It’s difficult to struggle through the chaos jumping from one thing to the next with no break between. Emergency after emergency barrels you over and there’s no way to tell for sure you’ll make it up for breath before the next wave comes crashing down, pushing you deeper underwater. You manage to survive the onslaught and suddenly everything goes quiet. You cringe waiting for the next wave to hit you and it doesn’t come. Instead, there’s nothing. The silence is deafening as you wash up on a perfectly calm beach which would theoretically be a wonderful place to be except the transition is so abrupt it’s jarring.
This is what happened after our son was diagnosed. Suddenly all the chaos went silent. In an effort to cope I’ve been cleaning the house non-stop and working continuously on our son’s occupational and physical therapy. I picked out decorations for the house and placed them appropriately. I’ve done some research into my next writing project. I’ve put in time at work. Today it finally hit home. There are no more emergencies. We may never rush off to the hospital emergency room again juggling calls from specialists and the pediatrician to determine if they want our son immediately admitted. From here on out our interactions with medical professionals are going to be routine. Straight forward. Normal.
Our son’s feeding tube is simply a part of his life until he’s ready to eat enough to gain weight appropriately. Now that it’s established it’s medical and not behavioral there’s less pressure to “fix” the problem. We’ve been worried sick about our son’s muscle tone, but after being in occupational therapy since he was four months old and not lifting his head until 9 months old he’s now walking and crawling with minimal support. Certainly the work isn’t finished, everything we’re still working on just doesn’t feel like an emergency. Our feeding goals have changed from increased volume by mouth to preventing oral aversion. The gross motor goals will now be focused more toward safety.
Now that I’ve had some time to adjust to the quieter schedule I think I like it much better. I wasn’t sure at first. Change is always hard and it’s difficult to accept that we’ve done everything we can; The rest will happen in its own time. Ultimately, it’s a nice change to look around and see a clean (albeit cluttered) home. Having dinner together most, if not all nights, is wonderful. There are plenty of things to be disappointed about, especially the continued need for the feeding tube. I’ve decided not to focus on those things. It would be a shame to dwell on something which has no major impact on our son’s quality of life when there’s so much to enjoy. Now that we’re not spending a large portion of our time in doctors offices and hospitals, maybe Dad will have enough leave to take a vacation next year. Maybe we’ll go to the beach. A nice quiet, calm, warm, sandy beach.