In Bev Linder’s outstanding and insightful book Un-Special Needs, she brings attention to the “normal” needs our children with disabilities have. One of those needs is to have purpose in this life. Bev observes, “We all need to know that there is a reason, a purpose for taking up space in this world.” She goes on to share her conclusion after her vast experiences in the disability world, “Individuals who have difficult challenges of any sort are more, not less, equipped to make a dramatic and lasting impression on people and are therefore more, not less, qualified to impact this world in a positive way.”
For the last few months Melody’s life has been rich and full and definitely not lacking in purpose. Her latest thing is the impact she is having on the medical community one doctor at a time.
A few months ago we were at a celebration for the book Miracles We Have Seen: America’s Leading Physicians Share Stories They Can’t Forget. In that book Dr. Hyman shares part of Melody’s story. Dr. Tracy Price-Johnson, a professor at the medical school, spoke to us after the celebration. She wanted us to communicate with the medical students about Trisomy 18 and impart understanding from the parents’ perspective.
Recently she brought doctors in their residency to our home to meet Melody. It was a sweet time. The doctors were quite receptive to the message of Melody’s life. We discussed the label, “incompatible with life”. The sharp contrast between that phrase and Melody’s life did not go unnoticed by the residents.
Melody is not content to be held all the time when we are out and about like she used to be. When we hold her at church after the service, she wants down. She likes to stand up and do her “ballet” moves. She cannot run like the other children, but she has a desire to move, just like any four year old.
Incidentally, while we were discussing this terminology Melody was standing (while I held her hands), doing her “ballet” moves, smiling, talking, and interacting with her siblings. One resident perceptively noted, “She gives back.”
We are thinking these doctors will likely never perceive Trisomy 18 the same again. Melody put a face to the Trisomy 18 world for them. “Incompatible with life” is a dehumanizing term, with horrific consequences. Now that these doctors have crossed paths with Melody, they will not likely adopt that terminology as a matter of fact.
We understand that Trisomy 18 children are more vulnerable, but they should not be dismissed before they are given a fighting chance.
There are simple things care providers can do to treat these children with dignity like using their name. That may sound basic, but that does not always happen with a child who has been labelled with a genetic condition.
We are thankful for Dr. Tracy Price-Johnson and her amazing work adding in the human element to the teaching of her students.
Melody has never spoken a word (with one exception – see below), but her life speaks volumes.
Here is Melody hanging out with her daddy in Texas. She just adores him. In fact, she learned how to say, “da da”! Of course! Believe me, her inability to say, “mama” is not for lack of effort on my part. 😀
In April we traveled to Texas for a family camp. Melody traveled well. We had an incredible time of encouragement in the Lord and fellowship with some precious people.
In short order Melody made many friends. One evening there was a group of young ladies sitting in a circle on the floor of the main conference room. I looked over and, lo and behold, who was sitting in the center of the circle other than sweet little Melody.
The significance of Melody’s life did not escape the wonderful people we met in Texas. There were people who held Melody, talked to her, cuddled her, doted over her, and sang to her. Yes, that is right, several different individuals found out she likes music, and they bent down to her level and sang to her.
One dad held Melody for quite awhile around the campfire one evening. His wife told me that this was one of the highlights of his time there. It was sweet to fellowship with people from all over the country who so readily recognized the value of Melody’s life.
Melody is a love bug, and we are thankful for her sweet life.
John 10:10 “…I [Jesus] have come that they may have life, and that they may have it more abundantly.”
Melody has joined the ranks of being a part of children’s church, which our pastor teaches during our church service. Melody may not understand the message, but we think it is good for her to be included. It is not uncommon for Melody to put in her two cents during the lesson. Thankfully, our remarkable pastor doesn’t mind and is delighted to have Melody join in during this time. He and his wonderful wife love Melody dearly and have come along side us in an amazing way throughout all of Melody’s ups and downs.
Melody’s standing skills are increasing. One day she was practicing standing with the support of the wall when she saw her shadow. She turned to look at it, and in so doing, she only had the support of a small section of wall supporting her shoulder. Amazingly, she did no lose her balance.
Melody loves this ball.
And she really loves her mama!
We have all learned that we need to adapt our lives to Melody. Sometimes that requires substantial sacrifice, but sometimes not. We have found that disability parks can be more fun than regular parks. 😀
We recently got baby chicks. Melody now has some little buddies that are actually smaller than her.
Melody was able to pet one of the baby chicks, albeit a bit tentatively.
The chick had other plans. 😀
Melody used to be deemed, “floppy” and “low tone”. Not any more – check our her muscles. 😀
Melody’s sister is amazing with her. She is so tenderhearted and loving to her. She often helps with Melody’s exercises, feeds her, and makes sure Melody’s life has plenty of fun and flare. We have noted that Melody often lights up when she sees her coming.
All of Melody’s siblings are amazing with her. She is one loved little girl!
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Your family is an inspiration to all, thank you for these updates!
ah Melody truly inspires me! I love her and this wonderful family!
I so enjoyed reading everything you wrote and looking at the family’s pictures. Thank you for being such an inspiration to so very many people! You touch more lives than you can ever imagine.
Thank you for helping to make life more meaningful.
Thank you for sharing the updates. So happy that doctors are paying attention and learning so much from one very special little girl with the most beautiful smile! Instead of the “little engine that could” she is the “big engine that CAN!” She certainly has blessed many lives on her journey.
What a wonderful update on sweet Melody Jean!! God absolutely made no mistake in placing her in your sweet family! What a testimony you all are of God’s amazing grace, mercy & love. She has taught so many so much in her short life….& she’s no where done teaching all of us to first & formost to trust our lives to our amazing Creator!!!! His plans are not always ours….but His are the BEST!!! Love you all!!!!
Jenn,
Thanks for the update on Melody. She is a true miracle and an inspiration to all.
Loved all the pictures, esp the last one with all the children.
We loved the update on Melody and the beautiful pictures of all of our grandchildren. We are so blessed by God and thank Him daily for all of our children and grandchildren – in fact, we have a very amazing extended family as well, whose love and support continues to overflow daily. Melody you truly a “gift” that keeps on giving. We love you all!
Love, Oma & Opa
Loved this new update of Melody! She is not the same girl! She is moving on to bigger and better things. You see the excitement in her face. I see God’s loving hands in her life…placing her in your family number one, and then the surrounding community of believers that so love and encourage her. It’s beautiful! Should we be surprised? We have an awesome God!
What an awesome post! I’m so glad our mutual friend, Bev, sent this to me. I’ll share a link to this on my Facebook page – Redefine Special – if you don’t mind 🙂
as always the updates on Melody are so uplifting, truly putting a “melody” in my heart! 🙂 Thank you for the time to share these thoughts and pictures. To God be the glory for the great things He is doing and truly seeing Rm 8:28 being lived out … only the Lord knows the long lasting legacy that Melody is leaving and actually the whole family. Love & prayers