While attempting to calm her fears I said I would gladly answer any questions that she had. At this point, they had just received their diagnosis, via an ENT, and had yet to meet with a neurologist. Her questions came with rapid fire and I answered each one as best I could. I wanted to be honest with her, without stressing her out. We left the conversation open ended and I told her to please message me anytime, with any other questions that may come up. Navigating this diagnosis is so overwhelming and getting shuffled from one specialist to the next can be frustrating. I wanted her to know that I am a Facebook message away with what knowledge and experience I have.
As their journey has progressed over the last two weeks she has continued to message me - keeping me in the loop. She has messaged me in the morning, in the afternoon and in the evenings and I know that is because right now, in her world, this is all encompassing. She is on auto pilot and this is all she is thinking about. With every new appointment comes new questions. What's next for him?
Yesterday, she told me that they have scheduled an appointment on Friday with the same neurosurgeon who preformed Autumn's surgery. She is so scared. Reading through her message I could feel myself choking up because we were JUST there and it is so, so scary. I understood, at my core, every word that she wrote and every feeling that she felt. I tried to calm her fears as best I could, telling her what an exceptional surgeon they are seeing and how wonderful that Children's Hospital is. I told her the same line that was told to me - over and over and over again - "kids are so resilient, you will be so surprised at how quickly he bounces back" and then I realized that when that was me - I didn't want to hear any of that crap. All I wanted was for someone to validate my fears. To tell me how terrifying it is to hand your child over to a doctor that you have met ONE time and allow him to cut into your daughter's brain and spine. I wanted someone to tell me that they understood the tidal wave of emotions that I was trying to navigate through (all while keeping it together on the outside - because you don't want to make it worse for a child that is already scared). I wanted someone to tell me that my daughter's diagnosis was not my fault. That there is nothing that I could have done differently, while carrying her, that would have made a difference.
And so, that is what I said. I completely understand.
She will send me another message after their appointment on Friday, letting me know what the surgeon said. He may decide that surgery is not the way to go right now - and they need to wait. Or, he may decide the opposite. If it is the latter, I will be one Facebook message away to try to help her through it. It is so important to know that someone else has walked where you are walking. That someone else's child has gone through this - and is now on the other side - a happy, healthy almost-six-year-old. What I would have given for that.
I have always believed that we go through trials in this life so that we can learn lessons and help others. The lesson I learned from Autumn's diagnosis and surgery was to let go and let God. I had to relinquish control and have faith that God would see us, see her, through. And now - I get to help someone else. I am so grateful to be on this side of the journey and have the opportunity to ease the road for someone else, even if it's just a little. Even if it's just to say "I completely understand."
