We confess that we had forgotten what Oliver was really like. We forgot the effervescent joy of tickling him until we are all howling with laughter. We forgot what it was like to watch him, from across the room burst into spontaneous laughter at a video on his iPad. We forgot what our boy is like when he is not in pain or discomfort. His baseline personality is happy and joyful. At his core he is playful and affectionate, but the diseases and discomfort rob him of the uncomplicated life an eight year old should have.
The past days after returning from the hospital, Mr. Giggle Pants has returned. We feel like a black cloud has moved off of the top of our house. We are both finally exhaling a little bit, and it feels so nice. The diagnoses remain. The sadness is pervasive, but not always defining. We are so thankful for this reprieve. All three of us feel a little more buoyant than they have since last September, when our world started to unravel.
The lightness we feel may also come from the fact that we have finally gotten our arms around the meds, the feedings, the appointments, the 14 in-home nurses, therapists and workers to manage for Ollie’s weekly care. The complexity is now more routine than overwhelming. All that seemed impossible on January 12th; but work hard on anything for 45 days straight and you’ll get better.
Last Thursday, we felt an enormous weight of worry with him collapsing dozens of times a day. We had a total rush of adrenaline and felt we were heading in a bad direction, fast. What is remarkable about Oliver is how quickly his body, mind and mood can swing. He was in a seriously life threatening situation only 5 days ago, and now is breathing normally 85% of the time. What is going on with this kid?
Today, we are on the road again for Oliver’s pre-scheduled appointment at UNC’s Pediatric Clinic at Rex in Raleigh. We went to meet with the Feeding Team; an interdisciplinary team that includes a speech therapist, dietician and PA from the GI department. It was so reassuring and helpful to have all three of them in the room collaborating on Oliver’s care. We feel hopeful about the changes we will be making, and hope they will (for real) keep us out of the hospital!
So we are hoping the good times keep rolling over here at Lanier Landing. We pray that black cloud gets a little less dark and hovers off to the side for a few months. It sure feels nice to see the sun break through those omnipresent clouds, and let it warm our weary faces. Is it naive to think that perhaps spring came early not just to the daffodils in our front yard, but also in our lives? Perhaps, possibly, the dark season has ended and we’ll get to enjoy a spring, summer & fall season before going through another winter? I love this John Bunyan quote, “it is said that in some countries trees will grow, but will bear no fruit because there is no winter there.” The important thing to remember is there is a reason for winter. Suffering is not entirely wasted unless you allow it to be. Our dark season with those long nights and brutal conditions does have a purpose. Without winter we can’t really bloom. And wouldn’t it be a tragedy if we never get to see one another’s full beauty? Without winter we can’t bear fruit. And fruit is always the external evidence of what the tree is really made of. If it is a good tree, the fruit it creates is not only beautiful, but it can feed and care for others. So perhaps we shouldn’t always want to skip winter, but learn to embrace its cold beauty.
There is a time for everything and a season for every activity under the heavens