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 book about their daughter who has full Trisomy 18 like Melody. It has blessed us profoundly. Their oldest daughter Elizabeth wrote the introduction to the book on the topic of this type of love. She gives the following description, “This sort of love exists when there is a generous emptying of oneself in the service of another without expectation of a reward.”
It does not come natural to human tendency, and it is the antitheses of the cultural thinking of our day. With Melody in our lives we are learning a little more about agape love.
Elizabeth Santorum certainly imparts wisdom beyond her years as she notes, “Bella has taught me that there are different kinds of love and that the highest form of love is self-giving and chooses the beloved even when it proves difficult. The way our family lives has changed dramatically in the past several years and we wouldn’t have it any other way. Bella is at the heart of our home, a quiet and smiling reminder that every day is a gift. Her tenacity, strength, and unqualified love encourages us daily. We have learned that life is not centered on our individual needs. It is about living for Christ and serving others with a Christ-like agape love. Love is not about what we can gain. It is about what we can give.”
The I Corinthians passage about love is not nebulous or esoteric, but rather quite practical in its specifics: “Love suffers long and is kind.” Apart from Scripture, or other things written based on Scripture, what original writings describe love in this way? Love suffers long, or in other words, is patient. Think about that. Patience is not our natural inclination. As for me, I love efficiency.
Melody, my friends, is the antithesis of efficiency. Prior to Melody entering our lives, I have stood back and admired my friends who patiently educate their children with significant learning challenges or “disabilities”. I was thankful that was not a challenge with which I was contending.
Ironically, Melody’s developmental challenges have surpassed everyone I know. 
Yet we, through the agape love of Christ, genuinely rejoice in every little thing Melody does. Even as one who values efficiency, I have experienced a natural patience with a little girl whose developmental milestones are truly in slow motion. The patience I have with her does not come from me, but rather from abiding in the Lord. If there is any good in me, it comes from Him alone. I will claim that to my dying breath. “My goodness is nothing apart from You.” (Psalm 16:2b)
It is He who gives our whole family a sacrificial love for our dear Melody. We have the opportunity to impart the purest form of love, as we pour into her life with no predetermined expectations of what she will do, give or achieve. Elizabeth Santorum writes of her initial thoughts of her sister, “I only saw dependency, not reciprocity.” Yet, she goes on to say, “As I held her, I saw that her perfect vulnerability would require a more perfect, agape love.”
My dear friend Lori used to say in reference to my difficult pregnancies, “The greater the sacrifice, the greater the love.” Melody brings that principle to a whole new level for our family. We have all made significant sacrifices on Melody’s behalf. Yet, somehow amidst all that we do for her, our love and affection for her only deepens with each passing day.
Melody’s brother is learning to feed Melody. It is a beautiful sight. In part, it is beautiful because it takes a bit of time to feed Melody, and he has the fewest time commitments of all of us. It is beautiful because Melody thinks it is fun when he turns the spoon into a train and accompanies the feeding process with, “Chug-a-chug-a-choo-choo!” The most beautiful part of all, however, is that he is learning the most honorable form of love – agape love. He is learning to give and serve with no expectation of anything in return, except seeing Melody’s charming little smile.
When we have the attitude that serving Melody is a privilege and a high calling, we are less inclined to feel the heaviness of the unique aspects of her life. Jesus said, “Whatsoever you do to the least of these, you do unto me.” Little ones with genetic issues would most certainly qualify in our culture as “the least of these”. We have opportunity to serve Him daily by serving Melody. 
Although we cannot verify the statistics on this with certainty, it is our understanding that about 90-95% of babies with Trisomy 18 are aborted. (Babies with other genetic issues are probably close to that as well.) We cannot help but think that one of the driving philosophies behind that practice is that these children would require too much sacrifice. The premise behind that thinking is that sacrificial love is detrimental to us. We would contend that there are compelling reasons to consider that the inverse can be true.
When Melody pushes the big yellow button pictured here, she can make her duck walk, talk and flap her wings. Melody LOVES her duck! She also has a smaller button that she can use. Melody is smart enough to figure out that if she moves the smaller button under her tummy, instead of touching it with he hand, it still works beautifully, and it is less effort on her part. (
We are in the disability world now, and we know many stories about how these children can bless families, if given the chance. One common theme we hear is that a child with disabilities can have such a wonderful impact on his/her siblings. One mom of a child with a Trisomy 18 baby was interviewed in Labeled. She commented that her other children “have so much compassion, love… and what depth they have!” We watched an inspiring documentary about a family who has six children, two of whom have disabilities. It is an incredibly beautiful story of parents who love their children with genuine agape love. The father wisely noted, “Our two disability children really are not a ‘disability’, if you will. They are actually a great advantage.”
We concur. We won’t ever claim that our journey with Melody has been the easy road. We have walked through significant valleys. We have many demands on our time, limits on things to which we can commit, and elements of unpredictability. Yet God has used Melody’s life to shape and mold our family, give us a more eternal perspective, and give us a glimpse of His perfect agape love, just to name a few of the “great advantages”.
We thank the Lord for our sweet little girl who is a gift, a treasure, a source of much joy, and a continual reminder that we need God’s wisdom each step of every day.
Melody is much stronger now, with much thanks to her cranial sacral practitioner Nan. She can get up on all fours with little effort now and she rocks back and forth while up there. She can keep her head up higher now, which is critical for being able to crawl. She can move one knee, and she has on one occasion moved one hand. Just one hand and one knee to go and we should have a little crawler. We are so proud of her, if you haven’t noticed! (:
“We need to be clear: the quality of a civilization can be measured by the respect it has for its weakest members. There is no other criterion.” Dr. Jerome Lejeune
*This definition of agape love comes from Blue Letter Bible. Blue Letter Bible is an excellent tool for studying Scripture in-depth.