Melody “Teaches” the Doctors, Travels to Texas, and Touches Lives

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 …

A Crisis, A Life-Saving Decision, and the Notoriety That Ensued

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. …

Look Who Turned Four!!!

When Melody turned one it was an extraordinary event.  Back then we could not have imagined the remarkable milestones she would reach.  Yet, here she is FOUR years old and thriving!  We stand in awe of what God has done in her life.  Melody has had an amazing year.  As we reflect back on the past year we can see that she has: Grown: Melody has gained some weight and grown in height as well.  Last year on Melody’s birthday she was in the 95th percentile for height and the 50th percentile for weight on the Trisomy 18 growth charts.  We are pleased to announce that she is now in the 95th percentile for both height and weight!  She is even on the …

Blessings Beyond Our Expectations

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 …

Melody’s Grand Adventure

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 …

Happy Father’s Day From Our Little Daddy’s Girl!

Melody just loves her daddy!  She lights up when he holds her.  Play time with Daddy elicits incredibly sweet smiles from her. Melody entered this life into her daddy’s hands. A few weeks later, on the day pictured above, we thought she would pass into eternity in his arms. At that time Melody’s life was a bit tentative for a couple of weeks, but then she turned a corner and kept marching. She grew a little. And a little more. For quite some time she was pretty oblivious to her daddy, as he was not the one who spent the majority of the time feeding her.  Eventually she went through a developmental stage where she was able to connect with him more. …

Taken Down…But Coming Back Strong!

Sweet Melody certainly keeps us on our toes, and more importantly on our knees.  We had an incident recently that renewed our gratitude for yet more time with our little love. Thankfully, in the midst of it, the Lord once again directed our steps, and Melody got the support she needed to get through this one. On Friday, March 11, in the late afternoon Melody suddenly became very sleepy and was difficult to awaken.  We put her on her C-PAP to give her support for her breathing, and even then she wasn’t consistent in being able to maintain good oxygen levels.  I was praying for wisdom as I was analyzing Melody’s status.  I communicated with Melody’s Daddy by phone, as …

Happy 3rd Birthday Melody!!! Part 2

As we celebrate Melody’s birthday we cannot help but reflect on the extraordinary developmental milestones she has achieved.  Children with Down syndrome (Trisomy 21) typically sit up, crawl, walk talk, run, play, etc.  That is not our baseline for Melody.  Children with full Trisomy 18 have significantly more developmental challenges. Everything Melody does is above and beyond what she “should” be doing.  Melody’s physical strength increases weekly, her coordination keeps advancing, her determination is remarkable, and her intellectual capacity is beyond anything we ever would have expected.  (She seems to indicate that she knows her colors, numbers, etc.)  Best of all she is incredibly engaged and loves being a part of things!  She interacts with us in a precious way.  Her sweet personality …

Happy 3rd Birthday Melody!!! Part 1

It is with much awe and gratitude in our hearts to the Lord that we are pleased to announce Little Miss Melody is three years old!  Melody has most certainly come a LONG WAY since she was born. Melody’s health is better than it has ever been.  Thanks to Sandra Coulson, Melody has experienced extraordinary improvements in her most significant vulnerability, her breathing.  Although we have to monitor Melody closely, it appears that for now she does not need a C-PAP (provides positive pressure to support breathing while sleeping) unless she has congestion from sickness.  This is remarkable, given how severe her apnea was!  Melody’s oxygen levels are good.  When she is awake, believe it or not, her levels are …