Sarah is amazing. In the day to day course of life a lot of amazing things slip by. Every once and awhile it is nice to be astounded, not by the newness but by the surprising sameness.
Every morning and evening there is a light show. Sometimes it is spectacular. Sometimes it is soft and gentle. It is never boring. How often are we paying attention? Every flower is intricately patterned. Every child is extraordinary; a moment to moment series of incredible adventures. Every relationship is unique. We experience, but rarely dwell on, the fascinating reality of communication, not just with each other and our surroundings, but with our Creator, if we so choose.
I was watching my own little miracle today. Sarah was babbling away to her sister. "La-la-la-la-la-ya-ya-ya-ya" (Lily!) I was astounded. How far she has come! How well she is doing! How cheerful she is, even though she is sick!
And yes. She is sick. Again. It is cold season, and Sarah has a cold. Nothing too awful, just the kind of nasty bug that makes you feel miserable and tired. Coughing and not sleeping.
I should write more often. As I am writing, my fears are losing their grip on my sanity. Which is good, because I was beginning to lose my grip in the tug-of-war.
In the past few months, Sarah has been to the hospital a number of times for unplanned stays. We took her to the the ER because she was having trouble breathing. As when she was three months old, it went from bad cold to terrifying-middle-of-the-night-event altogether to quickly. We were pretty sure it was RSV revisiting. The ER staff remembered us. Two familiar doctors, many familiar nurse and techs. It is difficult to get an IV in, because her veins "roll." Mine do too. That is one gene I will try to keep to myself in the future. In any event, they remembered the difficulty, and sent for the best guy they have to get the IV in. We knew him too. I have mixed feelings about familiarity in the ER.
She was diagnosed with pneumonia. Right lower lung. The doctor in charge compared the x-rays to the images from her last stay- some months earlier. Pneumonia. Right lower lung. In fact, it looked just the same.
When pneumonia is diagnosed by x-ray, what they are looking at is shadows. Lines are fuzzy where they ought to be clear. If you get pneumonia more than once, the x-ray should look different. It is a different infection. So the doctor wants us to follow up with pulmonology to discover if indeed it is pneumonia, or if it is something else. She suspects some chronic underlying issue.
We were educated about asthma. It not a diagnosis they are giving yet, but one they think we should be prepared for.
We will follow up with pulmonology, but we have not yet. Since that discovery, we have been back to ER with breathing issues. It was right before Sandy hit. She had a bad cold getting worse, and I was worried that the power would go out and she would need a nebulizer treatment. Her breathing was getting worse, the wind was picking up and I was nervous. After two back to back neb treatments, I called her doctor expecting to be put back on oral steroids (she had not finished the course of antibiotics from her last pneumonia yet.) The doctor told me in no uncertain terms to take her to the ER. I was much more surprised than I should have been, given everything. We got a pneumonia diagnosis and different antibiotics. We were only in the ER for a few hours, but the trip was not useless since I came home with an adapted inhaler, in case the power went out and she needed her breathing treatment.
This is a longish history to arrive at today.
Sarah was scheduled to get a surgery on December third. It is a surgery we have scheduled and rescheduled. First it was delayed because she needed a shunt in the late summer, then it was cancelled because she was sick in October. It is actually three surgeries rolled into one, so it is hard to schedule since we need three surgeons. It is a developmentally important surgery which was supposed to happen before she turned one- in September. She will have the first of three hand surgeries to give separate her fingers- this one would give her a thumb and pinky! She will have tubes placed in her ears to drain some fluid which is causing some hearing loss. She will have her cleft palate repaired. This is such a big deal developmentally! Hands! Hearing! Speech! Eating!
Sarah is sick. The surgery was cancelled today. Is it OK to admit I am discouraged? I am discouraged.
"May the God of hope fill you with all joy and peace in believing, so that you may abound in hope by the power of the holy Spirit." Romans 15:13
Sarah is sick. But she is cheerful during the day. She is chatty, playful and a pleasure to watch. This morning I woke late to find Sarah (brought into my bed in the early morning) snuggling with her older sister who sneaked in quietly. Lily had brought in a pile of baby books, and she was reading them to Sarah. These are my amazing, brave little girls.
Advent begins on Sunday. Advent is the time of preparation for Christmas. It is a time to contemplate the coming of our Lord, and to prepare for his second coming. Waiting and preparing. It is also the beginning of the new liturgical year. It is a great time to renew. How better to prepare for our Lord than to newly commit to Him.
Come, long-expected Jesus. Excite in me the joy and love and peace it is right to bring to the manger of my Lord. Raise in me, too, sober reverence for the God who acted there, hearty gratitude for the life begun there, and spirited resolution to serve the Father and Son.
