Our little unicorn
I’m a mom of four and my sweet Olive is our rainbow baby and our little LGS warrior, who is now four years old.
She was a healthy newborn who underwent cardiac arrest at three months old and had anoxic encephalopathy. I remember the trip to the ER that day, with a “code blue” and doctors and nurses rushing in to save her. Along the way, she was also diagnosed with infantile spasms (IS), focal seizures, cerebral palsy, cortical visual impairment (CVI), and hearing impairment, along with other diagnoses. All of this is happening as a full-time working mom with a 5, 4, and 3-year-old at home.
There were so many things to juggle at that time but my faith kept me going and we had so much love and support from family, friends, and community as well as a great medical team. I eventually left my career to care for Olive and her siblings and have not looked back. It’s been a hard and rewarding journey fighting this fight with her and educating those around us. She may be nonverbal, gtube-dependent, quadriplegic/cerebral palsy-wheelchair dependent, and developmentally delayed but she is our unicorn. It wasn’t until recently that Olive was diagnosed with LGS. It took a while to really figure out what was going on with her with all that she’s gone through. Her siblings (now 9, 8, and 7 years old) love and adore her. They are little advocates in the making, educating their friends, teachers, family, and others about their baby sister. These are siblings that know how to feed their sister via a feeding pump, wheel her around in her wheelchair or wagon, help her bathe/dress and make her smile and admire her strengths!
My advice for a newly diagnosed family:
We live in a world that likes to define things such as what is “normal.” However, the truth is we all have our own normal or “new normal” and we should embrace that. My family and I have learned so much in these past few years and have tapped into an inner strength that we never even knew we had. Celebrate the little things and reach out because you are not alone.
Interested in sharing your story?
At the LGS Foundation, we want to hear your stories! We believe that your story will help others to understand what living with LGS is like and the effects it has on your family.
Written August 10, 2022