“Incompatible with life.” These are the words that have too often been used to describe someone’s precious child. Sadly, sometimes we are left in this helpless place where science has no known cure.We were told this same thing multiple times as we faced the daunting road ahead of an Acrania/Anencephaly diagnosis. If you find yourself in this state of hopelessness where there is nothing more that the doctors can do, I want you to hear some good news…
Your baby may not have long to live, but he/she is most certainly ALIVE.
The beautiful gift we have as mothers, is this reality of the sucking, squirming, developing life inside of us. And one of my favorite experiences as a wife and mother is that moment when the father too can feel his infant child kicking his hand as he rests it on the mother’s belly. This is one of the most amazing moments … When husband and wife and child are all touching and smiling in awe of the new life that has been created … If you have been given news that your baby’s life will not be long or is nonexistent by society’s standards, don’t let his or her life be taken from you too soon.
I remember receiving the news – it is life shattering. I remember driving home from one of our many ultrasounds and feeling my son kick – I didn’t smile, instead I wept, I felt helpless as a mother, as if my baby was reminding me that he was hurt and there was nothing I could do to save him. This hopelessness came along with the shock of learning such news, but it is also in how the message is delivered that makes one wonder if there is any chance at all at happiness with this child. “Perhaps it would be best to just end it now and try again,” as a doctor recommended to us.
I’ve thought about this a lot, why the terminology and typical procedures for children who are “Incompatible with life” seem so often to reek of hopelessness and speeding up the death. I wonder, when we realize we have no cure, that we have no control, is it our basic instinct to use what control we have to end the chaos on our terms, on our time? The death of a child is always too soon. And what we forget to realize is that these babies who have been given a difficult or hopeless diagnosis are alive right now! They most certainly aren’t “Incompatible with life” because they have a heart beat, they are living, growing, human beings, they are our children! Don’t let a diagnosis take that away from you.
Like I said, it took me some time to come to grips and see the great miracle that was my son’s life, but I can tell you I came to embrace, enjoy and deeply deeply love every moment I had my sweet boy alive and with me. Each kick proved just how strong this little person was. Every hiccup, every jab to my rip, every flutter melted my heart to his sweet, deformed body and I came to realize the sheer joy he had brought to our family. What a diagnosis can’t tell you is how this little one will change your heart! How he/she will no doubt change many hearts and cause many to love more deeply and live more passionately. We immediately claim two sons to our family because our second son lived, and I also hope in his resurrection with Jesus where he truly lives. For these reasons I realize that a hard heart is a far more difficult diagnosis than what our son had. His soft, innocent heart knew nothing but compassion and now he knows heaven! I hope you can find these glimpses of hope and love as you live this difficult journey with your child diagnosed as “Incompatible with life.” Don’t count yourself short, don’t doubt the power of unconditional love. You can do this and your baby will help you through it til God calls him/her. Love fully, remind others to do the same, and know that the miracle that is your child’s life exists for a reason and one day, if not today, the Great Physician will heal all wounds.
May God bless you precious little ones! You are in our prayers.