What My Sons Taught Me About How to Love My Special Needs Daughter

baby sister

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 baby 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 six 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 melt-downs, give expert hugs and kisses, snuggle her to sleep when she needs it most.   They are 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 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, danced on the street to jazz music.  Grace

They are also the ones that stroke her hair during a seizure, while their eyes fill with tears.  They have been bitten and hit and kicked during autistic melt-downs.  They help her breathe through her asthma attacks, and have rubbed aching joints when her ED flairs.  Grace

The dictionary defines grace as doing honoring 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 grand march, at his senior prom, to pick up his sister and take a picture and give her a balloon.  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.

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Kris Giesen
Kris Giesen is the mom to three extraordinary kids: an upcoming college freshman (yikes), a high school junior and her little Bird, who will be in first grade. She’s a mother, teacher, writer and coffee addict who has a bit of an obsession with all things Jim Henson and would be completely misunderstood without her amazing partner in crime, Patrick (aka Big Pirate Captain Daddy… because some things you just can’t make up). Follow her blog, Birds in the Nest.