Valarie finds support through close family and friends. When Cale was admitted into residential placement, it took her a year and a half to even talk about it with her small circle of girlfriends, and even then she used humor to survive. “I find a lot of casual friends try to tell you how to be a parent or that what you’re doing is wrong. Most of them are clueless, and it’s more frustrating than it’s worth,” she says. “I surround myself with the people who know my story and don’t ask a bunch of questions. Those are the people that I need around me.”
Cale’s transition home was slow, and he struggled at first. But in recent months, Valarie has had reason to be hopeful. Health-wise he is stable, and he has been on a good medication regimen. Her son is in a special education program and just got a work-study spot at a local store, stocking shelves with a work coach. “They said he would never hold a job,” beams Valarie. “The fact that he has to wear dress pants and sneakers is huge!”
The Ablondi family, left to right, Amelia, Ava, Rachel, Dave, Jenna, Andrew at Lake Winnipesaukee
Courtesy Ablondi family
“I’ll never feel that I haven’t done as much as I can, and that’s what’s important to me,” Valarie says. “As caregivers, we often feel that we aren’t strong enough. I want to remind caregivers that there is strength in love. This strength is still present in our hard times, sadness, fears, joy and in our heartaches. The love that I feel for my son is overwhelming, and that makes me a powerful caregiver.”
Adjust your expectations and outlook
From the moment of her son’s birth, Rachel Ablondi, 52, from Mount Airy, Maryland, knew that something was wrong with Andrew, now 23. Although he was born full term, he had an undiagnosed brain bleed at birth and spent 14 days in the NICU. At a year, he began having infantile spasms, which led to brain damage, and he was finally diagnosed with Lennox-Gastaut syndrome, experiencing daily seizures.
Andrew has never met any developmental milestones; he has never sat up or walked. He has visual impairment, is nonverbal and is in a wheelchair, and yet from Rachel’s tone and clear recitation of her son’s limitations, you know that Andrew’s cerebral palsy has met its match.
“As a new mom, I didn’t know anything. The doctor and therapy appointments were constant,” she says. “We crisscrossed the country trying to get opinions, answers, and to figure out how to get him services.”
As the years passed, the Ablondis had three more kids, now 19, 17 and 13. “Our goal was to keep the family as normal as possible,” Rachel says. “This is the only family life we have ever known, and [the kids] have adapted to their special-needs brother.”
She eventually accepted that “Andrew was just going to be Andrew.” He would never walk, and he would have a seizure every day. “You have to adjust your brain and your outlook,” says Rachel. “I don’t spend all my time going to the doctor or fighting for this or that. It’s all about living a life. I just want him happy, healthy and comfortable; I’m not going to beat myself up over it anymore.”
Grab ‘snatches’ of time for activities that bring joy
Rachel is thankful that Andrew travels well, and they can all go out in the community and do things together. He attends a day program and was able to go to school till he was 21. She calls her acceptance a mindset change that, as she ages, comes as a bit of a relief.
Caregiving Advice From the Front Lines
- This is a round-the-clock, life-long commitment. Find activities so you can keep a sense of yourself. It could be running, meditating or just going outside in the yard.
- Connect with parents going through similar journeys. That support and familiarity builds a strong community.
- Life goes fast. Take focused time with your other children and your marriage.
- If you are able, plan ahead. Establish some kind of trust or savings to help provide for your child when you are gone.
- Sign up for any extra services in your community, state or federal as early as possible. Your child may not need them until later, but there are often long waiting lists.
- You know your child best. If it feels like you are spinning your wheels at appointments or with doctors, ask yourself, “What are we gaining here?"
“I’m so fortunate to have a husband who is here with me, but it’s certainly not what I imagined when we got married,” she reflects. “I didn’t picture myself driving a wheelchair-accessible van.”
One of her secrets to staying content is that she and her husband, Dave, 54, give one another time to take breaks. She goes away for weekends with girlfriends; he likes to fish. “One person needs a total 180-degree scenery change, and for the other, it’s nice to have one-on-one time with each kid.”
“I can’t focus on caregiving 100 percent, or I’d go crazy!” she laughs. “I try to focus on other things, like volunteering, my other kids’ activities, exercising, cooking and thrift shopping in small snatches. I also find comfort in completing tasks that I can start and finish, like housework, because it has a stop and start, unlike my son’s care.”