Jacob’s Smile

Fifty weeks.

Three hundred and fifty-one days.

Such a short amount of time to make such a big impact on the world. An impression, whose ripple effect would be felt for years to come.

A brother who all too soon would become a guardian angel.

A special-needs child who blessed his family abundantly.

A quiet world-changer by only 11-months-old.

There was so much to be breathed in and learned during his brief time on Earth.

From just how hard he worked as a baby to meet milestones to everything my parents did to fight for him and his precious life. From turning our living room into a makeshift hospital room with all the medical supplies and equipment he could possibly need to blowing bubbles into his crib and watching his eyes carry his smile. From his first Christmas to spending birthdays at the hospital, so he could be a part of the celebrations.

From the moment our parents let us know that Heaven just gained another angel to seeing his perfect, lifeless body in his casket. From the overwhelming, stormy day he was buried to witnessing our parents grieve through every emotion with their faith at the helm. From watching just how hard our parents worked to keep things “normal” for our family, to remembering a sadness that overstayed its welcome, for far too long.

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He taught us, and the world, so incredibly much, in such a short amount of time.

Jacob has been our guardian angel now for 35 years and not a day goes by that his impact cannot still be felt.

For, even though he was only granted 11 months on Earth, his legacy is still alive and smiling.

Each year on January 24th, we observe National Moebius Syndrome Day: a special day set aside to honor all of God’s incredible children who have taught, and are teaching the world, that a smile is an absolute work of heart. We remember him, and those like him, who have taught the world that a smile has no limits. It is such an honor to share more information about our special guardian angel, and the very rare disease he experienced in his beloved time with us on this earth.

Jacob was born with quite a few complications, including what is known as Moebius syndrome, which is a type of facial paralysis. Jacob was one of the greatest teachers on Earth, and although he could not physically express how he felt through the use of his face, he touched the lives of countless people in so many ways as a pioneer for persevering through his disabilities.

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The incidence of Moebius syndrome is roughly two to 20 cases per million births. Jacob was one of God’s most beautiful examples that we are each fearfully and wonderfully made, perfectly handcrafted in His image. For he was never defined by anything but his own precious personality that he let shine through with every part of his heart and body, showing everyone who met him.

Not being able to physically smile didn’t stop him from bringing a smile to the world. Or stop him from making such an incredible impact, as one of God’s tiniest messengers.

Our family’s prayer in remembrance of our guardian angel is simple: that the world may remember and celebrate each of our differences. May we carry one another through our weaknesses and take the time to learn something new from someone each day God gives to us. Above all, may we never forget our smiles begin in our hearts.