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 …

Agape Love

In I Corinthians 13 we find a beautiful passage about love.  We can so easily listen to it at a superficial level at ceremonial readings, such as at weddings.  However, in memorizing it and meditating on it, there raises the inevitable consideration of the depth of sacrifice required to truly live in this way. The ancient Greeks used four words to describe love.  One is a family love, one is a friendship love, another is romantic, and the fourth is agape love.  Biblical agape love is not an emotion.  I have heard agape love described as “a commitment of the will to cherish and uphold another person”.* Senator Rick Santorum and his wife Karen wrote Bella’s Gift, which is a …

Melody’s Political Debut

When Melody was first born it was a very difficult time for us, as we were given no hope.  The prognosis was grim, to put it mildly.  At that time, Melody’s daddy found a video by former Senator Rick Santorum, and we watched it as a family. Senator Santorum has a little girl, Bella, who has full Trisomy 18.  The video was very encouraging and offered us our first glimmer of hope. Since then we have read and watched anything we can find pertaining to Bella.  We love the Santorums’ perspective on Bella’s life.  I have thought how wonderful it would be for our family to meet them some day. Rick and his wife Karen recently wrote a book about …

Summer Update 2015

The Scriptures talk about the blessing of meditating on God’s Word.  In Psalm 1 we are exhorted to delight in God’s word and meditate on it day and night.  Our family has found the best way to be consistent with mediating on God’s word is to memorize one verse a week and meditate on it by saying it multiple times a day, thinking about it, praying through it, reading commentary on it, etc.  Currently I am meditating on Psalm 16, one verse at at time.  Since God’s word is so rich it is easy to spend a week meditating upon one verse.  I recently memorized verse 7 of Psalm 16, “I will bless the Lord who has given me counsel.”  …

Two Melodies: The Story Behind the Name

It is official: Little Miss Melody is two years old and counting!  As we reflect back on Melody’s life, we can see that there are many providential aspects to her story. One of which is her name.  As soon as we found out our little one in the womb was a girl we named her Melody.  We named her after our family friend Melody H., who was at that time our babysitter and our girls’ violin teacher. Shortly after we named our baby we had an incident that confirmed that “Melody” was indeed quite fitting.  Melody was surprisingly active in the womb.  Yet, as it usually goes, as soon as one of the children tried to feel her move she …

Melody is 16 Months Old and Counting!

Melody is 16 months old and marching right along!  She is a happy little girl and has become quite engaging and immensely charming. She loves to be with us and is more social than we would have expected.  In fact she is so used to having us around that she falls asleep for her nap more readily on her mat in the family room where her siblings are than she does in her bed by herself.  Her siblings can be talking, laughing, playing piano, etc., and she just falls right to sleep.  I think she figures, “Why on earth should I ever have to be alone when there are so many people around here that just love to be with …