Guess what I did this weekend. I brought Baby Bear to the lake, and he went in the water!
Sounds like a pretty typical weekend for those dealing with this hot New England summer (I’m NOT complaining, bring on those beach days…at least on weekends, when I’m not sitting in an office).
For me, this is anything but typical.
My family is lucky enough to have access to a cottage on Lake Winnipesaukee during the summers. A place to sleep, a place to sit on the sand or float in the water pretty much any time we want. Nice, right? Except, in the almost five years since becoming a mom, this is the very first time I’ve brought my child to the lake. I’ve been up there with family, friends, cousins, cousins kids, nieces. I’ve been up there pregnant and not pregnant. I’ve been up there prior to being a mom and after becoming a mom. But never have I been up there with my child. Until this weekend.
Quinlan was born towards the end of lake season. By the time the following summer rolled around he was still admitted to the hospital. The following summer when he had finally been discharged, he had a trach, ventilator and g-tube. All of which make it hard (not impossible, but hard) to make the one and a half hour drive to NH, stay overnight, never mind taking a dip in the lake. Again, not an impossible task, but one that never seemed like a viable option for us.
I had often thought about what trips we could take as a family. It was a short list. Renting an RV so we could drive a good distance but still be able to keep his ventilator, battery, O2 monitor, and g-tube plugged in. And, of course, keeping track of where all the closest hospitals would be at all times. We looked into renting a house for a week. Again, an easier vacation so all of his machines could be plugged in most of the time. This would involve checking with the renter to ensure electrical outlets were up to date and could handle multiple machines being plugged in continuously. This could be doable. And yes, still mapping out exactly where the closest hospital was located. It wasn’t that we didn’t want to take him on vacations. It was far from that. It’s that being the parents of a medically complex child, especially one that requires being plugged in at all times, literally plugged in, puts a bit of a different spin on “vacationing”. No vacation is easy with kids. In fact you usually need a vacation from the vacation (from what I hear from others but am slowly learning for myself). To leave the comfort of your own home, where you know where every extra trach is, which drawer every piece of gauze or medical tape is kept, and having a nurse as another set of hands and eyes watching over your child, that’s scary. If you’re lucky, you may have a nurse or two that will come on vacation with you for a couple days. But I’m guessing having multiple nurses abandon their day to day lives to vacation with you is rare, and no one can blame them.
Packing up Baby Bear for two nights away was a bit of an ordeal for me. Not because I’m new to packing up a child, but because packing for two days when it doesn’t include a hospital stay, extra g-tube, ventilator battery and ambu bag seemed surreal. Yes, I certainly overpacked. Did he need 12 bibs for two days? No. Three days, maybe, but I still could have gotten away with far less. This new “normal”, which actually IS “normal” for many, is something I’m still getting used to. (Next time I’ll cut the number down to 8 bibs).
It’s not easy to sit here and feel fully excited about doing this “typical” activity. Something I can say I’m finally able to do, that I’ve wanted to do for years. In my mind that makes it seem like there were no firsts or “finally able to do’s” with Quinlan. Or that the activities we did do with Quinlan I wasn’t excited about. Clearly that wasn’t the case.
I guess it’s just that every new experience that I’m able to say “yes, I’ve done that” makes this new world of ours seem that much more real. Real in the sense that our “abnormal” is being replaced by “typical” and that comes with all sorts of emotions.
Sometimes I still feel like I fit in better with the “abnormal” than with the “typical”. Is that normal?