Melody's Blog

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 …

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 …

In April one of my daughters and I were planning to go to a training at the Institutes for the Achievement of Human Potential (Glenn Doman’s method of teaching). Due to COVID-19 restrictions the Institutes had to cancel their class. In 65 years of teaching classes to parents they have never had to cancel. For the first time ever they hosted it on-line, which was ideal for us, as I did not want to leave my little love for a week. I went into this on-line training with high expectations. All of them were exceeded. This was an extraordinary time of learning how to help our sweet Melody progress. And progressing she is doing! We learned that the highest priorities …

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 …