This submit was initially posted on my Fridays With Lorelei Facebook page together with a number of different updates. Tune in there for extra updates.
It was a kind of days… Undoubtedly nothing in comparison with a day within the PICU, however only a regular tough day as a rare-disease mother.
Oh how I pray that at some point a physician will say, “Hey mother, I do know she is uncommon however guess what, we found a remedy. There’s a remedy and it’ll make her stronger, repair her random lab values and finicky organs, give all of you a greater high quality of residing in addition to a give you a break from the irregular psychological stress you undergo each day.”
My child was awake for perhaps a complete of 5 hours at this time. I frightened my manner by many of the hours she slept. I talked to 3 medical professionals about lab outcomes and medication choices. I did extra medical troubleshooting than any mother ever ought to. I questioned her signs. I questioned her path. I questioned myself. I questioned my future. I questioned if I ought to simply cease the questioning and easily say “it’s what it’s… cease combating this.”
I really feel drained. I really feel like I’m a bugging her docs. I really feel like they have to be uninterested in me. I really feel like there may be SOMETHING that may assist make her really feel higher. I really feel like I want solutions. I really feel like I preserve repeating the identical factor in hopes that somebody can have one other sensible concept or a strong course for her care. I really feel like a few of these choices are too large for a father or mother to make, a few of these duties are too large for a father or mother to handle.
She is uncommon.
There isn’t any remedy for mito.
We will solely deal with the signs.
However even treating signs like vomiting and muscle weak point appears not possible.
I fiercely love my child however some days I simply need regular. No matter that’s.
Icing on at this time’s cake, she has two spots on ringworm, once more, on her face. And we have now household photos on Monday. Oy.
In the event you don’t snort you cry. Tonight, I could sip some wine and do the latter.
I don’t write all of this to complain. I write to get issues out of my head and to offer everybody who follows our story and prays for our household, a bit window into the lifetime of parenting youngsters who’re uncommon, who’ve particular wants and who battle life threatening situations.
Oh, by the way in which, earlier than I may even get this posted, she projectile vomited throughout herself, me, Minnie Mouse, the blankets and the sofa. That is mito.
With a glass half empty of wine (solely as a result of I already drank the opposite half), Lorelei’s mommy…