Lillian continues to struggle with keeping her tube feedings down, particularly her first feed of the day. She is coughing quite a bit at night and I can hear the drainage just sort of stuck in her throat. She has spent the last 15 minutes holding her nose and blowing so hard I can hear it coming out her ear tubes. She is having quite a bit of trouble swallowing ANY type of solid. Most of the time she winds up gagging or getting so choked I start thinking she'll need the heimlich. She seems to be doing ok with liquids. I am keeping her out of big crowds trying to avoid areas with tons of germs floating around. Her therapists and I thought it best to stop therapy for this period of surgery time and since it falls around holidays, it's not like she's missing all that much anyway.
One would assume that after five years I would be accustomed to all this surgery stuff and especially all the illness she deals with so regularly. Unfortunately, I don't think I am. Does anyone else feel that way? Holla back. I think it's partly because I WANT her to be well so bad and not have to struggle so much. I don't know.
I struggle at this time of year. It's not something that stays with me ALL the time...I think it is just the anniversary of when life changed so dramatically. Changes that have been so incredibly stressful...but also indescribably blessed.
I still can't really wrap my brain around the fact that in less than a month I will be handing her over to a surgeon, yet again, and the nerves and the tears and the hopes all mount up. It becomes so emotionally taxing to put her through each thing. I actually made it out of the OR this last time before the tears fell. Then, I sat in the waiting room, staring out the window crying quietly...wondering to myelf why do I cry....and it hits me that I'm weary, so weary of putting her through it. She is so aware of what is happening now, it's harder and harder. She knows where we are and what is coming and she fights the medication they give her for calmness. Even as I type, scripture fills my mind about not worrying about tomorrow...God is already there. I know. I know. It's my faith in knowing that very fact that gets me through every day. If you wonder how I do it...that's how. Not in my own strength.
Thank you Jesus for another day. Another day with my Lillian and each of my girls. I know your hand is on us and all that is to come. Bring me Your peace. In Your Name