Life is a rollercoaster. Some days are good, some are bad. Some months are better than others. Some years you wish you could relive, either to experience their joy again, or to replace them with something better. It's no different for you or me, we're all just doing the best we can.
For me, doing the best I can means taking care of my girls and keeping busy. I'm still feeling pretty awkward about not working (as a geologist) -- I miss the intellectual and interactive side of it. But at the same time, I'm not really at a place in my life that I care to go back to work. My mind is too cluttered with more important things -- my family. I guess I'll continue to live vicariously through Devon's work, and try to keep my mind semi-sharp by listening to his daily dramas as a consultant. I really appreciate that we have similar careers, so that I can feel like I'm keeping involved in the industry.
Keeping busy is important for me. I'm not really very good with free time, as most of you know. It's important for me to get out of the house and go places, interact with people, and "get things done." Despite the extreme sleep deprivation of the last week (thanks to Screamer Rowe), we have been keeping busy. Campfires & tents in the back yard, a visit from the Sarmasts, playing with Ed, Kelly & Kate, mini-golfing with Avery, doctors, labs, & blood pressure checks (okay, do those really count? They certainly get me out of the house, and since I know the healthcare professionals so well now it's becoming quite social as well). I've also become very involved with a couple of on-line Yahoo Groups, one dealing with Infantile Spasms and another for Undiagnosed Syndromes. I've learned a lot over the last couple weeks from these groups, none the least of which is that we certainly don't have it THAT bad. There are others out there with stories that wrench my heart, and they get up and get going each and every day, doing the best they can as well. What else can you do?!
However, all that business (i.e.busy-ness) caught up with me today. Devon & Avery headed out to the new Firstenburg Community Center for swimming, water sliding, and splash-padding, and there was just no way to drag Jordan & I along. Taking care of her is just sooooooo much work. We realized awhile ago that it's going to have to be one parent/one kid for quite along time. So, Jordan & I hung out at home, and that's perfectly okay. Such is our life. But it did give me time to mull things over, which inevitably lead to sadness. Remembering the dreams and expectations I had of a two-child family. Imaging the fun Avery & Jordan could have as sisters only two years apart. Wondering why this had to happen to Jordan, and pretending that it's all okay because she will never know how to be any different than she is. Hoping that one day she'll be able to tell us how she feels, whether it be happy or sad, tired or excited.
So today I cried. I cried about the decisions, big & small, that Devon & I have to make every day. I cried for Avery & the adventures she will miss out on with Jordan. I cried for all the time & money we spend on doctors and medications, and caring for Jordan, instead of being able to just play with the girls. I cried for sending Avery to daycare 3 days a week so we can take care of Jordan and all of her appointments. I cried at the ever-present idea of loosing Jordan next month, or next year, or before she's 10. I cried in frustration -- not knowing what to expect next month, or next year, or for Jordan's whole life. I cried looking at her feeding tube, and especially at the hospital-style feeding pump & apparatus in our living room. I cried because I really don't know what to do to make her happy, or make her feel better -- it's all just a guess. I cried over logistical things, like what are we going to do with our 2-story house if Jordan is never able to walk up and down the stairs? The downstairs has always been slated to be the future music room/play room. Now that plan seems out the door. I cried at the thought of having to sell this house for a 1-story model, for giving up the dream of raising our kids in this neighborhood after remodelling the house into our own little haven. I cried for all the work Devon has to do, with his job and his family to keep everything going in our household, and the constant stress that puts on him. I cried for not being able to spontaneously jump in the car for an afternoon or weekend adventure. I cried for the time that Devon & I don't have to ourselves anymore, to go out to dinner or catch a movie. [Of course people do offer to take the kids so we can do that, but believe me, it's really tooooooo much work for us to be gone for more than a very short amount of time, and it really is a lot to ask from someone, even if they offer. Especially right now with Jordan's ACTH treatment & side effects, and medication schedule, and feeding apparatus.] And when Devon got home and Avery was sleeping, we cried together.
Of course many of these things have a positive side to them: The compassion Avery will learn growing up with a special needs sister, the excitement of building or remodelling another house just to our liking (perhaps on enough land for a couple of horses & other outdoor animals), the ease of hands-free feeding, the special one-on-one time Devon & I carve out to spend with just Avery, the friends Avery makes & the things Avery learns at daycare, and all the time we do dedicate to Jordan, and how well we know her because of it.
I realize that although days like today aren't particularly fun, they are necessary, and constitute the lows on the rollercoaster of life. Without the lows, we could not possibly have the highs.
So tonight I'm hoping for some good, restful sleep, and a happier day tomorrow, for all of us (especially the Screamer).
No comments:
Post a Comment