It hurts a little, maybe more than a little, when I see new parents saddened by the news their new bundle of joy has a disability. When new parents find this news before their baby is born and they send out the ‘bad news’ — it breaks me a little. Maybe I would have done the same had I known of our journey before our guy was born. The wisdom from time and experience in our special needs driven life has given that 20/20 hindsight. This Christmas, I’m seeing more clearly now my gifts from disability.
Man, do I remember walking out of the hospital after delivering my guy … without him. Walking out of the NICU and leaving him behind can feel like yesterday; it’s a pain I never expected. The last thing I was thinking about was the gifts to come. I relied on my own strength, or what little was left in me, and I wish someone had told me this:
"When troubles seem near, God is nearer, and He's ready to help. So why run and hide? No fear, no pacing, no biting fingernails. When the earth spins out of control, we are sure and fearless." (Psalm 46:1-2)
Years later, I wish I could write one of those letters to my younger self. If not to myself, to those new parents just now experiencing that new diagnosis of special needs. Yeah, your own dreams just got rearranged. But, God dreams so much bigger. Right now I’m listening to that very man/boy play with his brother in a way that back then I would have never dreamed possible. The gift of laughter is in our house. The gift of joy is here after a season of hard days. These little giggles are more than a mom could ask for right now.
"But let all who take refuge in you rejoice; let them shout for joy forever. May you shelter them, and may those who love your name boast about you. For you, Lord, bless the righteous one; you surround him with favor like a shield." ( Psalms 5:11-12)
I’ve been told I’m a bit of a worrier. Relax? I’m sorry, I don’t understand? Sure, I can give it to God … and then take it back again. What about you, new parents, are you worrying right now? For years (and years) one of the things I worried about was where my boy would live when he reached the age when he would need to move from our home. I researched and visited and laid awake at night stewing over the options. One day, it suddenly seemed he was already home, right where he needed to be. Now, I can’t imagine him living anywhere but here. Why did I waste so much of my days, so many nights, worrying about a plan he had all along? I finally have the gift of peace knowing God has a plan for us. All I have to do is rest in it. (Remind me I wrote this when I start worrying about something, deal?)
"... even at night when my thoughts trouble me. I always let the Lord guide me. Because he is at my right hand, I will not be shaken ... in your presence in abundant joy; at your right hand are eternal pleasures" (Psalms 16:7-8;11)
Evan loves prizes for any and all of his achievements. We may have created a monster. Like eating a cookie. Since being sick this past year he doesn’t eat much at all. Eating a cookie is a huge achievement. I, on the other hand, do not need much convincing to eat cookies. But Evan, he gets gifts. And just for eating that cookie he wanted a prize. Evan is excited for the smallest of gifts. Just a small token of his achievement is all he wanted. Evan has the gift of contentment. We are blessed with his happiness in the little things.
"Those who walk in the fields to sow, casting their seeds in tears, will one day tread those same long rows, amazed by what's appeared. Those who weep as they walk and plant with sighs will return singing with joy, when they bring home the harvest." (Psalms 126)
Evan loves all things Christmas; the music, the decorations, the lights, and duh, the gifts! He brings an extra excitement to the holiday and reminds us that Christmas brings us a hope, a joy. His contagious joy is a gift. Christ’s presence is new again at Christmas. It’s tangible. Evan reminds us (all day) of the gift of Jesus. This Christmas I am re-remembering: “For behold, I bring you good news of great JOY which shall be to all people!”
I’m not gonna tell you there won’t be hard days within disability. But, what the younger me didn’t know was there would be so many gifts hidden among those days. The difficult days would bring a gift of drawing me closer to God, and this simple life would be so much sweeter than anything I could have dreamed. So, new parents, send out those announcements of joy, not disappointment and fear. You just received a gift.