Families with a medically fragile child or children face a unique set of challenges. In addition to their regular responsibilities, parents and even siblings are consumed with ensuring that the child’s needs are met. It can be an exhausting and relentless journey, says special needs parent Holley Moseley. That’s why if you know of a family with a medically fragile child, the greatest gift you could offer them is a helping hand.
“Raising a chronically ill child is one of those things families often can’t do alone,” says Moseley, author of A Ray of Hope: A Mother’s Story of Love, Healing, and the Miracle of Medical Marijuana (Hope Grows Publishing, 2018, ISBN: 978-0-692-13847-2, $14.95). “Between work, rushing their child or children to school or doctor’s visits, and the demands of everyday life, parents’ lives are filled to the max. It takes a whole village of helpers to step in and help make it work. Luckily, a little help from friends, neighbors, other parents, and extended family members makes a real difference.”
Become a Harlem insider - Sign-Up for our Weekly Newsletter!
If you know a family in this situation, the greatest gift you could offer is your time and support, says Moseley. Even small gestures help lighten the load and energize weary parents.
“Families probably won’t ask for it, but that doesn’t mean they don’t need it,” says Moseley. “And for a medically fragile child going through the struggle of their life, anything you can do to brighten his or her day is absolutely worth doing.”
Moseley’s daughter RayAnn is one such child. Now a thriving teenager, RayAnn spent many years severely ill and hovering near death. After being diagnosed with cerebral palsy and epilepsy since birth, she began experiencing a drastic increase in her seizure activity and was hospitalized many times with status epilepticus—when seizures follow one another without recovery of consciousness in between. After many years of trying every possible treatment, Moseley and her husband discovered “Charlotte’s Web,” an oil produced from a high-CBD/low-THC cannabis plant. The CBD-rich oil significantly reduced and eventually eliminated the seizures and allowed RayAnn to start making huge strides in her health and happiness.
“During RayAnn’s most difficult years, I was always so grateful for help from others,” observes Moseley. “A small gesture of caring can go a long way to help a family find the balance they need to keep going through hectic periods.”
If you’re inspired to support a family in your life with a special needs child, here are some ways to lend a helping hand.
Ask, “How can I help?” The simple act of reaching out and asking, “What can I do?” or, “What do you need?” is meaningful in itself—especially since people may feel uncomfortable or unsure of what to say around families with special needs children. Showing up and offering the assistance of any kind will always be appreciated. You may be asked to pick up a few groceries, drive a child to their physical therapy appointment, help repair a broken garage door, or wash some dishes. These are small kindnesses, but they lighten the load for stressed-out and worn-out parents.
“This is one easy way to make a difference to a family that might be struggling under the load of responsibilities they face each day,” says Moseley. “By offering, you are making it clear that you are their ally. And if you catch them off guard with your offer, let them know that they can think about it for a few days and that you will check back in to ask again. Then, be sure to follow up.”
Deliver a meal. A hot meal can make all the difference to a rushed and frazzled family. Choose a time when you will already be preparing a meal and make extra amounts of each dish. Package it all up along with a bottle of sparkling cider and deliver it to the family’s home. In fact, it doesn’t even need to be homemade to be special and very appreciated; a bucket of chicken and a few sides from a restaurant or grocery store is always a big hit as well!
Include them. “Families with a medically fragile child are busy, but they still want to be invited to attend neighborhood potlucks, parties, and other events,” says Moseley. “Keep inviting them to things. They will miss events when they need to but will attend others and always welcome the chance to have fun and socialize.
“Be sure to include the child as well,” she adds. “Children with disabilities or medical conditions still want to be invited to parties and on playdates. They need friends and a social life.”
Treat parents to a night out (for a date, or grocery shopping, or anything else!). Having a child with special needs can place strain on a marriage (about 22 percent of parents of kids with disabilities divorce), and parents need to make time to nurture the relationship. Volunteer to come by and babysit all the children in the household so parents can have a long-overdue evening to themselves. Gather up your own kids too, and head over with some kid-friendly movies, board games, and ingredients for homemade cookies or s’mores. Be sure to offer up this very generous gift ASAP so parents can get dinner reservations or order tickets to a concert or movie in advance.
“Parents also need kid-free time to shop for groceries and take care of other necessities,” adds Moseley. “Luckily my mother could sometimes step in and watch RayAnn so I could run some errands, but not every family has this resource. Offering to pick up the kids from school and entertain them for a few hours gives parents time to get things done.”
Don’t forget about siblings. Caring for a differently-abled child can be a full-time job for the whole family, and despite everyone’s best efforts, siblings may sometimes feel neglected, jealous of the attention their brother or sister receives, or resentful that they must help out in their daily care. So, volunteer to take the siblings out on a special “kids date.” You can take them to a museum or aquarium, or go ice skating, or go see a movie together. (A siblings outing may be best in situations when the medically fragile child is occupied with other activities. Work with the parents to ensure that they do not feel excluded!)
“It takes real courage to reach out and offer help to special needs parents—especially if you’re unsure of how the parents will react to your offer,” says Moseley. “You may worry that you’re intruding or crossing an inappropriate boundary, but this is usually not the case. Push past the momentary discomfort and let a family know you see them and that you would love to help. This selfless gift can help a family achieve the elusive balance that allows them to reach new milestones and raise a thriving child. And that is a gift worth giving, every time.”
Holley Moseley is the author of A Ray of Hope: A Mother’s Story of Love, Healing, and the Miracle of Medical Marijuana. A University of South Alabama graduate, she has over 14 years of nursing experience, specializing in pediatrics and clinical research. She worked as the executive director for the Epilepsy Society of Northwest Florida and continues to be a dedicated advocate for epilepsy awareness. Holley was instrumental in passing the first cannabis legislation in the state of Florida, known as the Compassionate Medical Cannabis Act of 2014. She lives with her husband and three children in Gulf Breeze, Florida.
A Ray of Hope: A Mother’s Story of Love, Healing, and the Miracle of Medical Marijuana (Hope Grows Publishing, 2018, ISBN: 978-0-692-13847-2, $14.95) is available from Amazon and www.arayofhopebook.com.