Monday, June 29
Ethan, our youngest, appeared not to be developing according to the standard medical definition of “typical”. As a matter of fact, my wife noticed that he was regressing. Months went by as we waited on waiting lists for doctors all over northern NJ. By the time we actually saw a neuro-developmental pediatrician, we already had a diagnosis for Ethan. Severe PDD-NOS (Pervasive Developmental Disorder – Not Otherwise Specified). She changed that to Autism and we began navigating through the Special Needs bureaucracy. I just wanted the diagnosis so I could get him the services he needed and I figured that if we had enough services, we could turn this around.
After the diagnosis, Ethan went through phases. One of them was the “I’m not going to bed now” (or ever) phase. It felt like it was hours before he would finally fall asleep. What went on during that time was that I would sit in his room with him, then hold him and rock him gently back and forth as he fought to get up, cried, kicked his legs and flung his arms around while trying to connect a “reverse Zidane head butt”.
During those seemingly endless nights, I would keep repeating (for both of our sakes) “It’s Daddy” and “I love you”. Ethan is non-verbal and I remember during those nights how much I wanted to hear those words from him. One night after he had finally given in and fallen asleep, I remember crying as I watched him. I thought about how much I wanted him to speak to me and how much I dreaded that it was never going to happen. Out of nowhere, I heard: “[Why] does it matter?”, “What if he never says anything?”. And then, these reckoning moment questions: “Will you love him any less if he never speaks?” and “Do you love him for who he is (now) or for what he might do/become?”
That moment rocked me. I knew the answer to those last two questions! I had a lot of questions about the future, his, mine, and ours but I knew the answer to those two! I knew I was incapable of loving him less. Nothing he could do could change how much I love him.
Psalm 139:13,14 (ERV) says it like this, “You formed the way I think and feel. You put me together in my mother’s womb. I praise you because you made me in such a wonderful way. I know how amazing that was!”
And John 15: 13 (TPT) says, “For the greatest love of all is a love that sacrifices all. And this great love is demonstrated when a person sacrifices his life for his friends.”
And that is how God loves us. He loved me before I was born. He knew the mistakes and poor decisions I would make along the way and yet, He loved me enough to give everything up to prove his love for me by dying on the cross. And He entrusted a little one to me too.
Alex Soares, Guest Writer
Alex is a dad to 3 teenagers and the husband of Suzi Soares (Family & Special Needs Pastor). He grew up as a pastor’s kid in Brazil and came to the US to study violin performance in college. After becoming a dad, he changed his definition of success to “having those who know you best respect you the most” since it’s easy to impress people from a distance. He also holds the distinguished honor of having volunteered in every Liquid Family volunteer role (*wink, wink*).
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