I’m convinced this will be a year of reflection for our family — as we’ve witnessed so many transitions in the past year I find myself deep in thought. As I reflect, I’m full of appreciation for the journey we’re on. I’m full of gratitude for so many of the people who have helped us along the way — especially the amazing doctors who have become like family. This past week I’ve found myself thinking more about one of the most influential doctors in our family’s life — Chance’s neurosurgeon.
Today we visited her office — for a routine appointment to make sure we are staying proactive in monitoring his spina bifida and hydrocephalus. It hit me today — that this is the first time ever we’ve went an entire year without needing to see his neurosurgeon in the hospital or for an appointment. A year! As much as we’ve missed her — we all agreed that it’s a great sign that Chance is doing so well.
As we arrived at Chance’s appointment, we admired his baby and toddler pictures on the wall as he walked confidently around her lobby waiting to go back for his appointment. If only I could have seen this moment 6 ½ years ago when we first received the diagnosis.
When we we first learned of Chance’s diagnosis about midway through our pregnancy we were in shock — we were given outdated information and flooded with tons of big medical jargon and a long list of challenges that our child may face in his lifetime. We were handed a card to a neurosurgeon to consult with, and we waited for a week or more before ever calling to schedule an appointment because we were in complete shock and frightened. With all of the challenges, we learned he might be born with we began to wonder how we couldn’t give up — because we never wanted our child to have to endure the adversity we were told he might face.
We spent about three weeks researching and reading and learning as much as we could about spina bifida before we met with his neurosurgeon. We were told by everyone that a pediatric neurosurgeon would be the best doctor to give us a better understanding of how severe our son’s condition would be. We knew he would be born with the most severe form of spina bifida — but we needed a doctor to help us understand just how severe things might be.
We went to that appointment with my book full of thoughts of reasons we were ready to give up and reasons we didn’t want to give up — and let her know how our hearts felt. Before I could even open the book filled with my thoughts — she helped us think less about what was “wrong” and more about what we could do to prepare. But most importantly she told us it would be OK. We had so much time to think about our son’s diagnosis and fear the conditions he would be born with, and we began to think if his spina bifida was “too bad” we weren’t sure we could go on. We just prayed a doctor would tell us with certainty what we could expect. She had no crystal ball to predict his life — but reassured us that we were in a best case scenario for the type of diagnosis we had.
We were waiting to hear her tell us how terrible this condition would be or how hard his life would be. Instead, we heard nothing but optimism. We were told he may face some challenges — but that kids with spina bifida live life in so many ways like any other child. Every time we expressed a fear or concern she let us know that children with spina bifida are amazing — and that she was certain our child’s future held so much potential. She helped us believe that our son would amaze us. Our hearts were broken knowing how much might be “wrong” with our unborn child but that was the day we began to fear less and trust that our child would be amazing. We began to trust that his future would be amazing — and knew then that we’d do anything and everything to help make sure his future was full of promise.
We left that first appointment still feeling so much fear but hoping for a clearer understanding of his diagnosis. She went above and beyond to order an ultrasound that same day to make sure we would better understand his diagnosis that same day. She even ordered a fetal MRI to give us the best possible understanding of our son’s diagnosis.
As Chance was born, she was there beside us in the 1st hour after he was born and was ready to take him into the operating room to help repair his defect when he was just four hours old. She wanted to make sure she was helping him have the best possible start in life.
Over the next year, we got to see first hand just how much she cared for our son. During his NICU days, she visited him just about every day he was in the NICU and came in on her days off when surgeries were needed. In his first year, he had a handful of concerns, and she was there all hours of the day and night to reassure us that his back was healing properly, that his shunt was okay or if it needed attention, and made it a point to be there beside other surgeons when he required other surgeries. She was there even on times when she was on leave to answer questions and even was able to guide us as other doctors had overlooked shunt concerns. In his first year Chance was her baby — and she was there every single time we needed her to make sure he would be OK.
In Chance’s 1st year we spent far too many days in appointments and in the hospital as he underwent countless tests and 11 total surgeries that first year. Every step of the way she was there helping make sure Chance was okay.
As Chance has grown year by year — we’ve come to admire his personality, his strength, and determination. She’s reminded us time and time again that he’s amazing and that he would get through every moment he faced in life. We can’t imagine life without him here.
So many times over the past several years we’ve had concerns arise, and she’s been there to address concerns related to his neurological health. I admit as a mother I’ve learned to research and learn so much about this condition — but at times the more I learn — the more it worries me knowing what challenges he could face. Every single time we’ve faced a worry about his health she’s been there to help guide us and make sure he gets the care he needs – always sharing her honesty of if he needs more tests, another surgery, or if we can stop worrying and trust that he’ll be okay because some of these things he’s faced are “normal.”
Yes, I suppose it’s time to pause to thank our favorite neurosurgeon in the world today. Dr. Johnson, I know nearly six years ago I thanked you — but here I am six years later feeling incredibly blessed. We didn’t realize 6 ½ years ago that we’d be surrounded by so many doctors who would become like family — who would be there every time to help Chance. I don’t know how clearly I’ve conveyed to you or the rest of the world — but it is because of so many amazing doctors like you that our son is alive today. It is because of you that we didn’t give up on our son’s life. We credit you to helping us save our son’s life – before he was born and in the many times you’ve taken him into surgery. We could have taken the other path — you could have told us his life would be too “tough,” but we are so thankful you didn’t. The very first day we met you we had thought so deeply about our options, and there was a point we didn’t know how we couldn’t give up with as much as we were learning might be “wrong.”
All these challenges that come with raising a child with spina bifida sure did seem scary then. All we knew then was that we loved this little guy more than words can express. We truly appreciate you helping us find the optimism – because so many other families aren’t as fortunate. We thank you for helping us trust then that he would be as amazing as he is today. You were right — children with spina bifida are unique and special — and surely our son has proven just how promising their lives can be. Anyone would want to give up when all you hear is what is “wrong.” We truly thank you for helping us hear the joy that can come with having a child with spina bifida. We appreciate you being there through every challenge — and continuing to reassure us through every moment of Chance’s life.
If I had one wish in this world it’s that parent’s would be provided with more hopeful information if they learn their baby might be born with spina bifida — information that didn’t scare them to death and that would help show them in words and pictures just how beautiful and amazing children with spina bifida can be. Parents need to hear more than what is “wrong” with their child when they receive an adverse diagnosis. I also wish for every family to be connected with doctors, like you, who will help them understand that there are so many rewards that come with raising a child with spina bifida. This journey has been a blessing — I appreciate you helping our family find the optimism to not give up – because we can’t picture a day without Super Chance in our lives. Because of you – he is here with us today.
Amanda Kern blogs at her self-titled site, Amanda Kern.
Image credits: Amanda Kern