when I have it…I am invincible…
when I lack it…I cower under the table with a soft blankie and don’t come out for hours because the world is mean, meanie, mean and I don’t like it at all.
yes…this is where I am today. I have recovered from the great Dorito’s incident of 2013 and am now five pounds heavier, which means it is harder to button my new skinny jeans, which means less oxygen to my brain or something like that.
I need as much oxygen as possible these days to stay on my toes when preparing to deal with a young lady who after twenty years of being quiet and amenable to her mother is showing signs of teenage rebellion.
Miss Courtney is on week two of us decreasing her Depakote level and she is waking up to the world around her. It is amazing to watch and wonderful to experience as her Mama. She is singing every day, bellowing for her breakfast…and lunch…and dinner. She tells you when she has had enough story time or Playdoh time or is done with anyone touching her. And then of course, there are the dramatic sighs…“**SIGH** Mama, you are just not being entertaining enough. **SIGH**” She is laughing again, smiling all the time and sleeping on a regular schedule. It’s the sleeping I am most excited about.
We have hope once more.
Her liver enzymes are stable. Her ammonia levels are finally within normal range and the kidneys are working like a champ, as shown by the three days in a row that we have gotten our bedding changed, if you know what I mean. The encephalitis is gone and she is responding beautifully to the antibiotics for her ears.
No one can explain this. Not one of her doctors or specialists. No one.
Her neurologist just shook his head and said “This is classic Courtney. Never count her out. Never. I have no explanation.”
Now that’s not something you hear everyday. But I know deep in my heart what the answer is.
Prayer…unceasing and unending prayer…said by you for my girl.
She has discovered her voice and her temper. She is not a very patient young woman, this daughter of mine. I had no idea that this particular drug took so much of her from us. It is absolutely amazing to watch this process unfold.
She is still homebound for 75% of the time. Her immune system is non-existent but Mama is working on that with the help of elderberry syrup and echinacea. She has her appetite back and will be weighed next week, hopefully with positive results. Her two biopsy sites are healing beautifully.
We have a totally new kid and my heart sings for joy. Until it’s time to put on her shoes. Then the singing stops.
Apparently Miss Courtney does not want to wear shoes. She will curl her toes and not let me put her shoes on. It was cute the first 20 times. Then it was funny as she giggled while I tried to uncurl her toes and tie her shoes the next 40 times.
Then it wasn’t funny anymore. More an exercise in frustration. I am learning that my daughter is a spicy little number with an opinion she has been waiting to express for 20 years.
Things are as typical as they have ever been…unless she is having a seizure…then all bets are off…
It’s in those moments I want to hide under the table with my blankie. These seizures are hard ones for my girl. They are difficult to watch and harder to calm her from. I pray and soothe and hush and pray some more.
But they come when they come and I wait and Courtney fights.
It’s what we do.
We will try to find a new rhythm once more with my resilient daughter who gives me hope for the future and continues to frustrate me with her curled toes.
I shall meet the challenge with joy in my heart and patience as my constant companion.
Unless there are shoes involved…then all bets are off.
Thank you for your continued prayers for our Courtney. This miracle is a direct result of your prayers. Never doubt that for one moment. Apparently God has quite the plan for this girl because I sure can’t figure it out. I thought things were going one way and now we’ve turned completely around and are headed in another direction.
At least today we are. Who the heck knows what tomorrow will bring. I won’t even go there.
Two weeks ago, her blood pressure was crashing and they were pushing saline to bring it back up.
Now the only things that are pushing are Miss C’s toes trying to escape the horrid shoe.
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