It has been a rough two days. Miss Courtney’s seizure’s are difficult to watch let alone try and handle and there has been an uptake in their frequency. It’s during these times of increased stress when the doubt begins to creep into my head and my heart.
“Are we doing everything we can for our Courtney?”
“Does she know she is loved beyond measure?”
“Does she understand that her Papa, big brother and I will mourn her loss but we don’t want her to stay because we fear her going?”
I know it may sound crazy to you but I worry that there may be something else that can be done to help her or she may be remaining her because somehow we can’t let her go. It’s craziness but that’s what goes through my head at 3:23 a.m. as I am holding my daughter, exhausted from another seizure that we can’t stop.
I realized that today marks one month since we visited our family practice Doc and we began officially walking down this path with our Courtney. One month of that 3-6 months is now gone. I am at a loss for how to feel about it. I am numb. I think I try to stay in this emotional place because if I really start to think of my life without her, I cannot guarantee if I will make it back to the land of the sane.
Right now I need to remain in the land of the sane and functioning. But I have to admit as the days and weeks pass, it gets more difficult for me. That’s where my reliance on the grace of Our Lord comes in. Without Him, I don’t know where I would be. Truly, I do not.
Only God knows the time and date of our girls homecoming and as these days stretch out before us, new challenges arise for her and for me as her primary caregiver. I ordered a sheepskin rug thingy yesterday for her to lay on because she has lost so much weight that her poor little bum and spinal bones are all poking out. We need to be so careful with lifting her and shifting her position now due to the complication.
It’s also becoming challenging to change her clothing because of her muscle weakness. So it takes this Mama forever to get my Courtney all pretty in the morning, but then it takes me forever to get ready as well, so maybe it just runs in the family. LOL!
Our other new challenge is her tube feedings. She starts to cry if you feed her the full amount of her tube feeding at one time. Because of her hiatal hernia and the fact that her tummy has shrunk, we have to give smaller amounts over a longer length of time. It’s all consuming her care, but I don’t mind, really I don’t. I only do what I would want done for me. It’s the only way I can show her my love and I really NEED to do that these days. My mother’s heart can’t handle it any other way.
We will soldier on, taking it each day as it comes, wether I have slept or not. I thank goodness for Amazon Prime Video Streaming that makes life a little less lonely at 3 a.m. while I wait for the next seizure to overtake my girl. Any recommendations?? I am open…these nights tend to stretch on.
I am also thankful for the daily Mass readings that keep my eyes focused on My Redeemer. His words remind me that we are not made for this world but for the next. I am thankful for happy mail and the fact that my mother comes twice a week to help ease my burden slightly. I am also thankful for all of your prayers and words of encouragement as we make our way through this.
God is good, ALL the time.