I have known Brittany Hayes for more than ten years and what has always struck me about her is that she is unbelievably resilient. The past few years have found her calling on that resiliency and determination more than ever.
In 2014, she gave birth to her second son, Eli. Throughout his first few months of life, it became apparent that something was not right — he had trouble eating, had sleeping issues that extended beyond what normal infants experience, and began falling off the standard growth chart.
His entire first year was filled with doctors appointments until, at 15 months, he was diagnosed with Smith–Lemli–Opitz syndrome (SLOS) — a rare genetic disorder marked by the inability to properly process cholesterol.
By this time, Brittany was pregnant with her third child, Amelia, who would also be born with the syndrome. With three kids under five, two of whom are medically fragile, she has embarked on a different version of motherhood than she first envisioned. Below, she gives us some insight into her life now and how to support friends you may know in a similar situation:
What are your biggest day-to-day challenges?
“Our day-to-day life really fluctuates. We are more or less held captive by Eli’s mood for the day. Having sensory issues and a major speech delay, Eli gets extremely frustrated and anxious when he’s not able to communicate his feelings, wants or needs. Eli has also had a G-tube for over two years now and you are really tied to that schedule and it sometimes makes it hard to do things with the other kids.
“My oldest son, Noah, is typical and I have to be aware of consistently giving him the attention he needs. The multiple therapies a week can be hard for him, so my husband and I try to carve out time every week to do something special.”
In those early days of finding out that something was wrong with Eli, and then Amelia, what were friends and family saying that you found most comforting?
“My biggest sadness was for the future of my children. If you read about the syndrome, it seems bleak and not very optimistic. I was once told by a family member that NO child’s future is a given. Just because my children have a label slapped on them, doesn’t mean that their future is set.
“I have readjusted my expectations, and with the support of wonderful family and friends, am striving for them to have the most normal and happy life possible.”
A lot of times, people on the sidelines feel really helpless or don’t want to intrude but want to do something. How can they show they care in the most meaningful way?
“Honestly there is not a whole lot that people can say to make it any easier. Actions are what count. Showing up with coffee and trashy magazines while your daughter is hospitalized at 10 days old. Listening while you complain about the 10th tantrum your son has thrown that day. Presence. That’s what we need most. Having special needs children is hard enough on its own, but having friends that don’t disappear on you is priceless.”
Has anyone said anything with good intentions that left you shaking your head? What shouldn’t people say?
“I’ve had a few people tell me that they look so normal. That’s a hard one. They do look like your typical 3 and 1.5 year-old. That doesn’t make their syndrome any less real or their challenges any more easy.”
What do you wish people knew about your situation, particularly, experiencing motherhood differently than you anticipated?
“Compassion goes a long way. Motherhood is hard enough as is. Having people whisper that your son’s feeding tube is gross is thoughtless and unnecessarily mean. We are all doing the best we can with the cards we’ve been dealt.
“That doesn’t change even with having special needs kiddos. There are a lot of issues my children have that are not visible to the eye. That doesn’t mean they are any less real. Be kind. Be patient. Show love.”
Originally posted to © CharlotteFive