A tale of two loving sons

By Kriss Giesen

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 years old when their little sister was born and, truth be told, they weren’t 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, the seizures started. As she grew, so did her list of diagnoses. At 6 years old, she had a laundry list of syndromes, specialists and binders, rows of daily medications and rescue medications, and a house full of therapy equipment. Her older brothers accepted all of these things with grace and love.

Never once have they wished for a different sister, a different life. From the moment she was placed in their arms they became her protectors—that was their gift. Grace has followed. Now aged 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. What grace!

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On a recent family vacation, we travelled (in a tiny car) across the country. For three days, my teenage sons amused their sister as we drove for hour upon hour. They stormed across Civil War battlefields, gazed up at the dizzying height of the arch, rode 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. What grace!

They are also the ones who stroke her hair during a seizure while their eyes fill with tears. They have been bitten, hit and kicked during her meltdowns. They help her breathe through her asthma attacks, and they’ve rubbed aching joints when her condition flairs. What 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 her siblings. Those unsung children who rarely have both parents at any school event (and are usually lucky to have one there), and who miss events because of doctor visits, emergency-room stays or rescheduled therapy appointments—they are grace. The brothers who curl up in hospital beds next to their baby sister and tell their mom and dad to eat breakfast, and not to worry because they can watch over Finn. 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 a 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.

Reprinted with permission from the author and her sons.