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 …

Melody’s First Birthday!!!

Melody entered the world with much fanfare, and she was not about the let her first birthday pass incognito. The expectation of Melody making it to one year was low, but by God’s mercy here she is.  The expectation that people should show up for her birthday party also seemed like it should be low, given that it was Super Bowl Sunday, there was snow on the ground, and it was sick season.  But somehow the girl managed to celebrate her big first birthday with about 300 of her closest friends! We are so thankful for all the wonderful people who contributed to making Melody’s birthday exceedingly special!  We are particularly thankful for our friend Jamie who is an exceptional organizer and helped …

Melody is 9 Months Old!

Little Melody is nine months old and counting! Our little girl is gaining strength. We were spending about 9-10 hours a day feeding her.  She just made a nice advancement in that arena and has become more efficient.  It still takes a bit of time to feed her, but we are thankful for this turn of events! Melody’s lack of neck strength has been one of her more pronounced weaknesses.  She is making extensive progress in this area.  She likes her exercise ball and is happy to lift her little head when she is on there. Melody’s newly acquired neck strength has been a conduit for some exceptional progress in other areas.  In the past Melody rolled over but her …