Hello My Sweet Friends,
Over the course of the last week, a lot has been going on behind the scenes here at Chez Lenaburg. Unfortunately for us, Miss Courtney’s grand-mal seizures have returned which means a lot less sleep and a little more stress for her Mama. I will say that the past few months since we came home from the PICU were lovely without the daily onslaught of seizures that would steal my daughter’s breath away as well as my peace of mind. This never gets any easier…watching your child struggle to breathe.
With the return of the larger more invasive seizures, an emotional torrent has descended upon me, one I was quite unprepared for. This journey that we have been on for almost 20 years has had many highs and lows, but through it all God has been blessedly present walking right beside us guiding us as we care for our sweet girl. I am so incredibly grateful for the grace that flows on a daily and sometimes hourly basis. I don’t know where I would be without it.
Every once in awhile the enormity of what has to be done every day to support Courtney and provide the best life possible rolls over me like a freight train and I need to take a very long, deep breath and re-asses what/why/how I am doing things and where I need to make some changes to bring back balance in the force. Between the tube feedings, diaper changes, physical therapy, regular meals by mouth, doctors appointments, occupational therapy, med changes and daily “entertainment” PLUS everything that must be done to care and manage my home, get dinner on the table, meet my writing goals, exercise, etc…etc…etc… It’s a lot to say the least and I am tired.
So I am going to step away for the rest of the week here at Passionate Perseverance and take a little breather. Not to worry, I am OK or at least I will be. Miss Courtney is sitting next to me as I type this, smiling. I will figure out what needs to change and make it happen. I just didn’t want you to worry when I disappeared for a few days.
So enjoy your week, grill some good stuff, and maybe even enjoy an adult beverage. I know I will. If you have a moment say a little prayer for me as I figure out how to make this new schedule will work for our family. A new path lays ahead of me and Miss Courtney and my prayer is that I can navigate it without totally losing my sanity or the hope that dwells in my heart. Hope is what makes it all possible…so hope we shall and sleep we must.
Thanks for walking this with us friends…you all ROCK!
See you Monday!
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