Sorry I checked out on y’all this past weekend. I don’t always pay attention to the passage of time so well when we are in full Courtney medical mode. I simply try to get through each day with as few panic attacks and meltdowns as I can. Those would be my meltdowns of course.
Miss Courtney continues to work her way through this new onslaught of daily seizures and very slow incremental med changes with the determination my ancestors would be proud of. We Irish/German are a stubborn lot you know. Not prone to giving up easily in the face of one hell of a storm. I of course am ready to throw in the towel. But not my Courtney. She fights through each seizure with such strength.
I am in awe of my girl.
After suffering through a four or five or eight minute onslaught (struggling to breathe, lips turning blue, coughing and gagging) she curls up in my arms and sleeps. She is just worn out from the whole process and it doesn’t seem to be improving. We have not gone more than 36 hours without a seizure and that’s the BEST she has done in a week. I want my three or five or seven day stretches with no seizure back. Like NOW!!
The isolation and lack of adult company is harder for me with each passing day. I was never more excited in my life to go to Youth Ministry than I was last evening. Jonathan stayed with Courtney so Jerry and I could go and support our teens for their annual talent show. It was just what the doctor ordered. Lots’ of hugs and smiles to go around. It did more for my mental and emotional state than losing ten pounds and that’s saying something.
Oh the issues of being an extrovert while also being called to be mother/care giver to a medically fragile child.
It’s not that I can’t run out from time to time. I don’t want to right now. I feel tremendously guilty leaving her, even with Jerry and Jonathan. I feel this heart tug to stay by her side and watch and wait. That whole mother instinct is strong young paduwan…very, very strong right now.
I am also coming to understand in a much deeper way the corporal work of mercy of “visiting the sick”. Our whole day is better and brighter when we get company, even if it’s just for 10-15 minutes. It’s enough time to have an adult conversation and sip a cup of tea with a friend. Miss Courtney gets to hear a new voice in her day. I am determined that when things are better with her, we will take this new understanding and put it into action. Not sure how, but I know the Holy Spirit will let me know. He hasn’t let me down yet.
I am also slowly learning to let go of all the trappings of the season. The tree is up as is the Nativity scene, but due to our current financial stretching (we won’t even get into the mail that came today from our insurance carrier…it’s just too hard to grasp at the moment), the usual baking, gift buying and receiving, galavanting here and there visiting those we love, will not be happening. I may get around to baking a dozen or so cookies in the next few weeks but that’s about it.
I am so happy that Jonathan is so understanding about this situation. I guess that’s what happens when your kid turns into a full fledged man right before your eyes. He is such a gift to Jerry and I. He truly is. Don’t misunderstand, he still drives us both nuts from time to time, but when Courtney is not well, he shows up in a HUGE way. So far his only Christmas request has been for those promised cookies. Jerry has had a harder time with things. He loves this time of year, even with his natural Grinchiness, he still loves to see an array of surprises packed under the tree and many culinary delights being created in the kitchen.
For the first time since Courtney was born, I realize that I just don’t have it in me to do the big “ta dah” this Christmas and it makes me sad. I am nothing if not an overachiever when it comes to gift giving and holiday celebrating. But this year, instead of dreaming of sugar plum fairies and chocolate cupcakes, new clothes and cool gifts, I dream of quiet seizure free nights and peaceful days for my girl.
So Mr. Santa Claus if you’re listening…the only thing I want for Christmas is for my daughter to laugh like she used to, spit spinach and peas at me instead of just staring into space and drooling, and hum and sing like no one is listening. That’s it…and maybe a winning lottery ticket to but that would be a bonus.
Hope all is well with you and yours my friends…
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