|With Mommy, Daddy and Godmother |
extraordinaire, Megan, at the Epilepsy 5k.
As the weather gets warmer in Chicago, I find myself out and about more with Sadie. I am always a bit apprehensive about taking her places. Primarily because I don't want her exposed to people who are sick (which is always possible when she is in a public place), and second - because I am still learning how to answer questions about her. Now that she is looking more like a typical toddler, people tend to wonder why she isn't walking, talking, etc. - the questions we never faced when she was a baby. To add to the apprehension, now that her NG tube in in her nose, there is a visual alert of a medically complex child.
I try not to let my own apprehension deter me from taking her out. Although I do tend to have my defenses up slightly when we venture into a public place - which is new for me. It's simply not in my nature to be defensive. In fact, I joke that often times when people say mean things, I don't even realize their malintent at first. Some might call me a "Pollyanna," but I'm OK with that. I'd rather be a bit naive than assume everyone is out to get me...but I digress.
|Last day in her rear-facing car seat.|
In addition to physically getting her out of the house, there is the additional stress of timing our outings around medicine times - or packing up medicines if needed, weighing/measuring and packing her food, and now the feeding pump, travel bag, stethoscope to check for feeding tube placement, etc.
As for our outings - I try to get her out for a walk at least once a day. She enjoys the fresh air and takes the best naps outside. Sadie also seems to enjoy shopping, and is a great shopping partner. She is quite content cruising the aisles. I think she is intrigued by the visual stimulation of shopping - lights, colors, etc. Home Goods seems to be her favorite store. This also works quite well for Mommy (much to Daddy's dismay.) The only drawback is that it's quite difficult to push a wheelchair and a shopping cart, so our purchases are limited to what can fit underneath Sadie's stroller (much to Daddy's delight.)
Because of this, grocery shopping with Sadie is nearly impossible. Although a few weeks ago, I was pleased with myself when I discovered I could push Sadie's chair at the grocery store while filling up two recyclable grocery bags over each shoulder. A drive thru grocery store in my neighborhood would be much appreciated (anyone...anyone).
Finally, there is always the chance that she could have a big seizure while we are in a public place. Her seizures are still subtle twitches that I doubt anyone would notice unless they were looking closely. However, if she does have a more intense seizure, or one that lasts longer than I am comfortable with, it means heading to the car to administer Diastat. Luckily I've only had to do this on one occasion, and fortunately I was with my sister in law at the time. The only casualty was abandoning a nearly full cart in Target.
So, despite all these deterrents, I still do take Sadie out and about quite a bit. I think she enjoys it, and I want her to have as "normal" a life as possible...and normal means getting out of the house from time to time.