Scarred Daffodils And A Little Boy
I’ve been watching the daffodils in my yard cope with a slow coming spring. They sprouted up fast after a few warm days in February. Then it turned cold again, snowed a few times, and they stayed at their four-inch height for close to a month. They doubled in height this last week, and now have buds. But evidence of enduring the extra weeks of harsh weather remains in the dried and browned ends of the leaves.
Chronic illness and and ongoing medical treatments are like late winter storms for Nathaniel. Regardless of how hard we try to keep on keeping on through a respiratory infection or other illness, the increase in suctioning, time given to breathing treatments, and sleepless nights can’t be prevented. Fear and anxiety accompanies even the simplest doctor appointments and create a longer than expected disruption in our day. I tend to focus on the anticipated flowers in Nathaniel’s life. Reality looks a bit more like my daffodils right now. Promise and hope are there in the bud, but lingering traces of previous storms are visible too.
Nathaniel is scheduled for out patient surgery tomorrow. Tonight is the twentieth time I’ve reviewed pre-surgery instructions. I know parents whose children have been through double that number. I’ve known parents preparing for their child’s first anesthesia and surgery. From my vantage point in the middle, I suspect the former feel just as much concern as the later when the moment comes for anesthesiologists and surgeons to take their child. This never gets easy.
There will be two surgeons in the operating room for Nathaniel tomorrow: an ophthalmologist and a general surgeon. We have been treating strabismus for a number of years. Nathaniel has had one eye surgery already. Twice a week we dilate his strong eye to encourage the muscles in his weaker eye to do whatever they need to be doing that they are not. I am disappointed a second surgery is needed. I already know that we will continue the dilation drops after surgery, so it doesn’t feel like tomorrow will bring closure. Surgery is another step in an on-going treatment plan.
General surgery will be removing Nathaniel’s port. (Read about why Nathaniel needed the port here.) Since Nathaniel has not experienced a hospitalization this winter, the port has only been used to draw blood for lab work. The thought of Nathaniel experiencing an illness or test that requires an IV brings me to tears. I don’t want to return to the days of holding my son down for needle stick after needle stick while he silently screams and tries to sign for us to stop. But leaving a port in for an extended time is not risk free. With his doctors, we have decided it is the right time to remove the port and the security it has provided to Nathaniel’s medical team and us.
The surgeries will help resolve medical issues. But the experience itself, the very hours given to being at the hospital and recovering at home, will be time Nathaniel will not spend growing and learning. In the grand view of a lifespan, a six-year old is a seedling. Tomorrow will be another late winter storm. I’m ready for spring to come and stay for this little boy.