This post was originally posted on my Fridays With Lorelei Facebook page along with several other updates. Tune in there for additional updates.
It was one of those days… Definitely nothing compared to a day in the PICU, but just a normal rough day as a rare-disease mom.
Oh how I pray that one day a doctor will say, “Hey mom, I know she is rare but guess what, we discovered a cure. There is a treatment and it will make her stronger, fix her random lab values and finicky organs, give all of you a better quality of living as well as a give you a break from the abnormal mental stress you go through on a daily basis.”
My kid was awake for maybe a total of 5 hours today. I worried my way through most of the hours she slept. I talked to three medical professionals about lab results and medicine options. I did more medical troubleshooting than any mom ever should. I questioned her symptoms. I questioned her path. I questioned myself. I questioned my future. I questioned if I should just stop the questioning and simply say “it is what it is… stop fighting this.”
I feel tired. I feel like I am a bugging her doctors. I feel like they must be tired of me. I feel like there is SOMETHING that can help make her feel better. I feel like I need answers. I feel like I keep repeating the same thing in hopes that someone will have another brilliant idea or a solid direction for her care. I feel like some of these decisions are too big for a parent to make, some of these tasks are too big for a parent to manage.
She is rare.
There is no cure for mito.
We can only treat the symptoms.
But even treating symptoms like vomiting and muscle weakness seems impossible.
I fiercely love my kid but some days I just want normal. Whatever that is.
Icing on today’s cake, she has two spots on ringworm, again, on her face. And we have family pictures on Monday. Oy.
If you don’t laugh you cry. Tonight, I may sip some wine and do the latter.
I don’t write all of this to complain. I write to get things out of my head and to give everyone who follows our story and prays for our family, a little window into the life of parenting children who are rare, who have special needs and who battle life threatening conditions.
Oh, by the way, before I could even get this posted, she projectile vomited all over herself, me, Minnie Mouse, the blankets and the couch. This is mito.
With a glass half empty of wine (only because I already drank the other half), Lorelei’s mommy…
