“Incompatible with life.” “Fatal fetal anomaly.” “Lethal chromosomal defect.” “Anguished, short, and painful lives.” These are the phrases being used by the media recently to describe babies with Trisomy 18 pertaining to a recent case in Texas.
There is a word that describes children with Trisomy 18 that is in sharp contrast with the current labels being placed on them. One time I was studying the word “lovely” from Philippians 4:8. It means lovable, endearing, amiable, gracious, charming, pleasing. One commentator, Hurt, wrote it is, “that which calls forth love.” That is the best description of Melody I have ever heard. I could write a book about stories in which Melody has called forth love, so to speak. She draws the best out in others with her sweet and charming ways. I witness this phenomenon on a daily basis. People who meet her are enamored with her. She never causes mischief. She never hurts anyone. She never demands her way. She smiles, laughs, reads books, loves music, swims, drives her pink Mercedes, and has quite a happy little life. She does have vulnerabilities when she is sick, but even then she does not complain. I do not claim it has been an easy road, but there has been joy in the journey, and we just love our little girl!
Melody, full Trisomy 18, is a remarkable 10-year-old child. Anyone who has met her can attest to that.
Every human being deserves the right to be protected from violence. We should not discriminate against human beings who have disabilities even if one does not have Melody’s quality of life. Human beings are valuable based on what they are, not on what they can do. For every human being the world over, equal rights are essential. If we believe that we all deserve equal treatment there must be something the same about all of us. The thing that is the same about us that best explains our equal rights is our humanness. Children with an extra chromosome are no less human than any other child.
Far too often, the lives of children with Trisomy 18 are taken by abortion because they are not seen as equally valuable human beings.
Should a baby with Trisomy 18 have her life cut short because she might not live very long? Let’s imagine a two-year-old whom you love dearly getting diagnosed with cancer. The child has been given four weeks to live. Would her parents purposefully end her life in order to prevent suffering, or would they spend as much time with her as possible?
Likewise, even if a baby with Trisomy 18 is only here for a brief time, we can choose to honor her with unconditional love, acceptance, and compassion regardless of her vulnerabilities. We can have the opportunity to hold her, cuddle her, and kiss her while she is here, just like we would any other baby. We can choose to treat her with dignity.
In light of all that is going on, I highly recommend that you read this tab on Melody’s website. It addresses many of the issues being discussed right now about babies with Trisomy 18 and imparts an alternative perspective. I especially recommend the drop-down tabs called, “Emotional Pain for Mom” and “Physical Suffering.”
We appreciate all of you who have followed Melody’s story and understand just how lovely she is!
(Note that Melody is looking at her favorite sister. She loves all her siblings dearly, but yes, she has a favorite.😉 It is difficult to get her to look at the camera when Andrea is around.)
“Every good gift and every perfect gift is from above, and comes down from the Father of lights, with whom there is no variation or shadow of turning.” James 1:17
Comments 19
Lovely indeed. I was thinking about Melody during all news stories related to the family in Texas. Before caring for Melody and meeting your family when she was only 1 (Amazing!) I would not have given a second thought to the descriptions in the news… it’s the way we are taught in medical school and it is the normalized language about Trisomy 13 and Trisomy 18. While rare, children like Melody, and Bella Santorum, and I am sure many others not in the public eye are each an important counter-narrative. I am sure it is hurtful to hear the language of “not compatible with life” every day, and must make you want to scream out this alternate understanding. Melody’s story, and these beautiful pictures of your family provide that important perspective.
thank you for teaching me, and keeping me connected to Melody’s amazing and lovely life.
Author
Thank you, Dr. Hyman! We appreciate you helping save Melody’s life when Melody was on the 8th floor of Children’s Hospital close to 10 years ago. We are grateful that although eyebrows were raised for sending a child with Trisomy 18 to the PICU, you chose to do it nonetheless. It was certainly providential that you were her doctor that day. We are so grateful for you and the ways you have advocated for Trisomy 18 children since then.
God bless Ms Lovely and her lovely family.
Now that our baby Jesus has arrived, we continue with greetings for a Happiest New Year!!
Thank you for sharing
Amen amen amen!
Incredible! Simply glorious! PRAISE GOD FOR WHAT THE THENHAUS FAMILY HAS DEMONSTRATED REGARDING GOD’S LOVE AND THE OPPORTUNITY TO DEMONSTRATE HIS LOVE AND PLANS FOR EVERY ONE OF THOSE HE CREATES, AND YOU HAVE DEMONSTRATED WHAT HE CAN DO THROUGH PEOPLE WILLING TO GIVE OF THEMSELVES TO DEMONSTRATE GOD’S POWER AND GLORY, BOTH NOW AND IN HIS KINGDOM TO COME! WE CANNOT IMAGINE WHAT GOD HAS PLANNED IN THE FUTURE FOR MELODY AS WE ENTER THE ETERNAL, GLORIOUS HOME HE HAS PREPARED FOR MELODY AND THE REST OF US WHO LOVE AND LOOK FORWARD TO THAT TIME!
Yes! Thank you for sharing on the behalf of those with disabilities. Lovely is a great description!!!
Your family photo shows just how much joy she brings. What a blessing!
Lovely IS the perfect word for her! Actually all of your family has been made even more lovely by her presence!
Oh Jenn I just love everything about this. The way the Lord has lead you all in this journey is ALWAYS a blessing to those around you. You often make me “wish” for the hard, just so I can have the blessings. Thank you all for living the Gospel so well.
God doesn’t make mistakes……& all things are for our good & His glory! Your words were so poignant & so articulate. God has used Melody in all our lives….she is pure joy & you & your sweet family have seen God’s faithfulness, His love, His protection & so much more through Melody’s sweet life! You are one amazing Mama…one amazing family…..faithfully serving ONE AMAZING GOD! We love you all so much!
Jenn, how blessed I am to know your family and to learn from all the Melody has taught the world. Thank you, thank you for sharing your heart and sharing Melody with all of us! I love you dearly!!
It is such a joy to catch up on lovely Melodia and her family. What a blessing you all are. A special ¨abrazo¨ to each of you.
Thank you for the wonderful pictures of precious Melody and family
She makes me smile when I see her smile. Such a blessing she is
Have many blessing in the coming year
Linda
Melody certainly IS lovely! As is her family… and the love you all have for each other. Many blessings in the New Year!!
Thank you for sharing your story . Our daughter has trisomy 18 mosaisim. . Your daughter is so beautiful ..
Dear Precious Family,
We can’t thank ALL of you enough for all you do each day providing the loving care to our precious granddaughter, Melody. Melody has truly thrived on the various educational and physical programs you have carefully researched and then included into her daily routine. Thank you also for faithfully providing MELODY’S STORY updates; updates that have encouraged numerous parents who are on the same journey with their own precious children who have special developmental issues. Melody’s beautiful smile is telling the world just how wonderful life is each and every day.
We would also like to express our thanks to Dr. Hyman for his courage 10 years ago to treat Melody and then his continued encouragement and support to your entire family.
We are very proud parents and grandparents of this amazing family!!!
Melody is indeed a blessing to everyone she meets. She loves life and loves people! She lives in “heaven on earth” at the Thenhauses! She radiates the love given to her. God has the plans for each of our lives and they are perfect! We are merely God’s instruments to carry out what He has given to us! Such a blessing the Thenhaus Family is to everyone! “ Thank You, Lord, for Melody and what she means to all of us!”❤️
This is such a BEAUTIFUL story about love and a LOVELY little girl who teaches us so many things about life. She never causes mischief, never hurts anyone, never demands, she smiles, laughs, enjoys books, music and swims. She’s sweet and charming and so much more!!
Thank goodness for Melody, for she is my Hero! ❤️
I love you guys and its a blessing to know you.
That is my lovely girl! Seeing her in these pictures with her family brings a big smile on my face and warms my heart. I love Melody. Thanks for sharing her and her story with us.