Throughout my entire life, God has been teaching me patience. Most of the time, I didn’t realize it until I was removed from the situation. Recently though, I have been overtly aware this trial will teach me the patience I’ve been lacking for the past 27 years. Since Hannah’s birth, pretty much all we have done is wait. We’ve waited to see her, to get test results, to have surgery. We’ve waited for her to eat by mouth, for her to be off oxygen, for her sats to improve, and for her next appointment. Amid all the chaos I feel inside, there is also the calm of just sitting and waiting. I have officially arrived at Dr. Seuss’ “Waiting Place.”
“…for people just waiting.
Waiting for a train to go
or a bus to come, or a plane to go
or the mail to come, or the rain to go
or the phone to ring, or the snow to snow
or waiting around for a Yes or No
or waiting for their hair to grow.
Everyone is just waiting.”
I feel like this perfectly describes life with a child who has a congenital heart defect, or really any chronic illness. Waiting becomes a way of life; actually, it becomes your life. It is agonizing, and seems like an endless cycle at times; but we’ve always come through it. My anxiety has never gotten the best of me, time didn’t actually slow down or stop. We’ve waited, and the test result has always come, the appointment has always arrived, and the news, whether good or bad, has always been delivered. Then it starts all over again for something new.
This past week produced more things to wait for. We are now waiting for an appointment to get a second opinion regarding Hannah’s open heart surgery. It has recently come to our attention that her defects are much more rare than we were originally led to believe. After consulting a surgeon from Cincinnati Children’s Hospital, we were made aware there are only approximately 50 cases of ToF with AVSD in the U.S. each year. Finding out this information brought a flood of emotions. It was almost as if we found out she had a heart defect all over again. We haven’t had a chance to meet with our surgeon from Nationwide Children’s Hospital yet, so I’m unsure why this information wasn’t presented to us from the start. We’re willing to give the benefit of the doubt, but we have started exploring other options, and as of right now, are not planning on proceeding with surgery at Nationwide.
So, we are waiting for our appointment with the surgeon from Nationwide, we are waiting for our appointment with her cardiologist at Nationwide. We are also waiting for an appointment with the surgeon at Cincinnati Children’s to be scheduled. All the while, Hannah remains on oxygen with her sats showing little to no improvement. I am frustrated, anxious, and tired; but I’m sure everyone else who calls the Waiting Place their home is as well. We’re all in good company here.