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| Joel at Disney's Castaway Cay |
Joel entered our lives on a cold (for South Mississippi) December day 5 years ago. By the time we made it home from the hospital, the weather had completely changed...and so had we. We had been told that there was a possibility that Joel would be born with Down Syndrome. After several inconclusive screenings, plus multiple reassurances that the fetus was otherwise developing in a healthy manner, we stopped testing and started waiting. On the day that he entered the outside world, we had all but forgotten that the possibility existed As a matter of fact, the OB/GYN had forgotten and failed to notify the OB floor staff...they were quite surprised! I remember the day of Joel's first sunrise. I prayed, wondering how we would ever adjust to this new reality. Everyone assured me "everything will be fine." I didn't understand how they could say that. Then sweet Joel snuggled into my arms, and my warmed heart understood, "everything is going to be fine." A warm front came through our area and the temperature was twenty degrees warmer. Nothing in my suitcase was appropriate for me or the baby. I would need to adjust...that was 5 years ago.
I've learned so much from Joel in these 5 short years. It would take more than a blog to share it all. Maybe one day I'll write the book. But for now, a lesson for each year...
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| Joel completed his first soccer season this year |
1. Take Your Time Another mom I know with a most handsome son toting extra chromosomes refers to "Noah-time". She is referencing how patient one must be because her son will arrive/finish/move/go/sit/stand/speak/leave at his pace. Joel is the same way. Some days, we don't move fast enough for Joel. But most days, there is a methodical pace that I must choose to take if I am to walk hand in hand with him. Because holding his hand is absolutely one of the most precious gifts in my life, I choose his pace. Oh sure, there are days he gets swung onto my hip, or onto Dad's back, or onto brother's shoulders, or into a stroller to move a little faster. And he enjoys the ride (see smile and celebrate below). I have learned to love this new pace, however. I had learned a different pace, one conducive to mothering 3 small children, being a part of a clergy couple where both of us worked full time in a large church, and still volunteering throughout the community. My stride was long, my heels clicked the floor with purpose, my arms pumped the air as blood pumped through my veins with ever-increasing urgency. I was going places! It wasn't until Joel took my hand and slowed my step that I realized I was missing the journey. Joel took his first steps at 20 months, nearly 10 months after his typical peers. Although he has had physical therapy most of his life and wears braces on both ankles, his gait is still a bit awkward and slow for his age. Me too. I've been practicing this new pace for only 5 years. There are still days that I rush right past the most important people to get to some incredibly important meeting *or so I thought*. Joel's gait will get stronger, more stable. I only hope I can grow as fast as he.
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| Joel hunts for a Christmas tree |
2. Listen to People As a pastor, I do
a LOT of listening. Word to the wise: having the opportunity to do a lot of listening doesn't necessarily mean you are a good listener. For several years I worked as a children's pastor in a large church. I remarked after my first quarter that every kid there had letters: ADD, ADHD, ODD, AS, ASD...I had a perfunctory conversation with each mother: "How can I help your child's experience within our ministry be a positive one?" I was proud of myself for asking. I felt like I implemented as many of the suggestions as were practical. Then we got letters: DS, TS21, SPED, PT, OT, SLT...I remember the first mom I went back to and said, "Tell me your story again." I wasn't listening for a certain set of pre-determined answers that fit my to-do list. I was listening for her voice, the voice she gave her child, the wisdom she had gained from learning his pace, the hope I could muster from warriors like her. Joel's speech therapist started coming to see us around his first birthday. His typical peers had already mastered 50 words or better. His older brother was speaking eloquently by 12 months. Joel had no words. The therapist reminded me of the importance of speaking to Joel, reading to Joel, exposing Joel to lots of language because he was listening. And slowly he would begin to process sounds, then words, then ideas, then language. But I had to listen to him too. Repeat his sounds. Mimic his expressions. Engage in "conversation" with him
because he needed the encouragment to keep trying. How many people around me have "lost their voice" because the world stopped listening and no one has encouraged them to keep trying? I never get tired of hearing Joel's sweet voice. Okay, exaggeration...sometimes he makes these horrible sounds: yelling, crying, screaming. I get tired of that. Those sounds stop when I listen, attend, help him solve his problem. Then, the sweet voice comes back: "mymama" is my name. "Iuhnyootoo" is I love you. I am learning to listen.
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| Joel enjoys a little yogurt |
3. Smile My 4 children have been blessed with beautiful smiles. My oldest son has the smile of an angel. He is absolutely beautiful. My second son has the smile of mischief. His smile assures you that you wish you knew what he was thinking! My daughter has the loveliest of smiles that melts our hearts. Joel's smile is pure joy. You have to smile back. I have friends whose children also sport the extra chromosome who tell of their child's uncanny ability to recognize the hurt souls in our midst. I heard one mother tell the story of her son entering a restaurant with them. Upon entering, they quickly recognized a fellow church member who was known for her critical words and overbearing spirit. They quietly requested to be seated in another part of the restaurant, not wanting to hear the scathing comments she would surely make about their son's poor table manners. Their son saw her too, recognized her immediately, and went and sat in the empty seat at her table. You see, she was alone. She was a widow, and no doubt her bitterness came from a broken heart. My friend's little boy sat with this woman for his entire lunch. Joel seems to have a similar affinity for those who need a smile. He has an easy way of placing his hand on your shoulder and rubbing your back. He seems to know who in the room needs him. Joel's smile brings joy into a room, but he won't leave until everyone in the room is smiling with him.
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| Super Joel |
4. Forgive Easily Like all toddlers, Joel has had to be taught to say "I'm sorry" when he hurts someone. He can pack a mean punch! Because his words don't come as quickly as his friends' words, he often resorts to pushing, pulling, and hitting to get his way. (But really, who doesn't??) When we witness this behavior, we intercept the action, telling Joel he can't hit and now he must say sorry. "Isorree" the words come out slurred together. His head is usually tilted downward, eyes peaking out from under long eyelashes to see if you accept. And a hug. Joel can't apologize without hugging you. This is so endearing about him, even his sister can't resist him. But what is most precious is when he is hurt by someone else, and that person offers an "I'm sorry" Joel goes through the same procedure...almost apologizing along with the offending child, hug and all.
It's as if Joel feels forgiveness no matter which way it is being extended. The only person I've ever seen Joel hold a grudge against is a nurse. She was quick to forgive him...knowing how many times she had stuck the poor baby! I think Joel's smile comes so easily because his list of offenses stays so short. I would do well to do likewise.
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| Joel gives Donald a kiss |
5. Celebrate Joel
loves mascots: Chickfila Cow, Sweet Pepper Pepper, Santa Claus, Easter Bunny...loves them. But his heart belongs to Mickey Mouse. That's why we were all so excited to take Joel to Disney World where he would meet Mickey Mouse and Friends. Joel's favorite show is Mickey Mouse Clubhouse. At the end of every show, the friends do the "hotdog dance" to celebrate their accomplishments. Joel has perfected this dance...and uses it appropriately. Chicken nuggets for dinner: woo hoo! hot dog dance. Extra ice cream: woo hoo! hot dog dance. Papa is coming over: woo hoo! hot dog dance. It doesn't matter if you're in the kitchen, at church, on the cereal aisle at Rouses, any place is a good place for the hot dog dance. Joel celebrates easily. Of course, I love finding reasons for him to celebrate. But really, he finds them more easily than I do.
He reminds me that life gives us hundreds of reasons every day to celebrate if we're looking for them. And oh, to really celebrate. Not just a mental acknowledgment that something is swell...but a foot tapping, arm waving, voice lifting celebration. Joel teaches me to regularly celebrate what is good. He teaches me that good can be found in a lot of insignificant things.
When we brought little Joel home just a few weeks before Christmas, I knew we had some major adjustments to make in life. I just mistakenly believed they were about my lifestyle. I've learned the major adjustments happened in my heart. Thank you Joel, for the gift of you. I love you, and I love being loved by you.
