Alecia is my wife. She keeps it all together and makes it all work. Nothing is ever a big problem for her. She knows that things have to be done, and she does them. She's always been like this.
Autumn, 2007. This is how our weeks go managing Owen's glaucoma:
Owen is a month old. He has pediatric glaucoma, an unfortunate diagnosis for a child who doesn't deserve the lot he has drawn. Owen has just had two surgeries on his right eye. First, a tube shunt was placed in his eye on September 11th, 2007 to help keep the pressure under control. The surgery was a success, but too much fluid initially drained out, so he had to have a second surgery on September 14th called a reformation of the anterior chamber. Essentially the eye had to be reshaped and the fluid inside the globe had to be brought back into balance. Pediatric glaucoma creates high pressure in the eyes, and this robs children of their vision by damaging the optic nerve. Controlling the pressure is the key to preserving vision.
After Owen's second procedure we fall into a groove. We have weekly visits with Dr. Walton in Boston. We pack into the car and drive about 3 hours to see him every Saturday. The trip takes a bit longer than normal because we have to stop and nurse, change diapers, and generally keep the children happy. Owen has his pressures checked. If the pressure goes up, we get scheduled for surgery, which would occur on the following Tuesday.
Alecia has a hotel room booked every week for 4 weeks in advance. Every week. The reservations need to be made and managed separately. If we need surgery, the hotel would be reserved for the week and we'd be ready to go. When Owen gets checked on a Saturday and we are told his pressure is fine, we drive home (after a trip to the New England Aquarium) and Alecia cancels the next week's hotel reservation. She then tacks on another room reservation on the end of our long chain of reserved hotel rooms.
Every trip to Boston is filled with some anxiety. Is this the week that the pressure will be up and we'll need to spend the week in Boston for surgery? Is Owen seeing things? Are his eyes ok?
We frequently look into Owen's eyes to see if they are cloudy or enlarged, signs that his pressures are rising. Remember looking into your baby's eye, just to connect? We do it to connect and to monitor his eyes.
We live like this for months. This is our normal.
Alecia manages it all. She has a notebook and jots down things about hotel reservations and such. She makes sure everything is on track. She makes sure we are prepared and ready to take care of our son.
And it is never a problem. Ever.
It is never a hassle to pack up the car, drive 3 hours for a half-hour appointment and troll around Boston, only to drive home that evening, arriving after dinner and putting the kids to bed. It has never been, and never will be, a hassle or inconvenience.
The children fall into the routine. Owen is awesome. He is held by Alecia for his eye pressure checks, crying occasionally, but never too bad. Alecia has a small container of sugar that she fills with water and dips a pacifier in during the exam. She then places the sweet treat in Owen's mouth to keep him calm during the pressure readings. It becomes normal for him. To this day, Owen sits in Alecia's lap for his pressure checks, and does exactly what he is supposed to do to allow Dr. Walton to get a good reading of his pressure.
One problem Owen has when we travel home from Boston: his little body knows when we are 16 miles away from home. Every trip to Boston, the little baby in the back would start fussing as we are traveling on I-90, and about 16 miles from home, he'll start crying. We could almost gauge our progress in the trip by it. Almost home, and here comes the fuss.
Shh. C'mon buddy. We're almost there. Shh.
Should we stop to nurse? Change a diaper? Relax? We're almost home. Sometimes we push through with the crying baby, other times we stop until Owen settles down. Josie, Owen's big sister, is 2 years-old, and she too, never complains about the car rides, the time away from home, or the responsibility of caring for her little brother's eyes.
That's the routine, and it works.