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How the Siblings of My Child With Special Needs Define Grace

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The dictionary definition of grace is simple. As a verb, grace means to do honor or credit to (someone or something) by one’s presence. In my life, this grace has taken many forms, but none is as beautiful or pure as my boys’ love and care for their baby sister.

My boys were 11 and 12 when their little sister was born and, truth be told, they were not that excited. It had been me and them for so long and then they had to adjust to a new father figure and had barely begun to accept that when a new little human was added into the mix.

Fionnula Grace entered the world blue and unresponsive. Soon after her birth, we noticed the seizures starting. As she grew, so did her diagnoses. At 6 years old, she has a laundry list of syndromes and specialists and binders and rows of daily medications and rescue medications and a house full of therapy equipment. Her older brothers accept all these things with grace and love.

Never once have they wished for a different sister, a different life. From the first moment she was placed in their arms they became her protectors, their gift. Grace has followed. At 17 and 18, Finn’s brothers know how to recognize and time her seizures, administer her medication, hook up and use her feeding tube, utilize her rescue medication, handle meltdowns, give expert hugs and kisses and snuggle her to sleep when she needs it most. They’re her ninja buddies, hide-and-go seekers, joke tellers, secret keepers and best friends. Grace.

On a recent family vacation, we traveled (by tiny car) across the country. For three days, my teenage sons amused their sister as we drove hours every day. They stormed across Civil War battlefields, gazed up at the dizzying height of the arch, road amusement rides that were much too small so she could hold their hands, swam in the ocean, found shell after shell and danced on the street to jazz music. Grace.

They are also the ones who stroke her hair during a seizure while their eyes fill with tears. They have been bitten and hit and kicked during her meltdowns. They help her breathe through her asthma attacks, and they’ve rubbed aching joints when her ED flairs. Grace.

The dictionary defines grace as doing honor to someone by your presence. As a parent of a child with special needs, I define grace as their siblings. Those unsung children who rarely have both parents at any school event (and are usually lucky to have one there), who miss events because of doctor visits or ER stays or rescheduled therapy appointments — they are grace.

The brothers who curl up in hospital beds next to their baby sister and remind their mom and dad to eat breakfast; not to worry, they can watch their sister. Grace. The 17-year-old who stopped during the grand march at his senior prom to pick up his crying sister, take a picture with her and give her a balloon and flower from his date’s arrangement. He walked the rest of his grand march with her. Grace. The 16-year-old reading “Pete the Cat” with the same funny voices 100 times because repeating the same story calms his sister down. Grace.

Grace can take many forms, but none has been more clear, pure and consistent than my boys and their love and acceptance of their sister.

Follow this journey on Birds in the Nest.

Originally published: July 28, 2015
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