Why We’re Dreaming Big for the ‘Small’ Victories for Our Children
When I was first learning the guitar, I remember feeling frustrated when I wasn’t able to play certain chords right away. My fingers weren’t exactly cooperating, and it would take a lot of time, practice and hand aerobics to finally land these chords and string them together into something resembling a song.
It’s funny, then, that years later, I would witness my young son endure similar frustrations with simple gestures and movements day in and day out. To be clear, Theo’s challenges aren’t with guitar strings or anything quite so intricate. Because of Angelman syndrome, a rare neuro-genetic disorder, he struggles with accomplishing the most meager of actions – turning a doorknob, creating a steady pointer finger, grabbing a zipper or using a fork to spear food. A few of these things he still cannot do gracefully, but Theo shows determination when he wants to, and seems pleased as punch when he is finally successful. Lately, and much to his amusement and my chagrin, there have been a lot of open doors around the house.
Despite these small moments of success, Angelman syndrome has literally hijacked my son’s ability to be a carefree, independent child. Though his curiosity is on par with that of any typical 5-year-old, he cannot navigate uneven surfaces very well or communicate using his voice. And that’s just the start. This diagnosis has given my soulful, beautiful child a high and daunting hurdle at every turn, and has presented a lifetime full of mountains for this young kid to move. I think it’s fairly accurate to report that life with Angelman syndrome, for the children and their families, is on par to scaling Everest twice a day. Backwards.
I’ve a few dear girlfriends who echo these sentiments. Like me, they are also mothers to children with Angelman syndrome and have chosen to live and raise their exceptional children in and around New York City. Collectively, we are beyond fatigued. Climbing those mountains alongside our sons and daughters takes everything out of us, and even when there’s nothing left to give, we have no choice but to keep going. Somehow, we learn to persevere through the most difficult of times and emotions and often check in with one another by sharing group text messages about the realities of life with Angelman syndrome. One thing our little village has realized repeatedly over time: our children don’t give up, so why should we?
Yet, what we all wouldn’t give for a breakthrough that would help our children possess stronger and more intentional motor skills. Though a potential cure is set to happen in our lifetime, we pine at this very moment for improvements, however small, that would help our children in their ability to communicate and to thrive.
I would cry tears of joy, for example, if Theo could dress himself. Having a 5-year-old that could slip on a pair of pants or change his own shirt should not be a lofty dream that’s out of reach. But for me, it would be an incredible time-saver, a game-changer, and a proud moment that I would relish every single day.
My friend Nicole has a son, Ryder, age 6, who cannot take off his shoes or wash his hands without help. ““He still struggles with gross motor and fine motor skills,” Nicole shared. Over a recent morning coffee, Nicole and I dreamed of a day when our sons could unlock an iPhone and dial our numbers if they ever needed to reach us.
“Finger isolation and finger control would be amazing for our daughter, Sydney,” shared another NYC mom, Robyn, of her daughter who is 6. “So when people ask her how old she is she can tell them by holding up her fingers. So many kids do that and it would be great if she could communicate the same way.”
Allyson’s daughter Quincy, age 4, also has Angelman syndrome and struggles with balance. “For Quincy, if she could independently stand up if she falls. If she could walk up and down the stairs at school and be in line with the other kids… All of those things would be such a huge change for her.”
Of course, walking and standing aren’t the only things we want for our children. We also want them to experience the fun of childhood to the fullest capacity: steadily holding and licking an ice cream cone before it melts, playing a video game alongside their peers, or cutting their food with a knife and fork.
“I think my Milo would be so happy strumming a guitar or hitting some drums really loud,” said Brooklyn mom Sasha of her son, who is 3.
Some of our children can’t use straws or pull up their socks if they start to slip. While these might seem like minor things to many, in our world they are skills that can take years to learn.
We love and cherish our kids regardless of their abilities, but we’re also striving for a higher quality of life for them – anything that can make their lives easier. They deserve that. “Small improvements to motor skills can have a big impact for people living with Angelman syndrome and their families,” said Allyson. Thankfully, these small improvements are on their way to becoming a reality due to a number of Angelman-specific therapeutics that are currently in the pipeline and on the way to our children. We wait with hope.
Only time will tell if Milo will bang that drum, Ryder will put on his shoes, Sydney will share how old she is using only her hands, or Quincy will stay in line with the other kids at school. Only time will tell if Theo will ever be able to pick out and put on his own shirt. And when that day comes, I’ll be ready — guitar in hand — playing all the chords I know, singing my favorite songs and rocking out with pure joy.