learned to love the unlovable and unnoticeable more than ever. My new normal is filled with unknowns, and that is okay, because it is also filled with newness and hope.
I know that David is wonderfully and fearfully made by the work of the Father’s hands (Psalm 139:14 ESV). When I found out that David was diagnosed with MMR I right away carried the guilt that it was something I had done, somewhere I had failed or messed up. It was a heavy burden to carry. One day I read John 9:1-3, where the disciples and Jesus were walking along and saw a blind man who was blind since birth. The disciples asked Jesus, “who sinned, this man or his parents, that he was born blind” …insinuating that this disability must have happened because of sin or even that being blind is a horrible consequence of sin. Jesus responded, “Neither this man nor his parents sinned, but this happened so that the works of God might be displayed in him.” This one verse freed me from the bondage of guilt, to know that David has been given this gift as a work of God that He might be displayed in David.
Over the years, I see this: David loves EVERYONE. He has a love that sees no faults, failures or imperfections. He worships in a way that inspires me to worship God more. He has a heart of empathy that hurts when others hurt and rejoices when others rejoice. I see God in Him and through Him. Although David will probably never be the greatest intellect, athlete, scholar, or businessman, he will always be a child of God. The label and banner over his life is LOVE…The love Christ has over him, the love he has for Christ, and the love he has for others. Yes, I still worry and wonder about his future as he is turning 20 this year.
I continually pray for David: I pray he finds at least one TRUE friend. I pray he forever serves the Lord. I pray that he will one day understand what it means to love a woman and get married. I pray he can have children and care for them. I pray that if it’s the Lord’s will, David would be healed. But more importantly, I pray that the Lord will ALWAYS guide, correct, and protect him.
I love our new normal, and I wouldn’t have it any other way.
By: Kristine Flores