It’s been a deep thinking weekend here at Chez Lenaburg. The kind of weekend where you sit down and write lists. “To do” lists, “Dream” list, “Writing Project” list, “Personal Goals” list, you get the picture.
My husband and I have spent lots of time together talking through where we are today, where Miss Courtney is and where we want to be in the next few months or years. It was time, past time really to take a good hard look at things and decide what needed to happen.
Time just keep ticking away and neither one of us is getting any younger. My sweet daughter has her own journey to take and it requires much from, ALL of us in this family. It was nice to be able to just talk things out about how we want to go forward with her care. Is it time for the dreaded DNR? Do we need to get a second dietician who specializes in CP kids? What therapies can we afford when the medical insurance changes over on July 1? Do we need to move to have a home that is more handicapped accessible for our girl? The list is long in regards to Courtney’s care.
Let’s face it. This caregiving thing can be all consuming and suck the very joy out of your life. It has been that for me these past several months. I have been pulled into a very dark tunnel and I am tired of not being able to see the light. There were some hard decisions made this weekend, all to help me find that joy again. Joy in caring for my daughter. Joy in my writing. Joy in my health and well being. Joy in my spiritual life. Just plain joy!
It’s a rare moment when Jerry and I can sit down and really hash things out and talk about our individual feelings in regards to different aspects of our life. Miss Court co-operated by taking a nice nap today and we took full advantage of the time. We made a few decisions and wrote out some goals that we can work together to help her achieve. At least we hope so.
We made a prioritized list on things that need to be done to the house to help better care for her and we also wrote out some questions we have for various doctors/therapists that we will be asking in the coming weeks at out scheduled appointments.
Financially, things are always dicey because you never know when another medical emergency is going to rear it’s ugly head, wiping out our meager savings or requiring us to fundraise to pay the bills. It stressful and humbling and exhausting both physically and emotionally. We live a pretty simple life and it’s getting more simple by the month. Our big splurges are dry cleaning (for Jerry’s work wardrobe), basic cable TV, bacon twice a month and the once a week Starbucks run on the way to PT. Those may be things of the past if the insurance situation get’s more intense as I assume it will.
But I can’t worry about that too much or I will go bat sh@$ crazy. It’s a very short trip these days.
So, trust is a must. I know that we are blessed. I know that we have more than many. I know that our time with Courtney is shorter than most and we need to be cognizant of that in our planning. Life doesn’t stop, even when you scream and yell at the clock.
Living is what is required. Living with faith in God to protect and provide. Living with passion and truth. Living with joy and peace. Living with T25 and protein shakes. Living with bacon and chocolate.
We chatted about our individual goals and dreams, things we never talk about. It was awesome. We talked about where we thought we would compared to where we actually are. We talked about our individual dreams and how we might support each other to achieve them. God placed a few things on my heart some time ago, and I have been woefully neglectful of them. It’s time to get this train back on the tracks and start moving through some things on those lists.
So say goodbye to the funeral dirge of woe is me baby because this chick’s going to get some things accomplished here in this space, in my home and in my heart. It just means I have to trust God with the timing of it and rely on Him for the strength of will to complete the tasks at hand.