Melody's Blog

When Melody was born she was sent home on hospice with no expectation she would live. Her main vulnerability was her extreme sleep apnea. With no support such as a c-pap, her every breath was a struggle and she could have died every time she fell asleep. On Melody’s previous post, my friend Joan commented, “I will never forget the day that you called me and asked me to help you organize Melody’s funeral because that’s what the doctors told you to do – prepare for her passing. I was so honored that you asked me, and I said yes without hesitation, but my heart ached at the thought of it. Through tears we discussed the details, but God had …

In 2013 we received a gift. Her name is Melody. She was 4 lbs., 14 oz. She did not open her eyes, she did not cry, and she did not move when she was born.  Today our little gift is doing amazingly well! This past year she has grown physically and intellectually and has become more connected on several fronts. She laughs, smiles, and communicates more, and has yet more friends who love her dearly.  Melody’s oldest sister organizes quite a bit of nursing home ministry. She plays piano for the residents, and the young people from church sing. This year, Hannah decided to bring Melody to visit the residents. Melody was on a mission to be a blessing to …

(See a sweet video at the end…) Unlike most little girls, Melody is non-verbal and does not walk without assistance. She has some challenges that are unique to her. Yet, in many ways, she is just like any other little girl. Like any other girl she is designed to be a part of a community. She is quite the social girl and loves people! She wheels herself right up to anyone without any inclination to feel intimidated. Like any other girl, Melody loves to swim! She has swim time every week. The physical therapist helps her build strength and balance. Like any other girl she does not like to feel left out. One night, we put Melody to bed while …

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 …