Life with Angelman Syndrome is _____________.
As part of the Angelman Community, we were sent the task of printing the paper (in the photo above), filling it out, and sharing it on social media on February 15th for International Angelman day. A day set aside to support those who have AS by bringing awareness to the Neuro-genetic Syndrome.
For three weeks, I sat and considered how to concisely and appropriately complete this sentence. I tried to decide how I could best describe a major part of our lives in the most accurate way possible. How to express the pleasure we experience but at the same time, to give equal acknowledgement to the mounting challenges we face on a daily basis. I came to the conclusion that it is far from easy to narrow it down to a single word – or phrase, even.
Life with AS is a divine blessing.
Life with AS is supremely challenging.
Life with AS forces intention and planning.
Life with AS is scary.
Life with AS is always shifting.
Life with AS is an opportunity for growth.
Life with AS is being a teacher all day, every day, even at 2am.
Life with AS forces patience, even at 2am.
Life with AS is isolating.
Life with AS is connecting.
Life with AS creates the most delicately beautiful opportunity for humility.
Life with AS has taught me the importance of time. I am still an amateur in terms of budgeting my time, but am slowly learning the art of narrowing down the people with whom to spend my time with, that matter most. It became apparent to both Matt and me following Noah’s diagnosis who the people were that were capable of stepping up to the challenge of treading this path alongside us – and those same individuals are still by our side today. The people who know the intimate details of our daily lives and the struggles we face, but more importantly, have a deeply meaningful relationship with Noah. They have ignored the fact that a thousand miles separate us, but make it a priority to be a real part of his life. Getting to know Noah may appear an easy feat, but he’s quite selective in where he spends his energy as well.
For me, the biggest challenge I have faced in a life with AS is the isolation that care-giving for a child with special needs can create. When Noah was first diagnosed we were living in an unfamiliar city of close to 1 million people. My friends were Noah’s therapists, teachers, and doctors. Now, each of these individuals were incredible in their own special ways, but I needed a peer – a friend (although, in all honesty, I really just needed my family). Since moving to South Bend, I have gradually allowed myself to open up to building meaningful relationships, specifically with two cherished women. While neither has a child with special needs, they have shepherded me along as we navigate child-rearing side by side, whether we talk nursing schedules, kid friendly meals, or our greatest latest find! Not to mention, both of these women have a passion outside of mom duties, wife duties, and the day to day life responsibilities. It’s easy to get caught up in parenting duties regardless of special needs or not– but these friends challenge me to pursue my interests as well.
My friendships keep me tied to something meaningful (and reality, which is vital) when I feel lost within the challenges. Their inclusive nature has created an exclusive togetherness when we gather.
Life with AS will undoubtedly always be dynamic, but I’m thankful that I have the support of loved ones who provide me with the stamina to be up for the challenge.
I can’t think of a better time than to give a special recognition to the ones in our lives who make Noah’s life (and ours) even more beautiful by their devotion, love, and generosity of time (travel, etc). My dad, mom, brother and sisters have surpassed any expectation I had of them– they acknowledge the challenges we face and take them on as their own. Your support is everything. Also, to my dear friends Britt and Amelia, your friendships keep me motivated,joyful and leveled out. Lastly, my biggest support partner, Matt – who routinely molds his life and job to carry the frequent over-time workload.
I’m thankful that I get to raise Noah. Never has a struggle been more rewarding. I love you, Noah Dash.