By Holley Moseley
The holidays are a time to celebrate, relax, and make special memories. But for families with a medically-fragile child or children, there’s little time left for fire gazing, gift wrapping, or attending parties or school plays.
Why? Because special needs kids need constant care and attention, and the arrival of the holidays doesn’t change that. This is why one of the best ways you can commemorate the season of giving, is by becoming a “holiday helper” to families, who may desperately need a hand.
The holiday season can be an exhausting and overwhelming time for families with a medically-fragile child. 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. They have almost no extra time to make this time of year special. Often, the holidays pass in a blur and are over before they ever began.
If you know a family in this situation, the greatest gift you could offer is your time and support.
Families probably won’t ask for it, but that doesn’t mean they don’t need it. 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.
My 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, my husband and I 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. A small gesture of caring can go a long way to help a family find the balance they need, during such a hectic time of year.
If you’re inspired to support a family with a special needs child during the holidays, here are some ways to be a holiday helper.
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 assistance of any kind will always be appreciated. You may be asked to pick up a few stocking stuffers for the kids, drive a child to their physical therapy appointment, help repair a broken garage door, or rake up the last of the fall leaves from the yard. 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. 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 holiday meal can make all the difference to a rushed and frazzled family. Therefore, when you prepare your own holiday dinner, 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!
Families with a medically fragile child are busy, but they still want to be invited to attend neighborhood potlucks, holiday parties, caroling, and other seasonal outings. 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.
Treat parents to a night out (for a date, or holiday 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 holiday concert or movie in advance.
Parents also need kid-free time to shop for holiday gifts. During the holidays RayAnn was always with me, even when I was shopping for her presents. Luckily my mother could sometimes step in and watch her so I could run some shopping 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 grab some gifts or stocking stuffers or wrap presents.
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 take them shopping for holiday presents for Mom and Dad. (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!)
Brighten up the hospital room
If a child can’t be home for the holidays due to hospitalization, you can help make their hospital room merry and bright—and it’s one less thing the parents have to worry about. Schedule a time to meet the family there for a visit and bring a mini tree or light-up menorah, a string of colored lights, festive wall hangings, tinsel, stockings, and instant hot cocoa. In no time at all, the room—and your own heart—will feel warm and cozy.
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. 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.
Your selfless gift helps families find that elusive balance that makes their holidays merry and bright. 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.