The Best Word to Describe Melody (and Her Trisomy 18 Friends)

“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 …

Answered Prayer in the Midst of a Crisis (Video)

Melody (full Trisomy 18) had a healthy, happy summer playing, eating, swimming, socializing, and charming everyone she came across with her adorable smiles. After her many sicknesses from December to March, she lost a bit of weight. Over the summer, her appetite resumed, and she gained it all back and some! A few weeks ago Melody was happy, playing, eating, thriving. The next day she woke up with a fever and threw up. Although, we are not quick to take her to the hospital, we got the sense this was odd. She had no other symptoms of a virus, and she had not, to our knowledge, been exposed to anything. Tests were run in the ER of our local Children’s …

Honoring the Sweetest and Most Vulnerable Among Us on Trisomy 18 Awareness Day (Video Recap)

Trisomy Rule Breaker Today (3/18) is Trisomy 18 Awareness Day. This day is about honoring those who have a 3rd copy of chromosome 18. We stand to learn a great deal from these little ones. One thing, among many, is that their value is not measured by their usefulness, their achievements, or their contributions. Their value lies in who their Maker created them to be. It is a beautiful thing when they are treasured and loved unconditionally (even if they only live a few minutes). Melody’s 10th birthday was definitely an opportunity to honor our sweet Trisomy 18 girl. Sadly, Melody had a series of sicknesses leading up to her birthday. She seemed to be improving, but on her birthday, she …

A Decade and Counting! (Video)

Melody, full Trisomy 18, turned 10 years old! See the video recapping 10 years with our precious girl… Stay tuned for the next update to hear how she ushered in her 10th.

The Road to Recovery in a New Set of Wheels (Video)

When Melody turned five, some relatives gave her money for a pink Porsche. It was definitely a nice addition to her 250-person birthday bash.😊 A couple of years later we took an outstanding Doman training to learn how to help her with her development. We were trying to figure out ways to motivate her to crawl more, which is extraordinary for her brain. We told her ONE time that if she crawls to her car, she gets a ride through the house. She has crawled countless yards for that car since then. It is just one example of how much she understands! Melody has been healthy for two and a half years now, but at the end of May, she …

It’s Official Melody Jean Fans…She turned Nine!

We are thankful for all the Lord has done in and through Melody’s life. We stand in awe of how well she is doing in her little journey of life.  This past year, Melody has spent time with old friends… …and made new ones. She has grown in her mobility skills and… …had lots of playtime. Melody has grown intellectually. One of the many things Melody’s sister, Hannah, taught her this past year is the Romantic composers (with Glenn Doman’s teaching style). She has taught her their names and various facts about each one. Hannah also plays recordings of each composer’s music while Melody crawls to the card with that composer’s picture. Melody loves that! She is partial to Chopin …

Melody is in Motion in Multiple Ways…

Although Melody has some limits in her ability to get herself around, her repertoire of transportation has expanded in the last few months. Melody got a fancy little wheelchair in the last year that was tailored for her. I have to admit that it was a bit of a surrender to get Melody a wheelchair. I was holding out for her to be able to walk instead. However, I am happy now that she has a means by which she can move herself around independently, particularly when she is at church. It turns out that it has not been a hindrance to her progress in crawling or walking at all, as she has made exceptional progress in those areas. Amazingly, being …

Incompatible with life? Let’s take a look…

Melody was born with full Trisomy 18. We were told she was “incompatible with life”, and she was sent home on hospice to die. She is now eight years old and counting! We are abundantly thankful for how well Melody is doing physically. When Melody was born, she had severe sleep apnea. We are deeply grateful for Sandra Coulson, a speech therapist, who gave us a simple system for remedying that. Within one week of implementing her system we saw significant improvements in her breathing. Within a month she no longer had any signs of apnea. Six years later, she still breathes beautifully and has no evidence of apnea. Melody was born with significant holes in her heart. We had …

Count Your Many Blessings…

As we celebrate our 8th Thanksgiving with Melody, we can not help but reflect on what God has done in her life. There is a song that we sing each Thanksgiving that says, “Count your many blessings, name them one by one, count your many blessings, see what God has done.” If we were to “name them one by one” we would surely fill a book with all that God has done in and through her life. I certainly will not claim it has been easy. As I have noted before, easy is not our goal. Love is. Often times the greatest blessings and the wonderful works of God stem from our greatest trials. As we contemplate the blessings, one …

One Intelligent Little Girl

Melody is making remarkable progress with her army crawling. At the time of the last post she was cruising along at about 20 yards a day. She has subsequently made it to 30…then 40… and recently 50 yards in one day! That, my friends, is half a football field. That would be a significant undertaking for anyone to army crawl half a football field (in high altitude no less), but especially for one as little as her. I am sure her military fans can appreciate the strength required to do this. 😊 As for Melody’s intellectual progress, she never ceases to amaze us. When she was born we were told she would be “mentally retarded”. I remember asking a nurse …