When your 14-year-old daughter suffers a severe spinal cord injury, parents pivot to give her the best life possible.
It was a week after Claire Senita’s 14th birthday, and to hear her father tell the story, he and his wife, Emily, were chasing around three kids at different life stages.
Their son, Mark, 17, was heading toward graduation. George was heading for the Marine Corps. Claire, the happy-go-lucky, effervescent middle child at 14, started to show an interest in tumbling and gymnastics. And little Molly, the baby sister Claire prayed for nine years, was the adoring five-year-old sister to her big sister Claire.
“I was thinking that the day before Claire’s accident, we were all running around, attending activities, and keeping a five-year-old entertained.”
Claire’s mom, Emily, worked as a caregiver; usually nights and weekend so she could be home with the kids.
Tumbling Fail
Claire had joined a club tumbling class. “Not to be a competitive gymnast, but to have fun with something in which she showed interest,” Joe says.
It was one of the early tumbling classes where Claire tried a forward roll trick, and broke her neck, and injured her spinal cord.
Her injury affects her hands, and she is wheelchair-bound. Claire is classified as incomplete. “She has use of her triceps, biceps, and some use of her hands,” relates Joe. “Thank God! . That was an absolute blessing that she could still use her cell phone!”
All for One, One for All
What’s a family to do? After all the surgeries, therapies, and fittings for specialized equipment, the Senita family rallied around Claire and treated her as usually as anyone else. She was their daughter, their sibling–and nothing could change that.
Joe opines, “After Claire’s accident, we still had those same “kid” issues. Well, it’s just that we also had to contend with a spinal cord injury, and so 2006 was a hectic year.”
For Emily, being a caregiver came in handy. “It’s still different when it’s your kid because there are all the emotions that go along with it. When working with other people, you still have feelings, but you can always step away.”
Handling Changes
He continues, “My son Mark graduated from high school; Claire got hurt on May 9th of 2006.
After my son graduated, his girlfriend gave birth to a little girl. On June 15th of 2006. And then my son George, Claire’s brother, went into the Marine Corps boot camp.”
Joe was 40 when Molly was born, and then the little granddaughters came. “I was born when my dad was 40, and I asked him how he survived.” “He laughed and said, ‘They are the ones that take care of you when you are old!’”
So Joe looks back at that traumatic period with some sadness for Claire, but with gratefulness for having his granddaughters. Claire has trouble with her arms, but as Emily relates, “Claire had a goal to get stronger and hold that baby!”
And, she did.
“You know,” Joe looks back, “When Claire had her injury, to have Molly and the other little ones around just absolutely was able to brighten everyone’s day,” says Joe. And that was–and is–a blessing.”
Generational Relationships
Joe describes the relationship between Claire and Molly as extremely close. “Claire and Molly are good buddies and very supportive of each other.” Joe muses.
“It’s a beautiful relationship, and I’m sure it would have been regardless of the injury, but certainly, it’s a special relationship.”
But Joe, too, has a special caregiver relationship with Claire that goes well beyond the perfunctory duties of spinal cord caregiving. He’s a bit reluctant to “sing his virtues,” but his pride in his children comes through his ability to set aside some of himself to give Claire the best life she can have.
“I’m a consultant,” and in March 2020 the pandemic forced Joe to work at home. He and his wife, Emily, had separated in 2018, but both assured us the separation was amicable and had nothing to do with Claire’s injury.
“Claire and Molly live with me. So since then, I have been the primary caregiver. And Emily would come over and assist, just like a mom–very well, until she was in a car accident in August of last year, and so she has not been able to help.
Before the car accident, Emily would come in from 2:00 to 8:00 and help with the bowel program and all the “female-centric” things.” But as the pandemic held on, Joe, like many people, especially consultants, continued working from home, which enabled him to be with Claire all day.
Friends Help Too
Joe adds, “Claire has another caregiver, her good friend, who’s been with her since the accident.” Claire and her friend have been friends “since the crib,” says Joe. And Emily would bring Molly and her tricycle to the rehab center to make it a fun visit for all.
At the beginning of Claire’s recovery, Joe would take Claire to school, get her to bed, and work with her at night as needed.
By the beginning of ninth grade, Claire was ready to go to school. “I’d take her, and Emily would pick her up.”
So, Joe and Emily created a balancing act to care for Claire and now her siblings. And it worked for them.
Balance that!
“It’s a balancing act, right?” asks Joe, rather rhetorically. Now that Claire is an adult, Joe says she has taken over her health insurance, doctor visits, and therapy appointments. “I’ll go with her if she wants me to, as will Emily, but Claire drives now and is quite independent!”
For Joe as the caregiver, he admits it’s hard not to let this injury consume him and become his complete and total identity.
Five-String Therapy
Joe consciously did this for himself by playing music with friends. “I’ve always enjoyed playing music. So, we consciously made an effort to get together once a week to play.” Joe plays the banjo, and the joy he gets from the once-a-week jam sessions has done wonders for him.
“It’s a blast. I call poor man’s therapy!”
Intrinsic Rewards
For Joe, the most rewarding part of being his daughter’s caregiver is seeing how she has grown into a capable woman.
“And for me, it’s frustrating for her and me because it’s difficult to see somebody you love in a spot where you know that no matter how good a job you might do, the rewarding part of it is knowing that you are doing what you can do, and that they want to be within the constraint,” chokes back Joe.
Joe says to go to be alongside that person as they go through this journey,” he says,
“It does help you become mature as a person overall in terms of sorting out what’s important and what’s not essential in life.”
Emily says the experience was positive. “My gosh, I think that it showed me that I have more determination and drive and compassion then I thought I did.”
Emily also admits to “burnout.”
“You get angry, you get frustrated, you get resentful. You know that all of that comes into play, but the overwhelming emotion is love.”
She’s a “Rock” Climbing Star!
And for Joe, to see Claire when she plays wheelchair rugby (before she broke her leg), goes waterskiing, and even rock climbing with the Shazier group is rewarding.
But what has been the most challenging aspect of being the caregiver?
Dads Like Fixing Things
For Joe, the most frustrating thing is that he cannot make “the thing” go away.
“I help her stretch, and I see her in pain and frustration,” he admits.
“But,” he is quick to add, “we were very fortunate that Claire, despite everything, has had a good attitude.”
Emily also took her cue from working with Claire, and earned her nursing degree.
Life Goes On
Overall, Claire is so willing to try things and be helpful too.
“It’s the juggle of work and chores of daily living with the home and helping her that stuff that can be overcome. And you’re just going to have that, no matter, spinal cord injury or not, right?” asks Joe. “You’re going to have difficult days. But the hardest thing is that frustration.”
Joe adds one more activity that has helped and that has been very rewarding at a profound, spiritual level. And the other thing is just trying to look at it that it is a privilege to be able to work with her and to be with her.
“When I see my other kids, when they’re all together and horsing around or doing whatever, it’s that much more fulfilling to me. I think that’s something I learned.”
“I try not to gloss over those little glimpses you see out of the corner of your eye. I’m having a good time or whatever I think makes the good times that much sweeter.”
A Spiritual Renewal
The Senitas had fallen away from the Catholic Church, and when the thought presented itself, they decided to rejoin, in a circumnavigable way.
“We started at a non-denominational church,” he says. “But it wasn’t a right fit and we revisited the local Catholic Church.”
Claire received the Sacrament of Confirmation, and the youth pastor came to the house to teach her.
Mass times changed, and the Senitas don’t attend the physical church as often as they’d like.
“But Claire is a very spiritual person, and like everything else, we will find a way to make it work.”