Meet Greg Wells, FOXG1 dad to Emma and Alli
MTEAM NEWS & STORYTELLING
10 Minutes With: FOXG1 Super-Dad Greg Wells
With Father’s Day coming up this Sunday, we wanted to know what being a father to children with disabilities really looks and feels like. So we turned to Greg Wells, rock-star dad of two wonderful daughters, Alli and Emma, both with FOXG1. We were touched by his honesty and humility in sharing what fatherhood means in his world. And, after hearing what he had to say, we're pretty sure that Alli and Emma are the luckiest girls in the world to have Greg for a dad!
FOXG1 dad to Emma and Allison, Greg Wells
MTEAM: Greg, tell us a bit about you and your family.
GREG: I am married to Felicia and we live in San Diego, CA. We have 2 daughters, Emma – 17 and Allison – 13, both diagnosed with FOXG1. Felicia is from New Hampshire and I’m from New Mexico and we both came to San Diego for school which is where we met.
MTEAM: Can you tell us a bit about Alli’s and Emma's diagnosis and what that means in a practical sense for your family?
GREG: Both girls are in wheelchairs and non-verbal. They need assistance with virtually all of their daily needs. Emma has a feeding tube and gets all of her nutrition and meds through that. Alli eats by mouth (all of the time) but requires someone to feed her. Daily life is a pretty busy constant stream of transitioning the girls, feeding, medicine, toileting but also luckily reading, goofing off, giggling and snuggling.
MTEAM: Tell us more about Alli’s and Emma’s personalities.
GREG: Emma is a very mellow, laid back young lady. She rolls with the punches and seems to be unfazed by her challenges. She unfortunately has seizures and typically falls asleep after one. She will wake up with a smile on her face as if to say “what else you got?” It is both heartwarming and heartbreaking all in the same moment.
Alli is decidedly not laid back and mellow. She struggles with some significant behavioral issues that have proven to be very challenging. We think she is angry because her body isn’t allowing her to do what she wants it to and she isn’t able to communicate effectively with us what she wants. But she also has, without a doubt, the most infectious giggle and silly personality and can turn on the charm like no other. Although she is now 13, she still loves to snuggle.
MTEAM: What have been some of the biggest challenges that FOXG1 has brought into your life?
GREG: The daily physical challenges and exhaustion of lifting, transferring, feeding, medicines, etc. are a constant struggle. Just the process of getting out of the house to run errands is quite the production. All of these things lead to pretty serious emotional exhaustion as well. Emma’s seizures are one of our biggest, ongoing concerns. It is very difficult to watch that happens to your child and know that you are somewhat helpless while it damages her system.
Emma and Alli were both born with FOXG1 syndrome
MTEAM: Share a memory of one of the times you’ve been especially proud of the girls.
GREG: Throughout both girls’ schooling, they have been given any number of ‘awards’, like ‘great attitude’ or ‘always smiling’ but almost never true learning or schooling based awards. When Alli was in 5th grade she had a teacher that was actively working with her on communication skills and her communication device and received an award for her efforts in improved communication. Alli could not have been prouder of herself when she received it and we could not have been prouder either. With Emma, I’d have to say that despite her issues; FoxG1, seizures, non-verbal, feeding tube, ulcerative colitis, etc., she wakes every morning with a smile and falls asleep every night with a smile. How can you not be proud to have a daughter like that?
Alli wins an award at school for improvements in her communication!
MTEAM: What would you most love for people to know about FOX G1 in general or about your daughters' journey in particular?
GREG: Both our girls bring a bright light into the world. They have taught me empathy, courage and what unconditional love looks like. There are days (and plenty of them) that are filled with feelings of anger, loneliness, resentment, guilt, you name it. However, when one of these young ladies looks at me and smiles and laughs, I am reminded how strong and resilient and genuinely loving they are in spite of everything they are struggling with.
MTEAM: What is a typical day in their life like?
GREG: I guess ‘typical’ is a relative question. I don’t like saying or thinking this, however, a typical day for us is similar to a typical day for a family with a baby or babies. Mornings are a pretty busy combination of waking up (not easy with 17-year-old Emma), getting them dressed, fed and ready for the day. Both girls are basically dependent on us for all daily needs. Both girls attend their neighborhood schools (at least they did pre-Covid) and are in special ed programs. We are lucky to live in San Diego, so weekends and summers offer some great options that are accessible and the girls enjoy, such as the zoo, Balboa Park, aquariums and of course the mall. We basically coordinate our outings around Alli’s meal times because that young lady loves to eat. I guess I can quote a line from the movie Tombstone that sums it up; “There is no normal life, there is just life.” Our days are anything but normal, they are just our life.
MTEAM: We’re living through a strange time in history with the current Covid-19 pandemic. What changes and/or worries has this brought to your life, specifically as a parent? How have you been spending your days?
GREG: The past 3 months have definitely been a pretty dramatic change for us. Both girls are at higher risk for infection, so we have been and will continue to be very cautious about returning to what is our ‘normal’ life. We are worried about what the school system will look like post-pandemic. We are concerned that the special ed program where we live will look very different and will present even more challenges for the girls’ education. We’ve been spending our days at home (not surprisingly), and certainly have had some wonderful time together we wouldn’t normally have. It’s also shown me what I already knew, that my wife is a complete rock star of a mom. She has become the girls’ teacher as well and she is awesome at it. It has also been completely exhausting. It was already difficult for us to leave the house in normal times, so now we are feeling even more shut-in. It can create a sense of isolation and depression that can be overwhelming at times.
MTEAM: What key changes would make this a more inclusive world for your daughters.
GREG: I feel like we live in a day and age with a real lack of empathy for each other. Either the inability (or unwillingness) to try and see the world through someone else’s lens. Try and understand what their world is like and not project opinions when you have real lack of knowledge and understanding of someone’s daily life. One of our on-going and daily battles is schooling. Through the years the girls have had a few great teachers and a number of great one-one aides. However, we’ve also had (and continue to have) staff, teachers, administrators who have no expectations of kids with disabilities. We need school districts to stop treating the disabled community and special education like a program they have to have because it’s required by law. It needs to be treated with the same expectation, care, and resources all kids get in the school system.
MTEAM: What do you love most about being Alli’s and Emma's Dad?
GREG: Being a Dad has brought an entirely different level of love into my life. When these 2 young ladies smile at me, laugh at ridiculous noises I make or dumb jokes I tell, my heart melts. I think (hope) they have taught me a level of empathy and compassion I didn’t know I had. I also love that they bring so much joy into so many other people’s lives. I also get to have quiet, personal moments with each girl that most Dads of teenagers probably don’t get. Whether it’s reading and snuggling with Alli or laying on the floor next to Emma trying to undo the strings she’s knotted around multiple toys while she laughs at me, these are pretty special moments.
The MTeam is a Best Buddies Challenge team of cyclists, runners, and walkers that was established in 2016. It came together out of a desire to raise awareness and funds for the Lewis family who have a daughter, Meredith, or MerBer as her dad calls her. She is the MTeam's Chief Motivating Officer. Her smiles keep the team riding, running, and walking to bring awareness to FOXG1, the rare genetic disorder with which she was born. Our team motto is #MilesForSmiles, because once you are rewarded with one of Mer’s smiles, your heart will be full and you will work that much harder to support the many wonderful people Best Buddies reaches.