The holiday season is coming! The holidays are stressful enough for the average family – add Shwachman-Diamond Syndrome or another chronic illness into the mix and the holidays can be overwhelming.
Many families like ours may not even have the option to go home for Christmas or Thanksgiving. Sadly, we have to make choices that other people do not. Do we use vacation days so that my husband can be at the hospital when both children are undergoing procedures requiring anesthesia or do we save them to use for a family vacation?
Even with personal days (sick days) and vacation days, there never seem to be enough to go around when your life revolves around medical events. The last few years we have opted to go with my going to the hospital alone, so that we could spend some time with the family over the holidays.
When my husband says, “Let’s go home for Christmas,” or “Let’s go home for Thanksgiving,” I have to admit that my first thought is not, “Oh boy! That would be wonderful!” While I love his family dearly, traveling home for the holidays is an arduous task. While packing, I am not singing songs of exultation.
I cannot even begin to count the number of times we’ve made trips far from home only to discover that while I remembered the IgG (immunoglobulins) and kept them on ice, I forgot some essential piece of equipment necessary to complete the infusions. At home, we always have back up supplies and extra Tegaderms available, but when we travel, our back up medical supply unit does not come along for the ride.
I have kept the packing to a minimum by packing one spare of each piece to the infusion set. The last things I ask before backing out the driveway are, “Did the pump(s) make it into the car?” “Check!” someone yells, and then I ask, “And we have the IgG on ice, right?” “Check!” “What about the backpack with all of the medications?” “Checkaroo!” I usually breathe a sigh of relief, say one Hail Mary and we head out on the road.