I fell into bed last evening with this on my mind. That by mentioning only a few of the longer-surviving of the trisomy babies I know, to make one point, I left out the biggest part of the truth about what the fight entails. The literature about babies with conditions linked with the coined phrase, "incompatible with life" and termed "lethal," states that most of these babies will not make it to term. That most who do make it to term and survive birth, will not live long. We were quoted, days, weeks, 2 months. Because of this information, even most medical professionals do not have any sort of hope to offer expectant (or new) parents. And without hope, many will endure a pregancy filled with despair, added to the necessary grieving. Or will choose to end the pregnancy, thinking, "What difference does it make?"
What no one seems to share with parents is that there is hope. Hope that you will fall helplessly and madly in love with YOUR child, regardless of the number of days, hours, or months your baby lives. That your baby will look like his or her relatives. That you will love and kiss your baby's face, even if there is a cleft, or something else unusual. In fact, you will come to love your baby's club foot or cute hands as your favorite features. And if your baby is not a long-term survivor, you will long to relive the moments you shared with him or her again, and again. Or even "just one more time." That you will savor each beautiful photo of your child's life. That there will not be one moment when you regret the decision that you made to hope for life, and wait for God's plan to be unveiled. That you will see, smell, feel the weight and softness of your child, and know you have in your arms an intentional creation of God, a person who was created in God's own image. That God's image must not have to do with physical "perfection."
And if you ask the moms I know who have miscarried babies, or had babies born still, even they will tell you that each baby is remembered, and is indelibly written on their hearts. Most of these babies have names given by their families. You should read the long list of comments left on the Bring the Rain blog for National Day of Remembrance for pregnancy and infant loss to see the impact a brief life can make.
There is always hope when you open your heart to love and to God's gifts.
So meet the rest of the babies who have graced dear friends' lives, and whose brief, but spectacular lives have made a lasting impression on my heart. Whose parents chose to trust in the hand of a personal and all-powerful, all-knowing God who does not make mistakes. Who did not view their babies as incompatible with their lives, despite a diagnosis of Trisomy 18 or 13.
Meet Christian Dale, Eva Janette, Macie (T13), Maddox, Mary Grace, Nathan (T13), Poppy Joy. And I can't leave out Asher (who did not have T18 or T13). Each a precious child given God's breath for their time on Earth, and now comfortably seated on God's (apparently spacious) lap! Each fearfully and wonderfully made, and not a mistake to be "fixed."
See! I will not forget you . . I have carved you on the palm of my hand!
The Trisomy 18 Connection
1 month ago