Nathaniel’s Journey (We’re just along for the ride)
by Dad - Russel Newman
Nathaniel’s journey, and ours, began in February 2004. It was a journey none of us planned on taking. Needless to say we never could have dreamed where this journey would lead. You see it was last February that Nathaniel was born with Treacher-Collins Syndrome.
As parents, I think we all assume we are the captains of the ship that is our children’s life. Treacher-Collins, and all that comes with it, enables parents to learn sooner than most that this misconception is completely without merit. It enables us to learn that our children are far more qualified to steer this ship than we are. Inner strength, fortitude, love, and a desire to find the joy in all that life
Treacher-Collins has been the centerpiece of Nathaniel’s daily life. What is most amazing is his utter refusal to allow it to be the centerpiece of who he is as a human being. As his journey has ebbed and flowed from hospital to operating room to the Institute of Reconstructive Plastic Surgery (IRPS) and back again, his mother and I have constantly lost our way. How often we thought this was our journey. How often we mistakenly asked, Why us? You see, this is not our journey, it is Nathaniel’s and he has masterfully guided this ship through rocky reef, rough water, and storms of every kind. We are all just along for the ride.
More than 10 surgeries, what seems like hundreds of doctors’ visits, and what I am sure is a fair amount of suffering have not slowed my Captain on his quest. It seems he is on a never ending quest to change the world. Along the way he has picked up passengers at every port. Friends, family and total strangers have gotten on board. All are amazed by his constant smile, his giggle, and his obvious love of life.
To others with Treacher-Collins and the like, why am I telling you this? Please do not allow Treacher-Collins, or the countless other similar conditions, to lead your family on the journey of life. Do not allow the ignorant or misinformed to sadden you. Do not allow the endless hours in hospitals to cast a cloud over you. Most importantly, give up the helm. Your child is the most qualified to steer this ship. Look in their eyes, take heart in their strength, and gain hope from their fortitude. Let them steer. It is their journey!
To our son Nathaniel: You are and will always be our hero. You are and will always be our guide and inspiration. Some day you will find your quest difficult. The passengers you have picked up on the way will be there to help you. Not the least of which are the others we have met at IRPS and through the NFFR. Lean on them as we have leaned on you.
MY CAPTAIN MY CAPTAIN...
WE LOVE YOU SO!
