We know that life with a special needs child drains marriage, friendships, extended family, and careers. Another struggle hid in shadows from me until now, 21 years into the journey. While I was so busy managing therapies, multiple specialists, chronic illnesses, and constant challenges with a child who needs so much, my daughter Sophie, only 17 months older than Caleb, was often left to her own.
At 18 months old, Caleb had nine hours of therapies every week at our home. Nine hours doesn’t seem like much but, as many of you know, it was exhausting. The speech, occupational and physical therapists used play therapy to engage Caleb. I was supposed to watch everything they did so I could practice with him until their next visit. Totally immersed in a new world, I didn’t realize that to Sophie, these wonderful people were playing with her brother and excluding her.
One cold February morning, when two therapists were setting up their toys to begin Caleb’s session, three year-old Sophie crawled under the kitchen table and began meowing. In a flash I understood the toll that all of the Caleb-centered activity was taking on my other baby. It fractured my heart and I immediately moved the therapies to a center, where Caleb went with the therapist while I played games with Sophie in the waiting room. Whatever choice I made, I was failing one of my children at any given moment.
For Caleb’s first four years, he and Sophie were best friends. When Sophie had play dates, Caleb would parallel play, happy to be around other kids. Sophie and Caleb liked the same TV shows and loved to do crafts with me or chase each other around the playground. Sophie was endlessly patient with her brother, whose steps would never be as quick or as assured as hers.
A change slipped in like wind beneath a door when Sophie turned five. She invited some friends over. They climbed the stairs and one girl said, “Can your weird brother stay downstairs?”
I felt my heart stop. My breath stop. Sophie looked to me with pleading eyes.
In time-lapse video in my head, I remember keeping Caleb downstairs, physically restraining him as he grabbed onto the handrail of the staircase while he screamed, wailing for his sister. Her bedroom door shut with the click of the lock. Caleb then ran around the downstairs, inhumanly howling for half an hour.
I made one of many parenting mistakes. I said to the group, “Please let Caleb be with you for just a few minutes. He’s just curious and then he’ll come back down with me.”
I waited at the base of the stairs, fight-or-flight breathing, digging my nails into my palms so they bled, hoping he might be accepted and that Sophie could have friends who understood.
Five month-minutes later, the three kids came down. Now I went into panic mode.
“Is everything okay? Did you want a snack?”
“No, said the oldest, “we don’t want to play here.”
“Let me go get Caleb, then you can go back upstairs.”
There was no answer, just the soft closing of the front door. When I got to Sophie, her face was red, balled fists trying to squeegee off tears.
The next year, in another neighborhood, Caleb’s special ed bus arrived ten minutes before the one Sophie rode home from her school. We waited on the front porch, rocking in wooden chairs and waiting for Sophie to walk the quarter mile to our house. On this sunny blue-skied spring afternoon, I felt unreasonably optimistic and decided to walk with the other moms and their children to the bus stop.
After the hiss of the air brakes, Sophie jumped off and ran to me.
“Carolyn asked me to come play!” she said, breathless in that happy way kids are when something unexpected happens. “Can I go?”
Sophie usually had to complete her homework before any play dates but this was her first invitation in the new neighborhood so I said, “Go have a good time, honey,” and took her book bag from her. She happily skipped off to join Carolyn.
Caleb started to yowl. With the high-pitched voice of 22Q, he screamed, the peals echoing down the street. His body went limp and he refused to move, like a block of wet, melting concrete. Then anger contorted him into an unmovable tree trunk.
Sophie pretended not to hear. Other moms stepped away from us, sheltering their children. I picked up my ramrod-straight screaming boy and carried him the quarter mile home, eyes straight ahead, tears wearing well-traveled tracks down my cheeks. Sophie was never invited to that girl’s home again and I later learned that we were the gossip at that night’s neighborhood swim meet.
In yet another new neighborhood in another state, kids kept riding their bikes through our backyard which made our German Shepherd bark, which made Caleb smack himself in the head with such force that he often drew blood. I would run out and ask them to please not ride through our yard, but kids are kids. I became that mom on the street and no one wanted to come to our home.
I then implemented Girl’s Day. One day a semester I would keep Sophie home from school for breakfast and lunch out and a trip to the mall or museum or wherever she wanted to go. It was a refreshing day for both of us. I also allowed her one day per semester where she could ask to stay home, no questions asked.
On her first day of sixth grade, Caleb broke his femur at school. Transported to the hospital by ambulance and immediately sent to surgery, I had no way to notify Sophie because in 2006 she didn’t have her own cell phone. All I could do was ask the school to tell her that she was to walk home from the bus stop and let herself into the house, which I would normally tell her in the morning. Terrified, she raced home and called me from the landline. The next four months were excruciating for all of us and Sophie was once again forced to do more by herself than she should have at that age.
Irrespective of Caleb, our home was not a happy one. Watching Forrest Gump with Sophie, during the scene where Jenny and Forrest pray in the cornfield for God to make her a bird so she could fly far, far away, I paused the movie and took Sophie’s hands in mine. “You do this,” I said. “You use all of the amazing talents and intelligence and drive that you have and you fly wherever you want to go.”
When Sophie was only eight she told me that when she grew up she wanted to get married, get a cat and buy a house with a basement so she could make an apartment for Caleb. In that instant, her struggles and sacrifices tore through me like adrenaline.
“No, sweetheart,” I said in one of those moments that you remember and only then understand its importance. “You go live your life. I’ll take care of Caleb. He’s my job, not yours.”
The resolve on her face collapsed into a flush of relief. She knew the importance of the commitment she had made to me and when I lifted it away, her entire demeanor melted, bringing back the face of a child who had been wrestling with a very adult decision.
I have many friends who have asked their healthy children to take over their special need sibling’s care when the parents are no longer able to. I so understand this impulse. I feel the crushing pain of wondering who will care for Caleb when I am unable, and I empathize with those who crave the peace of knowing that their most vulnerable child will be cared for with love. I don’t judge any parent or family who chooses this path.
Sophie graduated college this past fall and is planning to enter the medical field. Though she will never be responsible for her brother’s daily needs, I have no doubt that she will change the world for those in need, honoring him in a way I never knew existed.
I fully realize that not every sibling will have the interest or aptitude to work in their special need sibling’s medical field. I’m sharing this to give hope to all of us in Neverland. Hope that the children who have such heavy childhoods might create incredibly fulfilling adult lives.
We all do the best we can every day. When there’s nothing left, we have to dig way down deep to find the energy to give to our other children. We won’t always succeed but the times that we do bring rain to a desert, even if it’s just enough to bring one desert flower into bloom.