With all of the ArtPrize attractions spewed throughout Grand Rapids, which we've thoroughly enjoyed (despite the disappointing top-10-winner list), Gina and I decided to get away from it all.
In some bizarre way, GR still represents our battlefield, a metaphor for the war zone where we received our wounds.We've tried many ways to make our wounds heal, yet our scars - still soft and tender - have not started a quick enough path to recovery. We're searching for the ultimate distraction, and we're beginning to find them, one at a time.
For example, last Friday, Gina and I had a nice evening out of town in Lansing celebrating my birthday. While one might consider “Lansing” to be on the low-end of the exciting scale, it really doesn’t take too much to entertain us, as long as we can get away, as needed. As always, our trips are never long enough but we tend to enjoy the hell of spending time alone together!
It was great to enjoy out-of-town arts, attending the Lansing Symphony Orchestra and watching Gina’s cousin, Jon, play the bass. He’s very talented! Gina and I also had a nice dinner that night and a late check-out time the next day, which allowed us to get some much-needed sleep while enjoying the in-room hot tub, pretty much whenever we needed to...so all in all, very relaxing.
One of the keys we’ve determined since Eliza was born is that we need to focus on ourselves at least once a month in order to keep the home front stress-free or at least reduced to tolerable levels. We dream about the days when we can get away for a longer period, but we’ll take the little shots of respite here and there when we can.
In-home nursing care continues to come in, each and every day for Eliza and partially for Gwen. It’s been quite a significant adjustment for us, and really the psychology behind having nursing care is a constant process of scheduling, planning and emotional fine-tuning, which is very exhausting, because just like the mail, it never stops!
We knew that our house would become noticeably smaller after Eliza was born, and after adding a fourth room in our basement and re-shuffling things around, we were determined it would do just fine until we either got to a point when we ‘had to move’ or when the housing market recovered enough so we could eventually get something new.
Add a person arriving everyday at 6:30 a.m. to help get Gwen off to school (Gina is still getting up 5:30 a.m. to start Gwen’s Tobi® due to a pseudomonas flair-up), and who is in the house until 4 p.m., our already tight quarters start getting even more cramped. Then, simply pile in a therapist or a therapist and an intern or a nurse and a trainee, arriving two to three times a week, and you start to lose any sense of personal physical space, let alone a separation between care-giving and family life.
We’ve made a few adjustments that we’re hoping will help us…we’ve moved Violet downstairs with us, which will make sense once she starts climbing out of our her crib and/or is ready for potty-training. It allows the nurses to come in and tend to either Gwen or Eliza without us having to interact, as long as we stay downstairs…either way, it’s still an imprisoning feeling, but we’re hoping this will help us make it through the winter months with a bit of ease.
I’m sure, we’ll be dedicating more posts to the evolving psychology of how you deal with these kinds of life changes. We are grateful to have the assistance but there is an emotional toll and I think having cramped quarters has intensified these feelings.
We have found a positive side to the extra help – having free time to think…Gina and I have been able to look beyond our situation as an ‘affected family’ and instead view our role as care-givers a bit differently than we ever have in the past.
In the future, our roles as care-givers will be reduced. We can finally be parents and a family, without the burdens or stresses of care-giving. After primarily expressing ourselves through care-giving to Gwendolyn for eight years, we will finally have an opportunity to focus on improving her life through other means, or simply just loving her as she is, without having to administer drugs, change diapers and provide hygienic care.
We will have time to focus on providing the best environment for Violet to flourish in, without having to constantly ask for her patience. We will have time to read books to little Eliza without having to feel guilty for not doing enough therapy or worry that she’s not getting enough.
We are finding these kinds of distractions to be of the highest importance, and are planning on finding many, many, many more before the winter arrives!
