Dancing in the Rain
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A Trisomy 18 Journey

Life is not about waiting for the storm to pass. It's about learning to dance in the rain. -- Vivian Greene

Wednesday, September 28, 2011

Making Life Easier

Adjusting to life with Julia has required us to reevaluate our priorities and how we spend our time. In addition to caring for Julia, there is still laundry to be done, a house to clean, groceries to shop for, meals to cook, kids' activities to drive to and attend, schoolwork to review, and time to find to be together as a family. For the first 6 weeks after Julia was born we had family staying with us to provide extra help. Then we were pretty much on our own. Our neighbors pitched in a lot helping with Sydney and Isaac and getting them to school. We decided we also needed to get help in other areas. I started grocery shopping online and having groceries delivered (yay, Giant!). I found a meal preparation place (Dinner Done) that delivered to our area for free once a month. We order several meals at a time and stock our freezer. The food has been easy to prepare and so good. We are able to enjoy family dinners together most nights of the week with minimal preparation. Next we hired a sweet lady to clean our house every other week. She does an excellent job, and we love coming home to a clean house. Sydney and Isaac are big fans of this!
One area I have not been able to simplify as well as I had hoped is the kids' activities. Sydney's school hours shifted an hour later which already makes afternoons shorter for us. For two of Syd's activities we carpool with other families which is helpful for scheduling. However, having Syd gone 2-3 afternoons a week makes me really miss her! Isaac also has a sports class and is playing on a soccer team. Those two things are busy but will end in November. I will have to remember not to add any new activities after these end in November.
Several people have asked if we are eligible for in home nursing/respite care to help out with Julia. Our service coordinator from the county early intervention program gave us the phone number to begin the application process with the state and advised us that it could take two months or so to get approved. The idea of in home respite care has not appealed to me, so I put off the process. Once school began, though, I thought I would go ahead and apply just in case we needed it at some future point. Sounds logical, right? Well, it took over a month just to get the nurse and social worker here to evaluate Julia. Julia easily meets criteria for respite care and would have at least an LPN since we have oxygen in the home. During the evaluation, I learned that we would be responsible for finding our own nurse/agency and that once approved we would have to begin using the services immediately or lose them. Unfortunately, this is not what I was hoping for. On some level I know it could possibly be helpful to have some respite care. I don't think, though that the potential benefit outweighs my unease about anyone else caring for Julia. She's a tiny baby that needs lots of holding and soothing, and I want to be the one to do that. She certainly knows when I am the one holding her and responds well to me. Would Julia be comfortable with an occasional nurse? I have my doubts. I certainly would not leave Julia at home in the nurse's care. And I find the task of interviewing agencies and nurses daunting. I just don't think it's the right step to take right now. Or maybe ever.
For now we will continue to operate as we have for the last few months. We are keeping our eyes open to other things we could do to make life a bit easier. Suggestions welcome!


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