From Toddler to Teen: Looking Back on Parenting a Child with SA/CRS

by Phyllis Rogers

I am not a birth parent of a child with sacral agenesis/caudal regression syndrome, so I cannot begin to imagine how discovery of this condition in your child turns your world upside down. I am an adoptive parent, and I knew of my child’s condition prior to adoption, and I went forward with the adoption having a pretty good idea of what that meant and being pretty comfortable in the belief that I was prepared to offer a loving home. Still, there were many unknowns. What delays would my child experience as a result of being in an orphanage-type setting during the critical period of her young life? Was the medical report I received really accurate? Were there other conditions that had not yet been identified?

The way in which this adoption took place was one of those spur-of-the-moment opportunities when I was presented with some information about her at a parent gathering and told an immediate placement was needed. I took a leap of faith and said yes, and Jessica became my daughter. It was less than a month between that “meeting,” seeing her photograph, and reading a paragraph description of her medical issues to having her handed to me at the Dulles International Airport. She was 14 months old, and I took temporary custody of her to address her medical needs. The moment she “landed” in my arms, all 9 pounds of her, I was totally in love. None of my concerns about her health or development mattered. She was home. A year later, I flew back to her birth country of Brazil to complete her adoption process. She joined a family of four other adopted children, and after her adoption, I adopted three more. I was well aware of some of the challenges Jessica and I would face, as I had already raised a child who used a wheelchair due to spinal cord injury. None of these challenges seemed overwhelming. I knew people would stare and sometimes make thoughtless comments, as they tend to do when they see someone who is physically different, but we had already developed a whole arsenal of coping strategies for that issue. I knew there would be medical concerns, but I already had experience with those issues, and while inconvenient at times, my experience was that they were relatively minor in the grander scheme of things. I knew there would be social issues being the only kid in school in a wheelchair. We would probably have some hard talks about hard subjects from time to time. Of course, I had the same worries and concerns that every parent has with every child. There were so many unknowns in raising Jessica that I just had to leave it in God’s hands while doing everything I could to educate myself and provide support as needed along the way. Looking back now, I realize I am a much better person for having had Jessica in my life than I ever would have been without her. She has taught me that there is infinite value and potential in every human being, value that God defines, which surpasses all of society’s labels and expectations.

My “plan” prior to my child’s adoption was just to love her and address her medical needs-to have her seen at Shriners Hospital to address her severe knee contractures and to have her seen at Children’s National Medical Center in Washington, DC, for urological needs. I knew she had a single kidney, absence of spinal cord below T7, and a couple of other anomalies-for example, even at 14 months, the soft spot on her head had not closed, and her head was described as “football shaped.” It was likely there were cognitive delays, so I had educational interventions lined up as well. Right away, my “plan” didn’t go as expected. Surgery to straighten her legs was deemed impossible, and so after researching and wrestling with the decision for a year or so, at age 3 both she and I together made the decision to have her legs disarticulated at the knees. While I had second thoughts as I sat in the waiting room during that operation, wondering how much I would miss those tiny little feet, wondering if I was making the right decision, it was, in her case, the best outcome in all respects. Using specially designed prosthetics, she surpassed predictions and for a time she became pretty adept at walking with crutches. Cognitively, she was sharp as a tack, and while institutionalization had delayed her language development (she wasn’t talking at 14 months), she soon soared above everyone’s expectations. By the time she entered kindergarten, she was easily reading at a third grade level. Urological monitoring was ongoing, but there were far fewer issues than anticipated. Physically, she went from just lying in a crib to doing flips up onto and off of the couch, scaling cabinets and counters on arm power alone, and propelling her first “mini” wheelchair at a rapid speed. You might think it is hard to lose a child in a wheelchair during a trip to the mall, but believe me, Jessica could get far in the blink of an eye. Everything she did she did with great enthusiasm.

Once Jessica entered school, there were a new set of challenges. She weighed about 20 lbs and sat less than 18 inches off the floor. That raised safety concerns about how she would cope in an active elementary school classroom. We need not have worried. Jessica self-adapted to just about any challenge she faced. She was invited to every birthday party. She had an amazing group of little buddies as close friends. She excelled academically. She convinced the P.E. teacher that she could play football on the playground right along with everyone else. She took up violin and trumpet in the school band, and her weekends were dominated by adapted sports activities-swimming, wheelchair racing, wheelchair basketball, and so on. At every turn, I had reason to be a proud mom and to rethink all of the limits that society artificially imposes on people who don’t quite fit the standard mold. In junior high school, athletics really took off. Parents of children with sacral agenesis usually think they are going to spend a lot of time in hospital rooms and therapy clinics. It wasn’t so at all. My time was largely spent at the swimming pool, the track, and the basketball court or transporting Jessica from one activity to another. Jessica began competing on a private swim team locally and was very shortly propelled into national and international competitions. We traveled to Canada, Mexico, and numerous states, often scraping together the funds to do so, for competitions. In high school she added national-level track and triathlon competitions to her list of accomplishments and even took to the ski slopes on a mono-ski.

Jessica had a desire to connect with others like herself, who could really relate to what it was like to live with CRS/SA on a daily basis. Some of these connections occurred in wheelchair sports activities, but there was a defining moment for Jessica when she did some research about her condition and was appalled at what she found on the Internet. She didn’t feel the descriptions she found there represented her life at all, and she determined to do something about it. Using social networking like only teens can, she founded an association and with a website and a Facebook group, she began to reach out to parents of children with CRS/SA and to adults as well as her peers. She asked some of her contacts to join her in this effort, and eventually the organization iSACRA was born.

Jessica is now well into her teens, drowning with homework and navigating the high school social scene. She enjoys journalism class and creative writing, music, introducing new members to the iSACRA organization, and talking kids into trying out sports. She thinking about college and career, and she’s competing in swimming, track, and paratriathalon with training and competitions that fill every spare moment. She’s had her share of some medical issues, but being fit as an athlete has helped her to spring back quickly. Ultimately, she is the amazing person that she is partly because of SA/CRS. It has made her adaptable, empathetic, driven, and wise beyond her years. It’s been nothing short of amazing to have watched her grow into the fantastic young woman that she is today.

For me, as a parent, some of the lessons I have learned have been hard ones. It used to make my blood boil when people said things or made assumptions about what Jess could or could not do. Now I realize that a more reasoned approach gets the point across better than anger. My real focus needed to be on giving Jessica the tools or giving her access to opportunities that would make her a competent and independent adult. All parents have concerns about how their children will “be” in the world, and I’ve raised enough children by now to know that there are a lot more factors that go into that equation than just a medical condition. I’m confident that Jessica has the tools to surmount whatever obstacles lie in her future and to be successful, fulfilled, and happy. It’s been my joy and privilege to have had some input in that process.

The International Sacral Agenesis/Caudal Regression Association is a 501(c)(3) organization.

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