Merging into expressway traffic ranks somewhere between mildly stressful and heart-attack inducing on the scale of anxiety creators. On a recent drive downtown, I had to merge onto the interstate during a time of particularly heavy traffic. As I made my approach down the curving entrance ramp, I noticed several things about this upcoming maneuver. Since I tend to see PWS under every rock, even during a time when my left brain was totally engrossed in merging strategies, my right brain was writing this.
I had been driving peacefully down a neighborhood street when I turned onto a busy, but manageable, four-lane road that was my chosen path. The radio announced a traffic snarl up ahead and so I immediately exited onto the interstate to get around it. Not expecting to be taking this path, I had to change gears and reset my mental GPS in a matter of seconds. Had I known about this early on, I might have at least done something to prepare for it. Since I didn’t, I made an immediate choice to work out a way to get where I wanted to go by taking a different path.
When we find out that our children have a diagnosis of PWS, there is no time to think. We are following the path that all new parents take—pregnancy, delivery, baby—and then, without warning, the path ahead is blocked by a tiny chromosomal glitch and our way ahead is unclear. With almost no time to prepare, we find ourselves merging onto a multi-lane PWS expressway without a map or GPS to guide us.
As we approach the point of merger, all we can see is the mass of speeding families with children young and old, struggling, succeeding, failing, experimenting, lamenting, cheering, some optimistic and some totally lost, and many somewhere in between. It flashes across our minds that there is so much variation in all of these speeding families, but for whatever reason, we are sharing this path. It is too confusing to process so we decide to focus on the task at hand.
As the merging ramp curves and we struggle to keep our vehicle on the road, upright, and moving ahead, we begin to try to find a spot in that unfamiliar stampede that we can slip into. As we go a little further, the curve begins to straighten a bit and we start to drive almost parallel to the other families. We are near them, but not yet with them. Slowly, and with many checks of mirrors and of the available space around us, we start to accelerate. We see that the merging lane is wide enough for us to drive hesitantly for awhile, but that in awhile, it will be narrowing, then ending. Our time in this adjustment lane is limited.
Finally, there it is! Our spot. It’s coming, it’s clear, and here we go. With a little sputter and two sweaty palms, we edge on over, out of our safe merging space, and before we know it we are zooming along with the rest of the families. Once we remember to breathe, we realize that we’re actually in. A few other families around us have noticed us as new PWS travelers. Some drive on by, but others take the time to smile and wave. We note that the car behind us slowed down to make it easier for us to merge. The driver is smiling and seems to be trying to welcome us to wherever it is that we’re all going. Those moments of friendliness are so encouraging. A thought flashes by making us wonder what their lives are like and how they managed to make their merge. We want to know everything they know but realize that, for now, the task at hand is all we can handle and even that will take everything we’ve got.
Soon, as we are motoring along, another problem emerges. Although the road signs seem to be in our familiar language, we struggle to read the information because they are using familiar words in ways we don’t really understand. That last sign wanted to guide us to occupational therapy. We have a baby for Pete’s sake! Why would anybody think she needs job training??? Another one said hippotherapy. What? WHAT??? They give us directions to doctors and specialists and therapists and educators and service providers and counselors and more. There is so much information to process and so little time to make sense of it all. After a while, it’s enough to cause us brain freeze. And the abbreviations! Oh my, those abbreviations! UPD, DEL, PT, OT, SLT, HGH, IFSP, IEP, ARC, DX, TX, PWSA, FPWR, OSS, and on and on… What we wouldn’t give for a PWS dictionary!
One thing that can’t be ignored is that this road has so many more pot holes and so much more broken pavement than we expected. Sometimes we’re driving, but other times it seems more like we’re bouncing from one pot hole to the next. We swerve to miss rubbish in the road and slow down for all the construction. We wonder why repairs haven’t been made already and why the roads are in such bad shape. We make a mental note to get involved in supporting road projects as soon as possible, not only for ourselves but for the families that come after us.
After awhile, we realize that we’re getting into some kind of groove. In spite of our inexperience, in spite of the confusing language and the bumpy road, we are making progress. Our driving skills are kicking in and we are getting the hang of this. As we look at the other drivers, we see that some are highly cautious and others take more risks. We see everyone having times when they sail right along and other times when they plod along in the slow lane. We realize that even though we are new to this and have moments of hesitation, we are also rolling along like the other families, changing lanes, speeding up, slowing down, and making whatever adjustments are necessary to stay the course.
We notice when other new families try to merge into the PWS traffic flow and we become one of the ones to help and welcome them. We smile to ourselves as it registers how good it feels to be able to help others as we have been helped. We take advantage of opportunities to stop at a few PWS rest stops along the way and get to know some of the other travelers, to hear their stories and to share ours. These stops have refreshed our souls and inspired us to continue our travels.
From time to time, we see families with dents and scratches, some with even more damage, all speaking of hard times that have taken their toll. The remarkable thing is that even though the scars from these rough times are there, they have not overcome the power the family has harnessed to keep moving ahead. This may be the most encouraging sign of all.
If you are a newly diagnosed family, know that we have all been where you are. We all made that same initial and terrifying merge onto I-PWS and we all learned to navigate this new and challenging pathway. It’s a daunting task, but not as terrifying as it seems when you first begin your merge. We each drive differently, and at a different pace, but we are all going in the same direction, and we are going together. We each drive separately, but we do not have to drive alone. Maybe there’s enough comfort in that to get some of us just a little farther down the road.