“He’s perfect.”

3 years ago today, our son Teddy (full trisomy 13) was born. We held our breath waiting to hear that first cry, knowing there was a chance it would never come. We knew the statistics- that there was a good chance he wouldn't survive delivery, or wouldn't be able to breathe on his own after birth. We were so relieved to hear his sweet little cry. What is usually one of the saddest sounds in the world became the most beautiful sound in that moment.

As they handed him to me, completely overwhelmed with emotions of love and fear, joy and exhaustion, doubt and certainty, one of the few things I remember saying was,

"He's perfect." 

We spent the prior months being told all the things that could be wrong with him. 

He'll have severe apnea. 

He'll likely be blind and deaf. 

He won't live more than a few hours or days. 

He'll be suffering, in pain his whole life. 

He'll be severely mentally challenged and likely won't know who you are. 

His brain, his heart, his kidneys are abnormal, which will lead to...

All the negatives. 

But as I held him, all I could see was my perfect little boy. We didn't know what was coming, how long we would have with him, or which of those defects he would actually have. But we didn't care in that moment. He was perfect. He was ours. Our son. Our sweet, chubby, snuggly, adorable son.

Our love didn't see his number of chromosomes, or the number of medical abnormalities he had, or the massive amount of time we would have to spend caring for him for as long as he lived. Our love only saw our perfect, precious son.  

Teddy went on to thrive for a beautiful 11 months before being called home due to his serious heart defect. But those 11 months were spent almost entirely at home, comfortable and happy. Teddy was able to breathe entirely on his own throughout his life. He could see and hear. He most certainly knew who his family was. Even on his first day of life, he was responding to our voices. A neurologist evaluating him during his 1st week of life told me it was so encouraging when she observed how Teddy stopped crying and calmed down when I picked him up and said it was a great sign of recognizing who his parents are. There were so many nights he wouldn't go to sleep until his daddy rocked him to sleep.

He looked towards our voices, played with our faces whenever we got close to his hands, cooed happily when we held him, played with toys, smiled when he heard his big sister laughing and being silly, stared intently at his beautiful light machine in his crib, and SO much more that I cannot include it all here. He even ate small amounts of food by mouth and greatly enjoyed the different flavors we gave him.

But even if he never did a single one of these things, he still would have been "perfect" in every way to us. Because our love for him wasn’t measured by his abilities, or length of life, or number of chromosomes. Love is beyond measure, beyond ability, beyond time.

The world sees genetic abnormalities as imperfections. Most doctors push for termination. So many parents see it as a burden not worth changing their lifestyle over. Look no further than the recent viral story about the parents who called their son with Down syndrome a “glitch” and a poor “outcome” unworthy of life.

Teddy’s own doctor initially denied him basic life-saving treatment because his condition was, quote, “lethal.” Translation: he’s not “perfect.” He won’t have as long of a life as most people do, and he will need a whole lot of medical care, so you’re better off just letting him go right now.

But we saw beyond his diagnosis to the precious fighter he was. We saw his will to live and to grow. We saw what a truly perfect boy he was, from his tiny extra digit (his “balloon” finger, according to his big sister) to his squinty left eye to his abnormal but full, precious, loving heart.

Of course I wouldn’t have chosen a trisomy 13 diagnosis if there was some way to remove it from him. Of course I wouldn’t have chosen his many medical issues, for his sake. I would have given him my own healthy heart if I could have. I would have taken away every disorder and pain if there was any way. Oh, how I wished there were some way. But extra chromosome or not, I would have chosen him, his love, his smile, his joy, again and again.

He was our Teddy bear, fearfully and wonderfully made just for our family, and he was perfect. And we long for the day when we're reunited with him in Heaven, in true, eternal perfection.

Are you facing a trisomy diagnosis or caring for a child with a genetic disorder? It doesn’t matter their diagnosis, their medical abnormalities, or their length of life. Your child is “perfect”, too. Every child is wonderfully made and compatible with Love.

“For You formed my inward parts;
    You knitted me together in my mother's womb.
I praise You, for I am fearfully and wonderfully made.”

Psalm 139:13-14a