Most special needs parents know the well-known poem “Welcome to Holland” by Emily Perl Kingsley. For those unfamiliar, it’s a poem describing the experience of raising a child with a disability. You plan an extravagant trip to Italy, including buying guidebooks and making all the magnificent plans, only to find out you are going to Holland—a different place.
An unexpected destination means you must make different plans and buy new guidebooks. Oh my, you have to learn a new language. There are unfamiliar people here. It’s really different than Italy, but as time passes, you catch your breath. Windmills, tulips, and stunning Rembrandt flowers appear as you look around.
Although, you still had friends that made it to Italy, and they brag about their lovely time for the rest of your life. You will always say, “I was supposed to go there.” And that agony won’t go away because the absence of that dream can be a real loss. But, if you choose to spend your time grieving that trip to Italy, you may never be able to enjoy the wonderful things about Holland.
My husband Axel and I had a typical military relationship, I guess you could say. We fell in love young and quickly; before you knew it, he deployed for his second tour to Afghanistan. When he came home, we married and started our forever together. We lived in Jacksonville, North Carolina, where we welcomed our oldest son, Ace (named Achilles, like the warrior, thanks to losing a bet with a bunch of Marines), who was born at Camp Lejeune, North Carolina. After Axel’s enlistment had ended, we moved to Iowa to be close to family while raising our son.
Pregnancy with our second son, Gunner, was considered “normal”—normal aches and pains and feeling like a whale. As far as Axel and I could tell, there is no history of an eye condition on either side of our family. We were looking forward to our “trip to Italy” (referencing the “Welcome to Holland” poem by Emily Perl Kingsley) and becoming a family of four. Gunner was born, and all I can remember is holding him and telling him about our family while looking into his beautiful eyes and smiling at his sweet little chin.
After a few days, Axel and I noticed Gunner’s eyes wouldn’t stay still (nystagmus), and we brought it up to our pediatrician at his two-week check-up. The pediatrician told us not to worry but referred us to a specialist to ease my mind. We saw our first specialist at four weeks old, who told us it was more serious than anyone thought and that we needed to see a second specialist. A retina specialist saw him at The University of Iowa Hospital when he was four months old.
After running some tests, our results were clear. He was blind. Gunner was officially diagnosed with Leber’s Congenital Amaurosis. Suddenly, our trip to Italy turned into a trip to Holland (referencing the “Welcome to Holland” poem by Emily Perl Kingsley), and my world went blank. How do I begin to process this news? Where do I begin? Who do I even contact? How do I start learning braille? Am I going to be able to be a good mom to him? All the questions ran through my mind and didn’t stop. At six months old, we learned his gene was CEP290.
My hands were full. I was trying to balance life as a family of four, keeping up with Ace, a toddler then, and starting Gunner’s Early Intervention services. Our team was great! We had an O&M, TVI, PT, and OT. Our schedule was full and constantly busy with therapy appointments. (Still, to this day, I firmly believe this team gave Gunner a strong foundation for his cane and braille skills he uses daily).
One place where I found much advice and help was from Facebook groups for parents of children who are blind or low vision. It saved me when I needed strength and guidance for navigating IEP and school questions. It helped when the parents of older children commented and gave me things to look forward to as he got older.
Gunner was growing, and we were learning more about him every day. He hated loud noises and grass. He didn’t sleep much during his first two and a half years, which was rough, but we got through it. He loved musical toys, swinging, playing with Ace, soft blankets, and stuffed puppies. Oh, and he could’ve lived in footie pajamas if we would’ve let him.
I was learning braille as he was learning braille, so I could braille books for him and make braille labels. I was a part of my local ADA board to learn more about Gunner’s rights as an individual as he got older. Overall, I tried to learn as much as I could. I learned what resources were out there for us—where to get books, where to learn braille (hadley.edu if any parents were wondering), what toys were good to get, how we talked to family members about Gunner’s diagnosis, and so much more.
As Gunner was growing up and entering preschool, Axel and I decided to move to Nashville, Tennessee, where we reside today, to be around more family and for Gunner to attend the Tennessee School for the Blind.
Ace loves being close to family and is currently in 5th grade. Gunner enjoys going to school with friends and is in 3rd grade. He likes to ride his bike and scooter, play with Ace, listen to audiobooks, talk to his Alexa, and paint.
What once was a chaotic time in life has now begun to settle. We’re enjoying our trip to Holland very much. It’s been so much fun watching the boys learn and grow together. I know there will be times when that overwhelming panic will happen again, but for now, it’s calm. I like to say I have “the best of both worlds” with one sighted child and one visually impaired child. Axel and I have one simple goal for Gunner as he ages – to be happy in whatever he chooses. Simple, yes, but it is truly our hope and goal for him.