Melody, full trisomy 18, turned seven years old in February! She is healthy, charming, and making remarkable progress lately.
When Melody was younger we did patterning with her to help her brain make the connections as if she were crawling. Crawling is extraordinary for the brain. Nonetheless, a few years ago I gave up hope that Melody would crawl. For multiple reasons I was given renewed hope recently and thus started patterning her again. We are now doing it several times a day. It is a commitment, as it takes three of us to pattern her, but the results have been amazing.
Melody’s army style crawling has improved greatly. She army crawls a much greater distance, more efficiently, and with better form than she ever did before. Patterning has contributed to this accomplishment, and so has her pink Porsche. She received this car for her 5th birthday, but we had it out in the garage for quite awhile. Recently when we brought it in, she was delighted. We told her any time she crawls to her car and reaches out to touch it she gets a ride. We had no idea what we were signing ourselves up for when we offered this to her.
Melody army crawls to her car multiple times a day. She understands she gets two laps through the house for every time she touches the car. One evening when Melody crawled to her car after she had earned about eight car rides that day, her sister understandably tried to see if just one lap would be enough. When she parked the car Melody grabbed the steering wheel tight with both hands, leaned forward (as if to communicate “go”) and gave the saddest little girl face she could muster. Her sister gave in, “How can I say no to that?” Off they went.
All this movement Melody has been doing – crawling and walking with her parallel bars – has been remarkable for her on several fronts. Movement leads to better respiration; better respiration leads to more efficient and improved skills with eating; and better eating leads to a happy team over here who has to spend significantly less time feeding her. Just a few months ago it was taking us about five and half hours a day to feed her. Now we are down to about two hours or less.
The increased movement has also helped her to make more connections in her brain. For awhile now Melody has been inclined to laugh at tangible things like toy cups stacked on her head or someone tickling her. The other night I was feeding her on my lap while she was facing away from me. The lights were down so there was nothing visually to elicit laughter. I thanked Melody’s sister for giving Melody so many car rides that day. Melody started laughing. I asked her if she thought that was funny, and she started laughing again. Clearly she was laughing at a mere concept. Basically the concept is she is the princess who has quite a bit of power in this home. And power she wields. 😉
Some of Melody’s favorite things in life are her Porsche and music. The other day she crawled to her Porsche during her music therapy. Since she legitimately earned a ride, we put her in there. Her music therapist just rolled with it, and she stood up with her guitar and continued to sing to Melody as she drove around the house. She has such a good life. 🙂
Sometimes Melody likes to stop and wave to her fans when she is driving.
On Trisomy 18 Awareness Day (3/18), I encourage you to pause and consider the ways in which the “incompatible with life” label dehumanizes these sweet children. They are precious and worthy of life. They are indeed vulnerable, but they are some of the most lovable children you could imagine. They require extra care, but they also have needs just like all children – to be loved, cuddled, read to, and to have playtime… or in Melody’s case to drive around in a pink Porsche.
For You formed my inward parts;
You covered me in my mother’s womb.
I will praise You, for I am fearfully and wonderfully made;
Marvelous are Your works,
And that my soul knows very well.
My frame was not hidden from You,
When I was made in secret,
And skillfully wrought in the lowest parts of the earth.
Your eyes saw my substance, being yet unformed.
And in Your book they all were written,
The days fashioned for me,
When as yet there were none of them.