No Better Way to Spend Trisomy 18 Awareness Day Than Taking a Spin in a Pink Porsche

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.   

Psalm 139:14-16

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.

Comments 17

  1. Precious, precious, precious! Thank you for sharing and encouraging me heart. I am grateful to have you all in my life!

    Yay, Melody!!! Mrs. “B” loves you!

  2. Melody’s progress is beyond amazing.
    Thank you for including me!!
    God blessed you with this beautiful child and your family has taken her special care to new levels. I proud to know your family!
    Many blessings in the year of 2020!!

  3. Wow Melody look at you go! Great job on your army crawling! I wish if I did good at my army crawling I could drive a Porsche around! . You and your family are such an inspiration to me sweet little Melody . Hugs and Love,
    Mrs. Sully

  4. Yay for another post! And what wonderful progress! I sense we have kindred spirits – and I am inspired by Melody and your family.

  5. Thank you so much for sharing this inspiring update especially at this distressing time in our lives. Melody is just incredible as are you and your family. Be well and safe.
    Dr Dan

  6. Sweet Melody….you look FABULOUS in your pink car. Pretty soon you will need a real pink car. I hope I can get a ride with you when that happens. Your smile just makes me smile too. Thanks for sharing.

  7. Dear sweet, Melody, and her amazing “team”,

    Happy Trisomy Awareness Day!

    We are so pleased to see the progress you have made in these last few months. WOW!! Your story and pictures are the perfect encouragement we all need to see to counteract “the world’s news”. Thank you for the reminder that God is in control of everything and we need to stay focused on Him.

    We LOVE you all!!
    Oma and Opa

  8. Bless you all for sharing Melody and her joyful happenings! Melody always brings a smile to my face, she and all of you are endlessly inspiring.Thanks again for bringing smiles, laughter and joy to my world!!

  9. God is so good! Melody you are such an inspiration to everyone. May God continue to bless you and your wonderful family.

  10. Reading your posts about Melody’s progress and hearing how God is demonstrating just how ‘fearfully and wonderfully made’ we are, even when the world may say otherwise. The pictures are great and to see Melody sitting with the ‘chicks’ at her feet … wonderful!!!! <3

  11. Hi Melody, Good thing gas is cheap right now! Sounds like you are driving a lot these days! Keep crawling and getting stronger, You are amazing and your family support is an inspiration. God Bless you!

  12. God has been so gracious to your family by giving Melody to delight your hearts with His amazing love through her. She’s a precious gift, not only to you but to many who know and love her. Jesus gets all the glory! Great things He has done through hour precious family—every one of you!

  13. Hooray! This is such a significant post because it clearly illustrates the connections between the activities you mentioned, how one skill builds upon so many others. With all of the “she’ll never…” comments you have heard, it is abundantly clear that there is no reason for any parent of a child with any disability should do anything but ignore such statements. THANK YOU and your family for all that you have done and continue to do for and with Melody!

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