Before I start my article this month, I want to send a heartfelt thank you to all of my readers who graciously and unexpectedly sent in generous donations to help us at Rising Star Outreach feed and provide medicine to leprosy colonies across India to help get them through the second deadly Covid wave that has decimated the country. Between the Meridian readers and our social media page, enough money was sent in to completely fund the effort! It was unbelievable! It was quite an effort with packets of food & medicine delivered to nearly 50,000 people across ten states of India. Our two leaders drove more than 5,000 miles delivering packets to just the states of Bihar and Odisha. Tens of thousands of people were helped! Who knows how many lives were saved? So, thank you!!
Because Jolanta’s backbone was never supported during all her years of paralysis in Lithuania, without the support of her muscles, the backbone began collapsing. When she arrived from Lithuania at nine years of age, her rib cage was so compressed due to her collapsed spine that she was forced to use her hands to push her upper body upward to make room for her lungs to be able to take in air. To illustrate this point, when I measured her to try to determine a dress size, there were only six inches from her hips to her collar bone, due to the severe scoliosis! This collapsed spine essentially made her nearly a quadriplegic, for all practical purposes, since she did not have the use of her arms for anything other than for breathing. All the essential organs of her body were also compromised due to the reduced blood flow they received by being so compressed. This is why her Lithuanian doctors felt that without surgery she had no chance of surviving.
At her first medical exam after arriving in America, her team of physicians notified us that she would need extensive surgery to correct this. One surgeon commented that in this country, we no longer saw such severe scoliosis. He noted that it would likely take three surgeons operating simultaneously in order to straighten the spine, aligning it between two vertical steel rods.
It was abundantly clear to this team of doctors that there were also severe emotional issues for Jolanta. The doctors agreed that it would be wise to delay the surgery until she could emotionally acclimate herself more to her new family and the move to America.
A full-body removable cast was created to keep her spine as straight as possible. She wore the cast all day but was able to remove it to sleep at night. The best thing about the cast is that it created enough space in her backbone for her lungs to get air without her having to physically lift her ribcage up. Thus, at age nine she got the first use of her hands that she could remember!
Learning about this necessary surgery, John and I were quite concerned about the cost. Jolanta was automatically excluded from our insurance, due to the fact that her condition was pre-existing when she was brought into the family. That meant we’d have to pay for it. It didn’t take a financial genius to figure out that this surgery would cost more than $100,000, an imposing sum for our young family.
At a Family Home evening, we discussed this challenge with our other children. They offered to forego family vacations and all summer and sports camps. They also decided they would not need any new clothes. It seemed like a lot to ask of our children, but they offered the sacrifice without complaining. I remember going to bed that night, humbled and with my heart swollen–almost aching—being so touched by the sweet generosity of our children.
Projected costs continued to rise as the scope of the surgery was planned and the necessary long-term extensive physical therapy was explained. The anxiety created by this was almost unbearable. I wondered if any of our children would be able to even go to college when they graduated. We would be crushingly in debt. I prayed for faith.
Then a literal miracle occurred. I was driving home after dropping Jolanta off at school after another doctor’s visit, when I got a call on my car-phone. It was John. “Are you sitting down?” he asked. “No,” I teased, “as usual, I’m driving the car standing up!” He managed a laugh, then said, “You are not going to believe this . . .but the company insurance has agreed to cover Jolanta as if her condition was not preexisting!” I couldn’t believe my ears. Impossible! He could sense my disbelief so went on to explain that the law firm he worked for had called the insurance carrier and threatened to switch to another provider if they did not cover Jolanta’s surgery costs.
This was incredible! At that point there were probably 150 attorneys at the firm, along with numerous legal secretaries, paralegals, etc. It would have huge loss for the insurance company. For us, this was like manna from heaven! Over the years, the insurance covered several hundreds of thousands of dollars of medical costs for Jolanta through several surgeries, medical crisis, etc. Truly, a tender mercy from God.
Several factors combined to help Jolanta to emerge from her self-imposed mental retreat. The first wonderful thing is that her older sister, Amber, moved back from attending UVU, to her room at home in Atlanta. She planned to transfer to Georgia Perimeter College. I use the word wonderful, even though the transfer came as a result of a suicide attempt Amber made at UVU. This was not her first suicide attempt. She was severely bipolar and had nearly paralyzing difficulty facing any pressure. She felt that she needed to come home to get her feet back on the ground. So why would I use the term wonderful?
It was wonderful in that, back at home, Amber’s room was next to Jolanta’s room. They shared a bathroom. Something magical happened between those two wounded girls. Sensing the need in one another, they connected immediately and became fast friends. Amber was passionately involved in scrapbooking. She was creative and enjoyed finding new and fun ways to express her feelings through scrapbooking. She had entered multiple scrapbooking contests and was excited about her success. She took it as a challenge to bring Jolanta up to speed on scrapbooking techniques.
The two girls would retire to their rooms after dinner and then the scrapbooking would begin! They worked together for hours. Our bedroom was above theirs and one of the happiest sounds we ever heard in our house was the two of them laughing together well until one or even two o-clock in the morning, as they scrapbooked and bounced ideas off each other. Yes, laughing! This was a side of Jolanta we had never seen.
But there was also a beautiful thing happening with Amber. As Jolanta began to heal and participate eagerly with Amber, Amber also began to heal. Before long, Amber was back in college and doing well. Her greatest joy, though, was in helping Jolanta learn how to join in and participate in life. Amber found a bowling alley that had adaptive lanes for handicapped bowlers. They spent many nights together there, along with Jolanta’s brother, Thomas.
Amber, Jolanta and Thomas also frequented CiCi’s Pizza joint, where you could eat all the pizza you wanted for $5.00. While not the greatest pizza in the world, it was definitely within Amber’s budget! They frequently hit the dollar movie together. We had gotten Jolanta some craft projects to do and Amber was more than happy to help her learn how to needlepoint, crochet, or paint. Amber, feeling emotionally stronger, got involved again in the Village Center Playhouse (which was an offshoot of the Hale Center Theater). Thomas and Jolanta were her biggest fans, sitting through show after show.
With her friendship with Amber as her emotional anchor, Jolanta was ready to open up just slightly to others. Jolanta felt emboldened enough to finally get involved in the Atlanta Adaptive Sports program. This was an interesting fit, because Jolanta didn’t seem to have a competitive bone in her body. She wheeled her own wheelchair, but usually slowly, assessing things (perceived threats) along the way. In sports, she was supposed to move fast. For her, that was nearly an impossibility.
The most wonderful thing about the program, though, is that it brought Jolanta together with other kids who, like her, had physical challenges that tended to sideline them from other kids their age. She made some cherished friendships and even began to have normal activities like spend-the-nights, something that would have been unthinkable earlier.
After Jolanta had been participating on the adaptive basketball team for about six months, she informed me that she wanted to invite Robbie to join the team. Robbie was a teenage boy, probably around 17 or 18. He lived two doors up the street. He had severe mental disabilities as well as physical disabilities. Like Jolanta, he was also wheelchair bound. They had moved in very recently, but he and his mother kept to themselves.
I’m embarrassed to say that with all the doctor’s visits (nearly every weekday for six months), along with parenting eight other rambunctious kids, I had not even found time to greet the new family. But Jolanta had noticed that the boy was in a wheelchair.
Together we went up to his house. His mother welcomed us and hesitantly ushered us in to meet Robbie. He was not pleased to see us! He began cussing, calling us all sorts of vulgar names. Robbie’s mother was mortified. Ignoring the verbal barrage, Jolanta wheeled up to his chair and held out her hand. Robbie drew back and then leaned forward as he unleashed a huge wad of spit onto her face!
I instinctively rushed to Jolanta to pull her back. “Are you okay, honey?” She was definitely taken aback for a second, but then this shyly awkward little girl blurted out an invitation to join their basketball team. Robbie sat motionless. Then he burst into a big grin, “Can I, mom? Can I? Huh? Huh? Please! Please! Oh, Please!”
I was completely amazed at Jolanta’s poise! This was the child who earlier wouldn’t even let a toddler approach her without panicking.
Robbie joined the team. But only for two practices. He was totally ecstatic about being on a team. His mother told me, he talked excitedly about it non-stop for days. When he came home after practice, he was so excited that he stayed up all night talking about it! His mother disclosed this when she called to say that he could no longer participate, as it was completely disrupting his (and her) schedule.
But she was also very grateful for the most amazing time of his life. She regretted that she couldn’t keep bringing him. She was handling his care on her own, as well as working full time. I asked if I could bring him, but she was very worried, given that transporting him was so difficult and he was so fragile and could be difficult to deal with. I tried to press her, but she was adamant. The coach later offered to provide transportation, but Robbie’s mom was already at her limit. Reluctantly we acquiesced, but Jolanta often would go up to his house to give him details of the games. This little team had become his passion. I believe she was his only friend.
It was all such an interesting dichotomy. The little girl, who was too shy to speak even to her mother, had broken through the barrier of a boy nine years her senior, verbally abusive, yet dying for friendship.
As Jolanta’s first surgery drew closer, she overheard me talking to the Bishop on the phone one afternoon. He had called to see if we had thought about getting Jolanta baptized, as she was now ten years old. I told the Bishop that, given her lack of English skills and her backward social development, I was not sure she really understood enough about the Gospel to get baptized. He said, he could understand our hesitancy. After I hung up Jolanta turned to me and said, “Mama, don’t you think that it will be helpful for me to have the Gift of the Holy Ghost when I go into my surgery?” That certainly set me straight!! Anyone that had that understanding was definitely ready to get baptized!
Her baptism was a holy occasion for me. She was absolutely beautiful in her white baptismal dress. Her oldest brother, Jay, performed the baptism. He held her tenderly in his arms. After uttering the prayer, he gently lowered her into the water. (Remember, she had an overwhelming fear of water). But in this instance, faith triumphed. She emerged from the water, instead of screaming, as I had feared, she was smiling and radiant. Another miracle!
Jolanta was now ready for her first major surgery. As planned, a team of three doctors operated simultaneously, one in front, one in back, and one from the side. She was suspended in the air so that all could operate at once. It took seemingly forever. Nearly ten hours after surgery started, we were finally alerted that she had been taken to the recovery room. Recovery after such an ordeal was a bit rocky. Though I had warned her several times that she would feel traumatized when she woke up, she was very traumatized. She withdrew back into herself. It took several weeks, but with Amber’s help, she eventually returned to her former social progress. Best of all, with her back straightened, Jolanta grew by about 8 inches!
I was struck by how both Jolanta’s and Amber’s greatest emotional healing came not from the medical field, but from serving one another. While they both had psychologists and counselors to help them, their greatest healing was manifest when they served others. As long as they had each other, hope was definitely in the air!
Unfortunately, at that point, we had no idea of what tragedy lay at our door. . .
I don’t really remember too much about how I was feeling around the time of my surgery. I knew that I needed to have it because my back was so crooked that I was always leaning to my right side and it was affecting my breathing because my organs and lungs were being crushed. I do remember constantly using my arms to lift myself up to breathe. I also remember hating wearing the back brace for those months before the surgery. I do remember feeling a little nervous about having the surgery and I think that’s why I felt like I needed to get baptized, but I think that I didn’t end up getting baptized until after my surgery. After the surgery, I remember feeling a little bit taller and feeling better for having the surgery. I don’t remember withdrawing or feeling depressed afterwards.
I had such a strong connection with Amber. I didn’t know why at the time or understand, but as I’ve gotten older, I completely get why we bonded so strongly. Even though I was a kid when I met her, we had an unspoken understanding of each other as two people who were damaged in our own way. In fact, to this day, I tend to bond more with people who are dealing with traumas or emotional damages of their own and I think it’s because my first bond with someone like that was Amber. Those people are the most real to me because I understand them and they understand me in a way that other people don’t, even though we may have different disabilities.
I have her to thank for helping me connect with those people. She became a best friend. I adored her and loved spending time with her. She was one of the few people that welcomed us with open arms when my brother and I first came to the U.S. She was always trying to get me out and trying to get me to do things with her. As a kid, I didn’t know that she even had bipolar disorder or that she struggled with anything because I never saw that. I didn’t find out until way later that she struggled with a disease that she couldn’t control. She was one of the best people that I knew and the strongest. I was grateful to have her in my life. Then the day came that completely shattered my world.
To be continued . . .