Melody's Blog

Melody, full Trisomy 18, turned 11 years old in February! She ushered in her birthday with some of her family and friends.  This is one of Melody’s good friends who helped celebrate her 11th birthday. Tomorrow is Trisomy 18 Awareness Day (3/18). Melody is definitely, as her shirt expresses, a Trisomy 18 Rule Breaker! In honor of Melody and her Trisomy 18 friends, I want to share a small glimpse of how Melody’s life has remarkable value, meaning, and purpose. I could fill a book with countless stories of this little girl’s impact on others. Melody is a vessel by whom God shares His love with others. For Melody, no words are necessary. A friend who was going through an …

“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 …

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 …

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 …

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.

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 …

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 …

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 …

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 …

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 …