Melody's Blog

When Melody was born six years ago, the prognosis we were given for her life was that it would be brief.  Since it appeared that we were not going to have the opportunity to celebrate annual birthdays with Melody we purposed to celebrate every day we had with our sweet and precious girl. Each week was a significant milestone and treasured as a gift.  It is a beautiful thing when the little fragile ones amongst us know only love.  Life is indeed precious. When Melody left the hospital as a newborn baby she was too weak for a standard car seat.  She had a car bed. The day she came home the hospice nurse rushed to our house in a …

Melody is a reminder of how precious the gift of life is. She has made extraordinary progress this year. She is getting stronger… Melody has orthotics now, which have helped her gain strength in her legs.  The orthotics help provide the balance she needs to practice walking and standing.  The more she uses her muscles the more strength she gains.  We have been amazed at her newfound strength. …more engaged… Melody’s OT worked with her on her first Thanksgiving craft. …and full of personality! Joe was trying to read a book one day when he was in charge of Melody.  He tried to get her to look at her book, but she decided it would be more fun to look …

Melody’s Progress Video (Click on the link above to see Melody’s 2 minute video of her latest developments.) Brandon, a remarkable young man in Canada who has Mosaic Trisomy 18 (meaning not all his cells are affected) noted in his high school graduation speech, “Sometimes the greater the challenge, the sweeter the victory.”  In some respects that insightful statement sums up Melody’s life. When Melody was 18 months old she was assessed to have 100 apnea episodes in an hour – ten is considered severe.  Sandra Coulson, a speech therapist, helped changed all that.  Melody no longer has sleep apnea.  Her gut is now healed through the help of a natural practitioner.  That is a assuredly a sweet victory.  Her health is …

Melody’s birthday party video recap Melody (full Trisomy 18) turned five years old! She got a special new dress for the occasion… and with good reason. It is not every day a little girl celebrates her 5th birthday with 230 of her closest friends!  We celebrated Melody’s 5th and had an exceptionally sweet celebration.  We are ever so grateful for the many people who value her life. Our wonderful friends from church helped us prepare for this grand event. The day before the party a car pulled up in front of our house.  It was none other than Melody’s grandma and great-aunt from California!  They surprised us by joining us for this significant milestone. They, along with many other people …

In Bev Linder’s outstanding and insightful book Un-Special Needs, she brings attention to the “normal” needs our children with disabilities have.  One of those needs is to have purpose in this life.  Bev observes, “We all need to know that there is a reason, a purpose for taking up space in this world.”  She goes on to share her conclusion after her vast experiences in the disability world, “Individuals who have difficult challenges of any sort are more, not less, equipped to make a dramatic and lasting impression on people and are therefore more, not less, qualified to impact this world in a positive way.” For the last few months Melody’s life has been rich and full and definitely not …

When Melody was fourteen months old, she had an incident that was life-threatening.  She was quite sick, so I brought her to the Special Care Clinic at Children’s Hospital.  The assessment was made that she needed to be admitted.  While waiting for admission, Melody went south.  She was limp, lethargic, and all color left her face.  I carried her lifeless little body down the hall to the emergency room, overcome with grief, as she appeared to be on her last day. Melody’s daddy came to the hospital, and Melody H. brought our other children out to be with us.  Our amazingly faithful pastor and his wonderful wife came to our sides for what was presumably Melody’s last day on earth. …

There is a prevalent assumption in our culture that we all have the right to have healthy, happy, perfect babies.  Often expectations are the greatest enemy of gratitude. When Melody was born and we found out she had Trisomy 18, it necessitated a painful surrender of all expectations regarding the future of our baby.  We had to surrender the little girl we thought she was.  We had to surrender whether our sweet baby would ever eat, walk, talk, etc.  In fact, we had to surrender her very life as we did not know how long she would live. It was excruciatingly painful to surrender the future of our precious daughter.  I listened to the song “I Surrender All” innumerable times, shedding …

We have had a blessed summer and have enjoyed our time with little Melody.  This has been a wonderfully stable season for her.  Her sweet little personality is shining forth, and she is more endearing than ever.  She is communicating considerably more, even without words, which takes a bit of creativity and talent on her part. 😀  The best word I can think of to describe Melody is lovable.  She really is a delightful little girl! We wanted to get Melody an outdoor swing for the summer.  However, all the disability swings we came across were too big for her.  Her neurodevelopmentalist recommended the Wingbo.  This was the perfect solution.  In this swing Melody does all the work.  So she builds …