Soldiering On: How One Family is Making it Day-to-Day

“They call me Nonni,” she said, gazing fondly at the two boys playing in the living room. “And sometimes they call me mommy because really they are like my fourth and fifth children.”

Sonya is a single mother, raising her two grandsons, Rylee, 5, and Aiden, 3. She has had custody of both boys for the majority of their young lives. Both boys have developmental and behavioral challenges as a result of the choices their birth mother made while pregnant. Of the two, Aiden’s complications are more severe. “We still deal with outbursts from him that can be quite dramatic, and damaging,” said Sonya. At one point, Aiden’s tantrums took a self-destructive turn. “He started bashing his head, biting himself, bruising himself. He would find a corner of the bed, the floor, anything. He went over the top in a second, and he just didn’t know how to bring himself out of it.”

Aiden and Rylee have been through rounds of appointments with specialists, everything from speech therapy, and occupational therapy, to visits with a gastroenterologist. “I knew when we left the hospital that there was something wrong with Aiden. He was allergic to the protein in milk, severely allergic,” Sonya shuttered. “He had to be on a special formula, and it was $40 per can.” Both boys must maintain soy-free, dairy-free, and gluten-free diets. “Joy to the world, it’s very expensive,” Sonya chuckled. “But it has made a world of difference. Neither of the boys has suffered from the chronic illnesses they had before.”

In 2016 Sonya was the recipient of a respite grant of $660, allowing her to hire someone to care for the boys up to two days a week. “I didn’t feel like I was trying to do this all by myself, all the time. Or like I was wearing out the one friend I have,” she said tearfully.  The grant allowed Sonya 60 hours of respite care. “Just knowing that I had her here so that I could sleep if I needed to, or get something organized, or so I could go down the street and have a cup of tea with my friend,” she said. “Or even just to go to the grocery store! I mean, when you have to leave the grocery store with your stuff still in the basket because your child can no longer deal, and he’s screaming so loud that people are literally covering their ears, and vacating the space, or staring at you. For the courtesy of those around me and the wellbeing of my child, I need to leave my cart and walk out. And that means I won’t get those groceries because he won’t be okay in an hour. We’re done.  I have to pick another day to go back. And now that they have so many dietary restrictions, I have to keep those things in the house.”

For the respite care, Sonya had to lay out the initial funds and was reimbursed. “It was tricky,” she said. “I had to find someone who was willing to work with me now, and be paid later.” It took her the better part of a year to find a helper willing to work with those terms. Her grant almost expired.  Because of the initial outlay of money, Sonya didn’t apply for a second round of the grant that, in her words, ‘saved her life.’ “It let me step back, and gave me a breath of life. I was so exhausted. But I didn’t fill it out, because I didn’t have the budget, and I didn’t have my helper anymore either – she went off to school. I knew I didn’t have the money upfront.”

Sonya has been in three major car accidents since 2007 and is on disability herself. She has been unable to work due to both her health and the level of care her grandsons need. Though her family was able to receive crisis intervention services for a short period of time, their case is closing soon. “I spoke to my case-worker, and they’re pretty much ready to cut me loose. To them, we’re not in crisis mode. I hear ‘No, no, you’re still living indoors, so you’re good’. I’m managing it. And that’s a double-edged sword. Because you can manage it, you don’t get help. If you can’t manage it, your family will suffer. And I’m just not going to give up. I can’t.”

As a result, the family is quickly depleting Sonya’s savings and investments. “I feel like at this point I’m just going to run out of my resources. And then what? I don’t know. I keep saying, ‘I could really use some help, I’m draining my resources’. And the answer always was, ‘well you have them to drain.’ But in six months when they’re gone, what do I do then?” Closing her eyes, she said, “We take it a day at a time because when I look too far ahead I get overwhelmed.”

Rylee started Kindergarten this fall, and Sonya is like any excited mother. “I want him to love learning, and feel comfortable, and competent,” she said. “I think he might be a marine biologist, and Aiden might be an inventor or something like that. I expect great things because they have great potential.” Sonya is hoping to work with the school system to help them see Rylee’s potential. “He qualifies for free lunches, but because of his diet needs, I don’t even know if that’s possible,” she said. “It would be a huge financial help if that did go through.”

Despite the physical and financial challenges her family faces, Sonya sits up straight. “We soldier on, that’s what we do. I have two boys, and they’re very different. They’re 3 and they’re 5, and they don’t have the world figured out yet. And that’s okay, they don’t have to,” she said. “That’s my job.”