Taking a vacation with your children can be a joyful as well as stressful experience. Add the additional complications of caring for a child with extra needs and sometimes you wish you had stayed home.
The prep work before you ever even leave is more extensive. Critical items, in our case bolus extension tubes, blender, etc; cannot be forgotten. For the rest of the family, an item left behind can easily be replaced. On a beach trip a year or so ago Kimberly’s Mic-Key button came out during the night and without a spare we were in a panic. The opening to her stomach begins to close up rather quickly. We ended up at Children’s Hospital of Kings Daughters an hour and half away to get a replacement. Since then we always carry a spare. Lesson learned.
Other than essential medical and food related items, there are other differences as well. For me, as previously mentioned, being on the water with a water loving non-swimmer is challenging. I truly enjoy seeing her having so much fun, but am happy we are inland for a while now.
Another less tangible but certainly significant aspect to enjoying a vacation with a special needs child is the opportunity for the parents to actually get a bit of a break. Without support from others or taking turns with the myriad of responsibilities, there is no “vacation” to be had. Brad and I always struggle with this. I appreciate when others offer to assist with watching after our tinker bell. Being with extended family allows for this, as they know her well.
Nevertheless I can hardly ever seem to truly relax. Maybe it’s a mom thing. Either way, the making of the memories and exposure to things new and different it important to me….even when it’s not all that “fun” for me.
I wish it wasn’t this way. There are so many experiences I want to share with my children. I become frustrated feeling like we are limited and try very hard not to let this happen. Sometimes I think I push it a little too much, making it harder on myself trying to accommodate Kimberly in not so accommodating situations/locations. I have prepared and given her feedings in some pretty unusual and inconvenient places. Potty time gets a bit cumbersome too and I loathe port-o-potties. But for the most part we make it work.
With all that said, sometimes I admit that pulling in the driveway to our house is a welcome site. Getting back to normal brings a simplification that is hard to find when on the road.